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Reynolds DP, Chalder T, Henderson C. The mediating role of psychological inflexibility on internalized stigma and patient outcomes in a sample of adults with inflammatory bowel disease. J Crohns Colitis 2025; 19:jjaf055. [PMID: 40168103 PMCID: PMC12060869 DOI: 10.1093/ecco-jcc/jjaf055] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/27/2024] [Indexed: 04/03/2025]
Abstract
BACKGROUND This study examined the relationship between psychological inflexibility, internalized stigma, and patient outcomes in adults with inflammatory bowel disease (IBD). It aimed to explore if psychological inflexibility mediated the relationship between internalized stigma and patient outcomes. METHODS Three hundred and eighty-two participants with IBD took part in a cross-sectional quantitative study conducted via an online survey from May to December 2020. Participants completed questionnaires that assessed psychological inflexibility, committed action, internalized stigma related to IBD, psychological distress, IBD self-efficacy, self-concealment, beliefs about emotions, and fatigue. Participants also completed a sociodemographic and clinical questionnaire in addition to a bespoke Covid-19 questionnaire. Pearson's correlations and exploratory simple mediation analyses were used to examine relationships between variables and the mediating effect of psychological inflexibility. RESULTS 40.5% of participants experienced internalized stigma. Higher psychological inflexibility was associated with higher internalized stigma, lower committed action, poorer health-related quality of life, lower IBD self-efficacy, higher self-concealment, higher fatigue, and more negative beliefs about emotions. Psychological inflexibility partially mediated the relationship between internalized stigma and several patient outcomes (psychological distress, IBD health-related quality of life, IBD self-efficacy, and self-concealment) and completely mediated the relationship between internalized stigma and fatigue. CONCLUSION Psychological inflexibility significantly impacts the quality of life in individuals with internalized stigma related to IBD and mediates the relationship between internalized stigma and patient outcomes. Increasing psychological flexibility in adults with IBD may reduce distress and enhance quality of life. Longitudinal studies and trials of psychological interventions targeting psychological flexibility warrant exploration.
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Affiliation(s)
- Darren P Reynolds
- King’s College London, Institute of Psychiatry Psychology & Neuroscience, Department of Psychology, London, United Kingdom
| | - Trudie Chalder
- King’s College London, School of Population Health and Environmental Sciences, London, United Kingdom
| | - Claire Henderson
- King’s College London, Department of Psychological Medicine, Department of Psychological Medicine, London, United Kingdom
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Chester MA, Keefer L. Beyond Depression and Anxiety in Inflammatory Bowel Diseases: Forging a Path Toward Emotional Healing. Am J Gastroenterol 2025; 120:999-1006. [PMID: 39382574 DOI: 10.14309/ajg.0000000000003125] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/14/2024] [Accepted: 10/03/2024] [Indexed: 10/10/2024]
Abstract
Inflammatory bowel diseases (IBDs) are chronic, often debilitating diseases characterized by inflammation of the digestive tract. IBDs affect up to 1% of the world's population and tend to be diagnosed in the second and third decades of life. In addition to physical burdens, IBDs have significant psychological manifestations stemming from bidirectional inflammatory and coping pathways and thus, are best understood from a biopsychosocial perspective. Though previous IBD literature has predominantly focused on traditional psychological comorbidities, such as anxiety and depression, recent studies have uncovered adjustment disorders, post-traumatic stress, and disordered eating as prevalent manifestations of the disease. This review will summarize the rates and postulated biopsychosocial mechanisms underlying these conditions to frame how cultivating resilience can protect against IBD symptoms and help forge a path toward emotional healing. We will also provide guidance to aid clinicians in screening for these conditions and creating a trauma-informed healthcare environment.
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Affiliation(s)
- Maia A Chester
- Icahn School of Medicine at Mount Sinai, Division of Gastroenterology, New York, New York, USA
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Zhao YE, He XF, Zhu XQ, Chen F, Guo QZ. Mediating effect of self-efficacy between family resilience and psychological resilience in inflammatory bowel disease patients. Shijie Huaren Xiaohua Zazhi 2025; 33:207-214. [DOI: 10.11569/wcjd.v33.i3.207] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/28/2024] [Revised: 01/18/2025] [Accepted: 03/16/2025] [Indexed: 03/28/2025] Open
Abstract
BACKGROUND Patients with inflammatory bowel disease (IBD) often experience various negative emotions. Psychological resilience, as an individual's ability to recover from adversity or successfully cope, can help him/her to fight against diseases. Under the hypothesis that multiple external factors can promote the growth of psychological resilience, this study used mediation analysis to explore the external factors that enhance psychological resilience in IBD patients.
AIM To explore the mediating effect of self-efficacy in patients with IBD on family resilience and psychological resilience.
METHODS One hundred and thirty IBD patients hospitalized in the Department of Gastroenterology, Tongji Hospital, Wuhan City from January 2021 to June 2021 were selected as questionnaire respondents by convenient sampling. The patients were investigated by using the family resilience index (FHI), the IBD self-efficacy scale (IBD-SES), and the Connor Davidson Resilience Scale (CD-RISC). The data were analyzed by correlation and regression analyses, and the mediating effect of self-efficacy was tested by the intermediary effect test program proposed by Wen Zhonglin, etc.
RESULTS The family resilience of IBD patients was positively correlated with self-efficacy (r = 0.176, P < 0.05) and psychological resilience (r = 0.359, P < 0.01). There was a positive correlation between self-efficacy and resilience (r = 0.693, P < 0.01). Self-efficacy has a certain mediating effect between family resilience and psychological resilience, and the contribution rate of this mediating effect is 42.32%.
CONCLUSION The resilience of IBD patients is at a low level. Self-efficacy plays an intermediary role between family resilience and psychological resilience. Nursing workers can improve patients' psychological resilience by improving their self-efficacy and family resilience.
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Affiliation(s)
- Yu-E Zhao
- Nursing Department of Tongji Hospital Affiliated to Tongji Medical College, Huazhong University of Science and Technology, Wuhan 430000, Hubei Province, China
| | - Xi-Fei He
- Nursing Department of Tongji Hospital Affiliated to Tongji Medical College, Huazhong University of Science and Technology, Wuhan 430000, Hubei Province, China
| | - Xiu-Qin Zhu
- Nursing Department of Tongji Hospital Affiliated to Tongji Medical College, Huazhong University of Science and Technology, Wuhan 430000, Hubei Province, China
| | - Fan Chen
- Nursing Department of Tongji Hospital Affiliated to Tongji Medical College, Huazhong University of Science and Technology, Wuhan 430000, Hubei Province, China
| | - Qiao-Zhen Guo
- Nursing Department of Tongji Hospital Affiliated to Tongji Medical College, Huazhong University of Science and Technology, Wuhan 430000, Hubei Province, China
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Zhu Y, Liu K, Jiang J, Cheng X, Wang H, Long F, Li K, Mu C, Cui L. Structural equation modeling of the impact of disease activity on inflammatory bowel disease control: the mediating roles of self-efficacy and self-management behaviors. BMC Gastroenterol 2025; 25:30. [PMID: 39844024 PMCID: PMC11752657 DOI: 10.1186/s12876-025-03623-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/20/2024] [Accepted: 01/16/2025] [Indexed: 01/24/2025] Open
Abstract
BACKGROUND Maintaining effective disease control in patients with inflammatory bowel disease (IBD) is both a significant goal and challenge. Drawing on the Common-Sense Model of Self-Regulation (CSM) and related research, this study investigates how IBD activity status influences disease control through both direct and indirect pathways. METHODS A cross-sectional survey was conducted among 310 IBD patients who attended a tertiary general hospital, the leader of the IBD Alliance Group in Chongqing City, between March and August 2024. Structural equation modeling (SEM) was utilized to assess the role and magnitude of various influencing factor pathways. Relying on AMOS26 software, the path effects and magnitude of various factors in the disease control process were analyzed using structural equation modeling (SEM) to test hypothetical models. RESULTS A total of 306 valid questionnaires were collected, with a mean IBD-control score of 12.14 ± 3.665. There was a negative link between disease activity and IBD-control (P < 0.01) and a positive correlation between chronic illness management self-efficacy, IBD self-management behavior, and IBD-control (P < 0.01). Path analysis showed that IBD activity negatively predicted IBD control (β = -0.715, P = 0.01). Chronic disease management self-efficacy partially mediated this relationship (β = -0.071, P = 0.012). A significant chain-mediated pathway was identified, where IBD activity affected IBD control via self-efficacy guided by self-management behavior (β = -0.025, P = 0.007). However, the pathway where IBD activity influenced control through self-efficacy and subsequently self-management behavior showed only marginal significance (P = 0.074). CONCLUSION Effective self-management behaviors improve IBD control. High disease activity may reduce chronic disease management self-efficacy, impairing IBD control. Positive feedback loops involving self-management behaviors and enhanced self-efficacy are crucial for better disease control, as patients who perceive positive outcomes are more motivated to maintain these behaviors.
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Affiliation(s)
- Yongli Zhu
- Department of Nursing, Affiliated Hospital of North Sichuan Medical College, Nanchong, China
- North Sichuan Medical College, Nanchong, Nanchong, China
- Chongqing General Hospital, Chongqing University, Chongqing, China
| | - Ke Liu
- North Sichuan Medical College, Nanchong, Nanchong, China
| | - Jinfeng Jiang
- Department of Nursing, Affiliated Hospital of North Sichuan Medical College, Nanchong, China
- North Sichuan Medical College, Nanchong, Nanchong, China
| | - Xin Cheng
- North Sichuan Medical College, Nanchong, Nanchong, China
| | - Hao Wang
- Chongqing General Hospital, Chongqing University, Chongqing, China
| | - Feiyang Long
- Chongqing General Hospital, Chongqing University, Chongqing, China
| | - Kang Li
- Chongqing General Hospital, Chongqing University, Chongqing, China
| | - Changping Mu
- Chongqing General Hospital, Chongqing University, Chongqing, China.
| | - Lijun Cui
- Department of Nursing, Affiliated Hospital of North Sichuan Medical College, Nanchong, China
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Manzari ZS, Vossoughinia H, Nedaei B, Rafiei H, Mafi MH. Self-efficacy in patients with inflammatory bowel disease: the effect of self-care education by two randomized methods-teach-back and a smartphone application. HEALTH EDUCATION RESEARCH 2024; 39:535-543. [PMID: 39431751 DOI: 10.1093/her/cyae033] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/08/2023] [Revised: 07/19/2024] [Accepted: 10/03/2024] [Indexed: 10/22/2024]
Abstract
The use of the best teaching method to promote self-care in patients with inflammatory bowel disease (IBD) has not been well defined. Therefore, the current study was conducted to compare the effect of self-care education by two methods of teach-back and a smartphone application. The current clinical trial with a pre- and post-test design was conducted among 78 patients with IBD. Patients were allocated to three groups of application, teach-back and control using a simple blocked randomization. Data were collected using a checklist for demographic information and Inflammatory Bowel Disease Self-efficacy Scale. Collected data were analyzed using SPSS. Participants in all three groups were homogeneous in terms of demographic variables. The mean pretest scores of self-efficacy (SE) in the application, teach-back and control groups were 191.37 ± 49.15, 193.92 ± 45.54 and 192.76 ± 43.12, respectively. The mean post-test scores of SE in the application, teach-back and control groups were 224.51 ± 49.89, 207.48 ± 48.109 and 189.92 ± 40.28, respectively (P = 0.033). The results of the current study showed that self-care education by the application can better improve the mean scores of SE and its four dimensions of managing stress and emotions, managing symptoms and disease, managing medical care and maintaining remission, compared to other methods. It seems that the use of the application as a continuous and cost-effective educational strategy will become widespread in the future for patient education among most healthcare and treatment systems.
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Affiliation(s)
- Zahra Sadat Manzari
- Nursing and Midwifery Care Research Center, Mashhad University of Medical Sciences, Nursing and Midwifery School , Martyr Dr. Kharazmi Educational Building, University Campus, East Gate of Ferdowsi University of Mashhad, Azadi Square, Mashhad, Razavi Khorasan 9177949025, Iran
| | - Hassan Vossoughinia
- Department of Gastroenterology and Hepatology, Faculty of Medicine, Mashhad University of Medical Sciences, Azadi Square, Mashhad, Razavi Khorasan 9177948564, Iran
| | - Behzad Nedaei
- Department of Infectious Diseases, Tehran University of Medical Sciences, Imam Khomeini Hospital Complex, End of Keshavarz Blvd., Tehran 1419733141, Iran
| | - Hossein Rafiei
- Social Determinants of Health Research Center, Research Institute for Prevention of Non-Communicable Diseases, Qazvin University of Medical Sciences, Shahid Bahonar Boulevard, Qazvin 34197-59811, Iran
| | - Mohamad Hossein Mafi
- Social Determinants of Health Research Center, Research Institute for Prevention of Non-Communicable Diseases, Qazvin University of Medical Sciences, Shahid Bahonar Boulevard, Qazvin 34197-59811, Iran
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Sheehan JL, Greene-Higgs L, Resnicow K, Patel MR, Barnes EL, Waljee AK, Higgins PDR, Cohen-Mekelburg S. Self-Efficacy, Patient Activation, and the Burden of Inflammatory Bowel Disease on Patients' Daily Lives. Dig Dis Sci 2024; 69:4089-4097. [PMID: 39460883 PMCID: PMC11744776 DOI: 10.1007/s10620-024-08712-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/25/2024] [Accepted: 10/22/2024] [Indexed: 10/28/2024]
Abstract
BACKGROUND The effective management of inflammatory bowel disease (IBD) requires complex self-management behaviors. Both patient activation (the degree to which patients are willing and able to engage in care) and self-efficacy (one's confidence in performing certain behaviors) are thought to play an important role in chronic disease self-management, but patient activation is a broad concept that can be more difficult to precisely target than self-efficacy. We aimed to describe the relationship between patient activation, self-efficacy, and the burden of IBD on patients' daily lives. METHODS Patients with IBD were recruited from a single center to complete a survey including the Patient Activation Measure (PAM-13®), the IBD Self-Efficacy Scale (IBD-SES), and an IBD-specific patient-reported outcome measure. Using multivariable linear regression, we examined the relationship between IBD burden, self-efficacy, and patient activation, adjusting a priori for age, gender, IBD type, IBD medications, active corticosteroid use, anxiety, and depression. We performed a post-hoc mediation analysis to examine self-efficacy as a potential mediator in the relationship between patient activation and the burden of IBD on patient's daily lives. RESULTS A total of 132 patients with IBD completed the survey (59% Crohn's disease, 41% ulcerative colitis, 52% female). Higher levels of patient activation and higher levels of self-efficacy were each associated with lower IBD burden (patient activation: ß = - 1.9, p < 0.001, self-efficacy: ß = - 2.6, p < 0.001). Post hoc mediation analysis confirmed that the relationship between patient activation and daily IBD burden was mediated by self-efficacy (Average Causal Mediation Effect = - 1.00, p < 0.001, proportion mediated = 0.62, p < 0.001). DISCUSSION The relationship between patient activation and IBD burden is highly mediated by self-efficacy, suggesting that self-efficacy could be a more precise target for intervention. Future studies could focus on targeting self-efficacy to build individuals' confidence in IBD self-management and testing of IBD-tailored self-management programs to ultimately improve disease outcomes.
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Affiliation(s)
- Jessica L Sheehan
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, MI, USA.
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI, USA.
| | - LaVana Greene-Higgs
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, MI, USA
| | - Kenneth Resnicow
- Department of Health Behavior & Health Education, School of Public Health, University of Michigan, Ann Arbor, MI, USA
| | - Minal R Patel
- Department of Health Behavior & Health Education, School of Public Health, University of Michigan, Ann Arbor, MI, USA
| | - Edward L Barnes
- Division of Gastroenterology and Hepatology, Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
| | - Akbar K Waljee
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, MI, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI, USA
- Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, MI, USA
| | - Peter D R Higgins
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, MI, USA
| | - Shirley Cohen-Mekelburg
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, MI, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, MI, USA
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Bacsur P, Resál T, Sarlós P, Iliás Á, Dalma Sümegi L, Kata D, Dávid A, Farkas B, Ivány E, Bálint A, Bősze Z, Fábián A, Bor R, Szepes Z, Afif W, Bessissow T, Farkas K, Lakatos PL, Molnár T. Outcomes of treatment cessation after switching to subcutaneous vedolizumab treatment in inflammatory bowel diseases. Therap Adv Gastroenterol 2024; 17:17562848241290636. [PMID: 39464507 PMCID: PMC11503703 DOI: 10.1177/17562848241290636] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/26/2024] [Accepted: 09/13/2024] [Indexed: 10/29/2024] Open
Abstract
BACKGROUND The usability of subcutaneous vedolizumab (s.c. VDZ) treatment in inflammatory bowel diseases (IBD; ulcerative colitis (UC), Crohn's disease (CD)) has been proven via clinical trials while real-world data collection is ongoing. OBJECTIVES Our study evaluates the effectiveness, safety, patients' preferences, and psychological factors associated with s.c. VDZ treatment, after switching from intravenous (i.v.) formulation. DESIGN Prospective, multicenter cohort study including IBD patients switching from i.v. VDZ to s.c. treatment and were evaluated over 52 weeks. METHODS Serum VDZ levels and C-reactive protein (CRP) were measured at the baseline and w52. At w12, a questionnaire on the patient's satisfaction and psychological characteristics was administered. The primary outcome was the drug persistence rate (cessation was due to loss of response (LOR), adverse events, patient request, and other causes) at w52, while the secondary outcomes were the changes in the clinical corticosteroid-free remission (CSFR) and biochemical remission (BR; CRP ⩽ 5 mg/L) rates, safety issues, serum drug levels, patients' preferences, and psychological features. RESULTS In total, 70 IBD patients were evaluated (32 CD patients, 38 UC patients; male/female ratio: 41.4%; median age: 43.2 years). In the CD group, 81.3% were in CSFR and 65.6% were in BR, while in the UC group, 71.7% were in CSFR and 69.4% were in BR. Overall, 17.1% of the patients ceased s.c. VDZ treatment after a median of 26.2 (interquartile range 20-47) weeks. LOR was registered in 3/12 ceased patients. In addition, CSFR and BR rates were stable, while serum VDZ levels increased by w52 (p < 0.001). CONCLUSION The transition from i.v. to s.c. VDZ treatment was effective, the overall persistence rate was associated with high serum drug levels, and no novel safety issues were reported. Although s.c. administration after induction can save resources, some patients still insisted on i.v. VDZ treatment, due to its proven formulation.
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Affiliation(s)
- Péter Bacsur
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
- HCEMM-USZ Translational Colorectal Research Group, Szeged, Hungary
| | - Tamás Resál
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Patrícia Sarlós
- Division of Gastroenterology, First Department of Medicine, Medical School, University of Pécs, Pécs, Hungary
| | - Ákos Iliás
- Department of Internal Medicine and Oncology, Semmelweis University, Budapest, Hungary
| | - Liza Dalma Sümegi
- Department of Internal Medicine and Oncology, Semmelweis University, Budapest, Hungary
| | - Diána Kata
- Institute of Laboratory Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Anett Dávid
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Bernadett Farkas
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Emese Ivány
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Anita Bálint
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Zsófia Bősze
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Anna Fábián
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Renáta Bor
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Zoltán Szepes
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary
| | - Waqqas Afif
- Division of Gastroenterology, McGill University Health Center, Montreal, QC, Canada
| | - Talat Bessissow
- Division of Gastroenterology, McGill University Health Center, Montreal, QC, Canada
| | - Klaudia Farkas
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Kálvária Avenue 57, Szeged H-6725, Hungary
- HCEMM-USZ Translational Colorectal Research Group, Szeged, H-6728, Hungary
| | - Péter L. Lakatos
- Division of Gastroenterology, McGill University Health Centre, Montreal General Hospital, 1650 Avenue Cedar, D7-201, Montreal, QC H3G 1A4, Canada
- Department of Internal Medicine and Oncology, Semmelweis University, Koranyi S 2A, Budapest H-1083, Hungary
| | - Tamás Molnár
- Department of Medicine, Albert Szent-Györgyi Medical School, University of Szeged, Kálvária Avenue 57, Szeged H-6725, Hungary
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Lee YJ, Kim HW, Kim YH, Yang SK, Kim JY. Effects of a Pre-Conception Care Program in Women with Inflammatory Bowel Disease: A Mixed-Methods Study Including a Randomized Controlled Trial. J Korean Acad Nurs 2024; 54:386-402. [PMID: 39248424 DOI: 10.4040/jkan.24010] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/25/2024] [Revised: 05/21/2024] [Accepted: 06/25/2024] [Indexed: 09/10/2024]
Abstract
PURPOSE The purpose of this study was to conduct a pre-conception care program for women of childbearing age with inflammatory bowel disease (IBD) in Korea and verify its effects on self-efficacy for IBD management, IBD-related pregnancy knowledge, and IBD-related pregnancy anxiety. It also aimed to explore the changes in participants through the program. METHODS A convergent mixed-methods study design was adopted. In the quantitative phase, 35 women (17 and 18 in the intervention and control group, respectively) participated. The intervention group attended a program that included small-group sessions and individual tele-coaching. To confirm the effects, data were collected before and one and four weeks after the intervention. In the qualitative stage, focus group interviews and tele-coaching were conducted with the intervention group. RESULTS After the program ended, significant differences were observed over time between the intervention and control groups for self-efficacy for IBD management (Wald χ² = 4.41, p = .036), IBD-related pregnancy knowledge (Wald χ² = 13.80, p < .001) and IBD-related pregnancy anxiety (Wald χ² = 8.61, p = .003). Qualitative data analysis revealed the following themes: (1) improving confidence in IBD management and awareness for planned pregnancy; (2) improving IBD awareness related to pregnancy and childbirth; and (3) relieving anxiety about and actively facing pregnancy. CONCLUSION This study is meaningful in that, to the best of our knowledge, it is the first to develop a pre-conception care program for women diagnosed with IBD and confirm its effectiveness. Furthermore, this program is expected to be suitable for patient counseling and education in clinical practice.
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Affiliation(s)
- Young Jin Lee
- College of Nursing, Eulji University, Uijeongbu, Korea.
| | - Hae Won Kim
- College of Nursing, Seoul National University, Seoul, Korea
- Center for World-leading Human-care Nurse Leaders for the Future by Brain Korea 21 (BK 21) Four Project, College of Nursing, Seoul National University, Seoul, Korea
- The Research Institute of Nursing Science, College of Nursing, Seoul National University, Seoul, Korea.
| | - Yeon Hee Kim
- Department of Clinical Nursing, University of Ulsan, Seoul, Korea
| | - Suk-Kyun Yang
- Department of Gastroenterology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea
| | - Ji-Yeon Kim
- College of Nursing, Eulji University, Uijeongbu, Korea
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Tanaka M, Kawakami A, Sakagami K, Terai T, Ito H. Influence of multidisciplinary team care with abundant nurse staffing on patient-reported outcomes among patients with inflammatory bowel disease in clinical remission. Health Qual Life Outcomes 2024; 22:44. [PMID: 38835030 DOI: 10.1186/s12955-024-02247-w] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/26/2023] [Accepted: 03/25/2024] [Indexed: 06/06/2024] Open
Abstract
BACKGROUND Patients with inflammatory bowel disease (IBD) experience difficulties in daily life and demanding self-care needs. The goal of our support for patients is to ease their difficulties and improve their belief in their capacity to self-manage their disease (self-efficacy), by increasing their ability for self-care. The nurse's contribution is vital in empowering patients and supporting them to better manage their disease. There is evidence that higher nurse staffing levels are associated with better patient outcomes in acute care settings, but little is known about the outpatient setting. The objective of this study was to explore the impact of multidisciplinary team care with abundant nurse staffing levels on patient-reported outcome measures (PROMs) among patients with IBD, encompassing Crohn's disease (CD) and ulcerative colitis (UC), in clinical remission. METHODS Patients with IBD in clinical remission were included because disease activity influences the patient's subjective evaluation. A total of 499 valid responses from two different sources were analyzed: 318 from a specialized IBD clinic with abundant nurse staffing and a multidisciplinary care team (UC: 83, CD: 235) and 181 from an online survey panel (UC: 109, CD: 72). The IBD Self-Efficacy Scale (IBD-SES) and the difficulty of life scale (DLS) were used as disease-specific PROMs. RESULTS In two multiple regression models adjusted by background characteristics (age, sex, diagnosis [UC/CD], employment status, use of biologics, and disease duration) using the IBD-SES or DLS as a dependent variable, the responses from clinic patients showed a more favorable score (higher self-efficacy or lower difficulty) than the online responses. CONCLUSIONS Multidisciplinary team care with abundant nurse staffing may improve self-efficacy and ease difficulties of life among patients with IBD in clinical remission. These results could help bring attention to nurse staffing in an outpatient setting, which has previously been overlooked, and be the first to provide evidence of its importance in encouraging enhanced staffing levels.
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Affiliation(s)
- Makoto Tanaka
- Department of Adult Health Nursing, Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), 1-5-45 Yushima, Bunkyo-ku, 113-8510, Tokyo, Japan.
| | - Aki Kawakami
- Department of Adult Health Nursing, Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), 1-5-45 Yushima, Bunkyo-ku, 113-8510, Tokyo, Japan
| | - Kayoko Sakagami
- Kinshukai Infusion Clinic, Grand Front Osaka Tower B 9F, 3-1 Ofuka-cho, Kita-ku, 530-0011, Osaka, Japan
| | - Tomoko Terai
- Takeda Pharmaceutical Company Limited, Japan Medical Office, 1-1 Nihonbashi-Honcho 2-Chome, Chuo- ku, 103-8338, Tokyo, Japan
| | - Hiroaki Ito
- Kinshukai Infusion Clinic, Grand Front Osaka Tower B 9F, 3-1 Ofuka-cho, Kita-ku, 530-0011, Osaka, Japan.
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Tanaka M, Kawakami A, Sakagami K, Terai T, Fernandez J, Keefer L, Ito H. Development and validation of a 13-item short version of the inflammatory bowel disease self-efficacy scale. BMC Gastroenterol 2024; 24:190. [PMID: 38822266 PMCID: PMC11141053 DOI: 10.1186/s12876-024-03206-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/13/2023] [Accepted: 03/15/2024] [Indexed: 06/02/2024] Open
Abstract
BACKGROUND The inflammatory bowel disease self-efficacy scale (IBD-SES) is an instrument used across many countries to measure important health outcomes of patients with inflammatory bowel disease (IBD). We aimed to develop and validate a substantially shorter version of this scale to reduce patients' response burden. METHODS A total of 919 patients with IBD, 482 recruited from an IBD clinic and 437 recruited online, completed the Japanese version of the original, 29-item IBD-SES. These data were then used to develop a shorter version of the scale. The original 29 items of the IBD-SES were reduced with three analytic steps: assessing ceiling and floor effect, testing correlation between items, and assessing test-retest reliability. The resulting 13-item IBD-SES was evaluated for construct validity by confirmatory factor analysis, criterion validity by Pearson correlation coefficients with original version, and internal consistency by item-total correlations and the Cronbach's α coefficient. RESULTS The short version consisted of the same four subscales "managing stress and emotions," "managing medical care," "managing symptoms and disease," and "maintaining remission" as the original scale. The fit indices of the final model were as follows: normed chi-square, 7.18 (p < 0.001); comparative fit index, 0.94; goodness-of-fit index, 0.93; adjusted goodness-of-fit index, 0.89; parsimony goodness-of-fit index, 0.60; and root mean square error of approximation, 0.084. Correlation of each subscale with the original scale was high (0.97-0.98). Cronbach's α for each subscale ranged from 0.68 to 0.86. CONCLUSIONS A short version of the IBD-SES was developed. The results confirmed the improved validity, reliability, and psychometric properties of the IBD-SES. TRIAL REGISTRATION Not applicable.
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Affiliation(s)
- Makoto Tanaka
- Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan.
| | - Aki Kawakami
- Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
| | | | - Tomoko Terai
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
| | - Jovelle Fernandez
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
- L.L.C., Middletown, DE, USA
| | - Laurie Keefer
- Icahn School of Medicine at Mount Sinai, New York City, NY, USA
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11
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Norouzkhani N, Faramarzi M, Bahari A, Shokri Shirvani J, Shirvani YE, Eslami S, Tabesh H. Effect of a gamified mobile-based self-management application on disease activity index, quality of life, and mental health in adults with inflammatory bowel disease: A protocol of a randomized controlled trial study. Health Sci Rep 2024; 7:e2109. [PMID: 38779219 PMCID: PMC11109478 DOI: 10.1002/hsr2.2109] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/19/2023] [Revised: 03/26/2024] [Accepted: 04/22/2024] [Indexed: 05/25/2024] Open
Abstract
Background and Aims Inflammatory bowel disease (IBD) is a chronic inflammatory gastrointestinal tract disease subdivided into Crohn's disease (CD) and ulcerative colitis (UC). There is currently no cure for IBD, and individuals with IBD frequently experience a lower health-related quality of life (HRQOL) than the general population. Gamification has become an increasingly popular topic in recent years. Adapting game design concepts to nongaming contexts represents a novel and potential approach to changing user engagement. This study will be conducted with the aim of evaluating the effect of a gamified mobile-based self-management application on disease activity index, quality of life, and mental health in adults with IBD. Methods A multicenter, parallel, two-arm, exploratory randomized controlled trial with a 6-month follow-up per patient will be designed to compare the impact of the gamified mobile-based tele-management system on primary and secondary health outcomes and outpatient visits in 210 patients with all types of IBD which are divided equally into a control group with standard care and an intervention group which will use the developed mobile application named MY IBD BUDDY. All patients will attend study visits at baseline, 12 and 24 weeks, and routine IBD clinic visits or telephone consultations based on randomization group assignment. Disease activity or disease activity index, mental health (anxiety and depression) symptoms, quality of life, self-efficacy, and IBD-specific knowledge will be measured at baseline with two follow-ups at 12 and 24 weeks. Conclusions In sum, the outcomes of our trial will demonstrate the impact of the gamified mobile-based self-management system on disease activity, quality of life, and anxiety and depression by means of interactive care and patient empowerment. Trial Registration IRCT: IRCT20200613047757N1. Registered November 16, 2021. Prospectively registered and visible at OSF (https://doi.org/10.17605/OSF.IO/AWFY9).
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Affiliation(s)
- Narges Norouzkhani
- Department of Medical Informatics, Faculty of MedicineMashhad University of Medical SciencesMashhadIran
| | - Mahbobeh Faramarzi
- Population, Family and Spiritual Health Research Center, Health Research InstituteBabol University of Medical SciencesBabolIran
| | - Ali Bahari
- Department of Internal Medicine, Faculty of MedicineMashhad University of Medical SciencesMashhadIran
| | | | | | - Saeid Eslami
- Department of Medical Informatics, Faculty of MedicineMashhad University of Medical SciencesMashhadIran
- Pharmaceutical Research CenterMashhad University of Medical SciencesMashhadIran
| | - Hamed Tabesh
- Department of Medical Informatics, Faculty of MedicineMashhad University of Medical SciencesMashhadIran
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12
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Rohde JA, Saffer AJ, Zhao X. Health discussion network characteristics among a sample of people with inflammatory bowel disease. Chronic Illn 2024; 20:105-116. [PMID: 36949555 DOI: 10.1177/17423953231164794] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 03/24/2023]
Abstract
OBJECTIVES This study examined the health discussion networks (HDNs) of people with inflammatory bowel disease (IBD). We sought to test if HDN characteristics were associated with IBD management self-efficacy outcomes. METHODS We recruited a sample of adults with IBD (N = 112) in December 2020 to take an online survey. Participants listed up to five people (alters) who they discussed their health with, and we used those data to construct individual HDNs. Participants provided demographic information about alters, and characterized alter by relationship, closeness, and support provided. We used multivariable regression to examine associations of HDN characteristics with IBD symptoms, remission, and emotions management self-efficacy outcomes. RESULTS Participants reported data for 412 alters (mean HDN size: 3.68). Alters were mostly friends (40%) or family members (36%); few were healthcare workers (6%). In multivariable analyses, HDN size was associated with remission and emotions management self-efficacy (ps < .05), and the amount of support offered by alters was associated with emotions management self-efficacy (p < .05). DISCUSSION HDN size and alter support variables were associated with some IBD management self-efficacy outcomes among our study sample. These findings provide empirical evidence about HDNs among people with IBD and support the notion that disease management is a collective effort.
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Affiliation(s)
- Jacob A Rohde
- Cancer Prevention Fellowship Program, Division of Cancer Prevention, National Cancer Institute, Bethesda, MD, USA
| | - Adam J Saffer
- Hubbard School of Journalism and Mass Communication, University of Minnesota Twin Cities, Minneapolis, MN, USA
| | - Xinyan Zhao
- Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
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13
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Kuriakose Kuzhiyanjal AJ, Nigam GB, Antoniou GA, Farraye FA, Cross RK, Limdi JK. Management of Inflammatory Bowel Disease Using E-health Technologies: A Systematic Review and Meta-Analysis. J Crohns Colitis 2023; 17:1596-1613. [PMID: 37099723 PMCID: PMC10637047 DOI: 10.1093/ecco-jcc/jjad075] [Citation(s) in RCA: 15] [Impact Index Per Article: 7.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/15/2022] [Indexed: 04/28/2023]
Abstract
BACKGROUND AND AIMS Technological advances have provided innovative, adaptive, and responsive models of care for inflammatory bowel diseases [IBD]. We conducted a systematic review to compare e-health interventions with standard care in management of IBD. METHODS We searched electronic databases for randomised, controlled trials [RCT] comparing e-health interventions with standard care for patients with IBD. Effect measures were standardised mean difference [SMD], odds ratio [OR], or rate ratio [RR], calculated using the inverse variance or Mantel-Haenszel statistical method and random-effects models. Version 2 of the Cochrane tool was used to assess the risk of bias. The certainty of evidence was appraised with the GRADE framework. RESULTS Fourteen RCTs [n = 3111; 1754 e-health and 1357 controls] were identified. The difference in disease activity scores (SMD 0.09, 95% confidence interval [CI]: -0.09-0.28) and clinical remission (odds ratio [OR] 1.12, 95% CI: 0.78-1.61) between e-health interventions and standard care were not statistically significant. Higher quality of life [QoL] [SMD 0.20, 95% CI: 0.05-0.35) and IBD knowledge [SMD 0.23, 95% CI: 0.10-0.36] scores were noted in the e-health group, and self-efficacy levels [SMD -0.09, 95% CI: -0.22-0.05] were comparable. E-health patients had fewer office [RR 0.85, 95% CI: 0.78-0.93] and emergency [RR 0.70, 95% CI: 0.51- 0.95] visits, with no statistically significant difference in endoscopic procedures, total health care encounters, corticosteroid use, and IBD related hospitalisation or surgery. The trials were judged to be at high risk of bias or to have some concerns for disease remission. The certainty of evidence was moderate or low. CONCLUSION E-health technologies may have a role in value-based care in IBD.
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Affiliation(s)
- Anish J Kuriakose Kuzhiyanjal
- Northern Care Alliance NHS Foundation Trust, Division of Gastroenterology-Section of IBD, Manchester, UK; and. Edgehill University, Ormskirk, UK
| | - Gaurav B Nigam
- Translational Gastroenterology Unit, Oxford University Hospitals NHS Foundation Trust, Oxford, UK; and Oxford University Clinical Academic Graduate School, University of Oxford, Oxford, UK
| | - George A Antoniou
- Department of Vascular and Endovascular Surgery, Manchester University NHS Foundation Trust, Manchester, UK; and Division of Cardiovascular Sciences, School of Medical Sciences, Manchester Academic Health Science Centre, University of Manchester, Manchester, UK
| | - Francis A Farraye
- Mayo Clinic, Division of Gastroenterology and Hepatology, Jacksonville, FL, USA
| | - Raymond K Cross
- University of Maryland School of Medicine, Division of Gastroenterology & Hepatology, Baltimore, MD, USA
| | - Jimmy K Limdi
- Northern Care Alliance NHS Foundation Trust, Division of Gastroenterology-Section of IBD, Manchester, UK; and Manchester Academic Health Sciences, University of Manchester, Manchester, UK
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14
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Kamp KJ, Hawes SE, Tse CS, Singh S, Dang N, Oberai R, Weaver SA, Melmed GY, Siegel CA, van Deen WK. Concordance and Discordance Between Patient-reported Remission, Patient-reported Outcomes, and Physician Global Assessment. Inflamm Bowel Dis 2023; 29:1255-1262. [PMID: 36179129 PMCID: PMC10393067 DOI: 10.1093/ibd/izac206] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/21/2022] [Indexed: 12/09/2022]
Abstract
BACKGROUND Although validated patient-reported outcome (PRO) measurements can categorize patients with inflammatory bowel disease (IBD) into clinical remission or active disease, patients may have different definitions of remission. The purpose of this study was to compare patient-defined remission to remission based on PRO measures and physician global assessment (PGA) and to understand the clinical and demographic factors associated with disagreements. METHODS We retrospectively analyzed 3257 de-identified surveys from 2004 IBD patients who consented to participate in the Crohn's and Colitis Foundation's IBD Qorus Learning Health System between September 2019 and February 2021. We used logistic regression models with generalized estimating equations to analyze the clinical and demographic factors (eg, age, disease duration, health confidence) associated with discordance between patient-defined remission (yes/no) and PRO-defined remission for ulcerative colitis (UC; PRO2: stool frequency, rectal bleeding) and Crohn's disease (CD; PRO-3: average number of liquid stools, abdominal pain, well-being). RESULTS Among patients with UC, overall concordance was 79% between patient self-report and PRO2-defined remission and 49% between patient self-report and PGA-defined remission. Among patients with CD, overall concordance was 69% between patient self-report and PRO3-defined remission and 54% between patient self-report and PGA-defined remission. Patients in PRO-defined remission were more likely to report active disease if they had IBD <5 years and low health confidence. Patients with PRO-defined active disease were more likely to report remission if they were not using prednisone and had high health confidence. CONCLUSION Discordance exists between how remission is defined by patients, PRO measures, and PGA.
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Affiliation(s)
- Kendra J Kamp
- University of Washington, Seattle, WA, United States
| | | | - Chung Sang Tse
- University of California - San Diego, San Diego, CA, United States
| | - Siddharth Singh
- University of California - San Diego, San Diego, CA, United States
| | - Nhu Dang
- Brown University, Providence, RI, United States
| | - Ridhima Oberai
- Crohn’s and Colitis Foundation, New York, NY, United States
| | | | - Gil Y Melmed
- Cedars-Sinai Medical Center, Los Angeles, CA, United States
| | - Corey A Siegel
- Dartmouth-Hitchcock Medical Center, Hanover, NH, United States
| | - Welmoed K van Deen
- Erasmus School of Health Policy and Management, Rotterdam, the Netherlands
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15
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Horvát B, Dávid A, Sallay V, Rafael B, Njers S, Orbán K, Molnár T, Csabai M, Martos T. Improving disease management of patients with inflammatory bowel disease: the potential role of self-concordant health goals. Front Psychol 2023; 14:1115160. [PMID: 37484082 PMCID: PMC10359902 DOI: 10.3389/fpsyg.2023.1115160] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/03/2022] [Accepted: 06/13/2023] [Indexed: 07/25/2023] Open
Abstract
Inflammatory bowel diseases (IBD) are chronic gastrointestinal conditions that significantly impact patients' quality of life. Previous research indicates that patients with IBD have a higher prevalence of anxiety compared to the general population and other chronic diseases. This pilot study aimed to investigate the relationships between goal integration, positive and negative emotions, goal self-efficacy, and trait anxiety as the outcome variable, focusing on patients' self-management strategies. Drawing from the Self-Concordance Model (SCM) of Self-Determination Theory (SDT), the study explored how goal integration is associated with more fulfilling and enjoyable experiences and fewer negative emotions, ultimately improving psychological well-being. Health-related goals were evaluated using the Personal Project Analysis technique, while the State-Trait Anxiety Inventory was utilized to measure general anxiety levels. Among the 141 participants with inflammatory bowel disease, 96 reported having health-related goals. Of these, 66 were female (68.75%), and 30 were male participants (31.25%). Path analysis revealed a moderate negative association between self-concordance (SC) and negative emotions, which, in turn, predicted higher levels of trait anxiety. Furthermore, the alternative model tested indicated that trait anxiety predicted a lower level of self-concordance. Setting well-integrated health goals involves an internal capacity, enabling patients to experience less negative emotions during self-management activities. Anxiety can hinder individuals from accessing their inner needs, resulting in less self-concordant aspirations and more negative emotions. These findings may contribute to developing prevention and intervention programs to enhance IBD patients' adherence to lifestyle changes, ultimately improving their overall well-being.
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Affiliation(s)
- Barbara Horvát
- Doctoral School of Clinical Medicine, University of Szeged, Szeged, Hungary
| | - Anett Dávid
- Department of Medicine, University of Szeged, Szeged, Hungary
| | - Viola Sallay
- Institute of Psychology, University of Szeged, Szeged, Hungary
| | - Beatrix Rafael
- Department of Preventive Medicine, University of Szeged, Szeged, Hungary
| | - Sanela Njers
- Department of Cognitive and Neuropsychology, University of Szeged, Szeged, Hungary
| | - Kata Orbán
- Doctoral School of Clinical Medicine, University of Szeged, Szeged, Hungary
| | - Tamás Molnár
- Department of Medicine, University of Szeged, Szeged, Hungary
| | - Márta Csabai
- Department of Clinical Psychology, Károli Gáspár University of the Reformed Church, Budapest, Hungary
| | - Tamás Martos
- Institute of Psychology, University of Szeged, Szeged, Hungary
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16
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He D, He L, Yuan Y, Huang L, Xiao Q, Ye X, Zhang JE. Stigma and its correlates among patients with Crohn's disease: A cross-sectional study in China. Int J Nurs Sci 2023; 10:318-324. [PMID: 37545781 PMCID: PMC10401350 DOI: 10.1016/j.ijnss.2023.06.012] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/25/2023] [Revised: 06/19/2023] [Accepted: 06/20/2023] [Indexed: 08/08/2023] Open
Abstract
Objectives Crohn's disease is an incurable disease characterized by unpredictable intestinal symptoms, which unavoidably affect patients' lives and contribute to feelings of stigma. This study aimed to explore the status and its correlates of stigma among patients with Crohn's disease. Methods Using a convenience sampling, 146 hospitalized patients with Crohn's disease were recruited in a tertiary hospital in Southern China from October 2020 to March 2021. The participants were assessed by demographic and disease-related questionnaires, the Social Impact Scale (SIS), Inflammatory Bowel Disease-Self-Efficacy Scale (IBD-SES), and Social Support Rating Scale (SSRS). Multivariate linear regression analysis was conducted to explore the influencing factors of stigma among patients with Crohn's disease. Results The mean SIS score was 58.14 ± 10.74, representing a moderate effect of stigma, and 85.6% (125/146) of the patients experienced moderate to high levels of stigma. The multiple linear regression analysis showed that perceived public awareness of the disease, family income, age, and self-efficacy were the main influencing factors of stigma, which could explain 52% of the total variation of stigma among patients with Crohn's disease. Conclusion Stigma among patients with Crohn's disease is influenced by perceived public awareness of the disease, family income, age, and self-efficacy. Interventions aimed at improving self-efficacy and public awareness should be considered to alleviate the level of stigma, especially for those aged 40 years or older or low-income patients.
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Affiliation(s)
- Dandan He
- Department of General Surgery (Colorectal Surgery), The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Guangdong Provincial Key Laboratory of Colorectal and Pelvic Floor Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Biomedical Innovation Center, National Key Clinical Discipline, Guangdong Provincial Clinical Research Center for Digestive Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
| | - Lanzhen He
- Department of General Surgery (Colorectal Surgery), The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Guangdong Provincial Key Laboratory of Colorectal and Pelvic Floor Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Biomedical Innovation Center, National Key Clinical Discipline, Guangdong Provincial Clinical Research Center for Digestive Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
| | - Yijuan Yuan
- Department of General Surgery (Colorectal Surgery), The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Guangdong Provincial Key Laboratory of Colorectal and Pelvic Floor Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Biomedical Innovation Center, National Key Clinical Discipline, Guangdong Provincial Clinical Research Center for Digestive Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
| | - Lingli Huang
- Department of General Surgery (Colorectal Surgery), The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Guangdong Provincial Key Laboratory of Colorectal and Pelvic Floor Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Biomedical Innovation Center, National Key Clinical Discipline, Guangdong Provincial Clinical Research Center for Digestive Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
| | - Qi Xiao
- Department of General Surgery (Colorectal Surgery), The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Guangdong Provincial Key Laboratory of Colorectal and Pelvic Floor Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Biomedical Innovation Center, National Key Clinical Discipline, Guangdong Provincial Clinical Research Center for Digestive Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
| | - Xinmei Ye
- Department of General Surgery (Colorectal Surgery), The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Guangdong Provincial Key Laboratory of Colorectal and Pelvic Floor Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
- Biomedical Innovation Center, National Key Clinical Discipline, Guangdong Provincial Clinical Research Center for Digestive Diseases, The Sixth Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong, China
| | - Jun-E Zhang
- School of Nursing, Sun Yat-Sen University, Guangzhou, Guangdong, China
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17
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Kamp K, Clark-Snustad K, Yoo L, Winders S, Cain K, Levy RL, Dey N, Lee S, Keefer L, Heitkemper M. A Comprehensive Self-Management Intervention for Inflammatory Bowel Disease (CSM-IBD): Protocol for a Pilot Randomized Controlled Trial. JMIR Res Protoc 2023; 12:e46307. [PMID: 37285195 DOI: 10.2196/46307] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/17/2023] [Revised: 04/27/2023] [Accepted: 04/30/2023] [Indexed: 06/08/2023] Open
Abstract
BACKGROUND Despite pharmacological treatment, individuals with inflammatory bowel disease (IBD) experience a variety of symptoms, including abdominal pain, fatigue, anxiety, and depression. Few nonmedical self-management interventions are available for people with IBD. A validated comprehensive self-management (CSM) intervention is effective for patients with irritable bowel syndrome who can have symptoms similar to those of individuals with IBD. We created a modified CSM intervention tailored to individuals with IBD (CSM-IBD). The CSM-IBD is an 8-session program delivered over 8-12 weeks with check-ins with a registered nurse. OBJECTIVE The primary objective of this pilot study is to determine the feasibility and acceptability of study procedures and the CSM-IBD intervention and to evaluate preliminary efficacy on quality of life and daily symptoms for a future randomized controlled trial. Additionally, we will examine the association of socioecological, clinical, and biological factors with symptoms at baseline and response to intervention. METHODS We are conducting a pilot randomized controlled trial of the CSM-IBD intervention. Participants aged 18-75 years who are experiencing at least 2 symptoms are eligible for inclusion. We plan to enroll 54 participants who will be randomized (2:1) into the CSM-IBD program or usual care. Patients in the CSM-IBD program will have 8 intervention sessions. Primary study outcomes include the feasibility of recruitment, randomization, and data or sample collection, as well as the acceptability of study procedures and interventions. Preliminary efficacy outcome variables include quality of life and symptoms. Outcomes data will be assessed at baseline, immediately post intervention, and 3 months post intervention. Participants in the usual care group will have access to the intervention after study participation. RESULTS This project is funded by the National Institutes of Nursing Research and reviewed by the University of Washington's institutional review board. Recruitment began in February 2023. As of April 2023, we have enrolled 4 participants. We expect the study to be completed by March 2025. CONCLUSIONS This pilot study will evaluate the feasibility and efficacy of a self-management intervention (a web-based program with weekly check-ins with a registered nurse) that aims to improve symptom management in individuals with IBD. In the long term, we aim to validate a self-management intervention to improve patient quality of life, reduce direct and indirect costs related to IBD, and be culturally appropriate and accessible, particularly in rural and underserved communities. TRIAL REGISTRATION ClinicalTrials.gov NCT05651542; https://clinicaltrials.gov/ct2/show/NCT05651542. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID) PRR1-10.2196/46307.
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Affiliation(s)
- Kendra Kamp
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
| | - Kindra Clark-Snustad
- Division of Gastroenterology, School of Medicine, University of Washington, Seattle, WA, United States
| | - Linda Yoo
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
| | - Samantha Winders
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
| | - Kevin Cain
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
| | - Rona L Levy
- School of Social Work, University of Washington, Seattle, WA, United States
| | - Neelendu Dey
- Fred Hutchinson Cancer Center, Seattle, WA, United States
| | - Scott Lee
- Division of Gastroenterology, School of Medicine, University of Washington, Seattle, WA, United States
| | | | - Margaret Heitkemper
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
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18
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Sheehan JL, Greene-Higgs L, Swanson L, Higgins PD, Krein SL, Waljee AK, Saini SD, Berinstein JA, Mellinger JL, Piette JD, Resnicow K, Cohen-Mekelburg S. Self-Efficacy and the Impact of Inflammatory Bowel Disease on Patients' Daily Lives. Clin Transl Gastroenterol 2023; 14:e00577. [PMID: 36881812 PMCID: PMC10299768 DOI: 10.14309/ctg.0000000000000577] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/27/2022] [Accepted: 02/24/2023] [Indexed: 03/09/2023] Open
Abstract
INTRODUCTION Self-efficacy, i.e., the confidence in one's capacity to perform a behavior, is crucial to the development of inflammatory bowel disease (IBD) self-management skills. We aimed to measure IBD self-efficacy and the relationship between self-efficacy and the patient-reported impact of IBD on daily life. METHODS We surveyed patients with IBD from a single academic center using the IBD Self-Efficacy Scale (IBD-SES) and patient-reported outcome (PRO) measures. The IBD-SES assesses 4 IBD domains: patients' confidence in managing stress and emotions, symptoms and disease, medical care, and remission. IBD PROs evaluate daily life impact, coping strategies, emotional impact, and systemic symptoms. We examined the association between IBD-SES domains with the lowest scores and IBD daily life impact. RESULTS A total of 160 patients completed the survey. Domain scores on the IBD-SES were lowest for managing stress and emotions (mean 6.76, SD 1.86) and symptoms and disease (mean 6.71, SD 2.12) on a 1-10 scale. Controlling for age, sex, IBD type, disease activity, moderate-to-severe disease, depression and anxiety, a higher confidence in managing stress and emotions (β -0.12, 95% confidence interval -0.20 to -0.05, P = 0.001), and managing symptoms and disease (β -0.28, 95% confidence interval -0.35 to -0.20, P < 0.001) were each associated with lower IBD daily life impact. DISCUSSION Patients with IBD report low confidence in managing stress and emotion and managing symptoms and disease. Higher self-efficacy in these domains was associated with lower IBD daily life impact. Self-management tools that promote self-efficacy in managing these domains have the potential to reduce IBD's daily life impact.
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Affiliation(s)
- Jessica L. Sheehan
- Department of Internal Medicine, Michigan Medicine, Ann Arbor, Michigan, USA
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
| | - LaVana Greene-Higgs
- Department of Internal Medicine, Michigan Medicine, Ann Arbor, Michigan, USA
| | - Linnea Swanson
- Department of Internal Medicine, Michigan Medicine, Ann Arbor, Michigan, USA
| | - Peter D.R. Higgins
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
| | - Sarah L. Krein
- Department of Internal Medicine, Michigan Medicine, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
| | - Akbar K. Waljee
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
| | - Sameer D. Saini
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
| | - Jeffrey A. Berinstein
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
| | - Jessica L. Mellinger
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
- Department of Psychiatry, Michigan Medicine, Ann Arbor, Michigan, USA
| | - John D. Piette
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- University of Michigan School of Public Health, Department of Health Behavior and Health Education, Ann Arbor, Michigan, USA
| | - Ken Resnicow
- University of Michigan School of Public Health, Department of Health Behavior and Health Education, Ann Arbor, Michigan, USA
| | - Shirley Cohen-Mekelburg
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
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19
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Fang YQ, Chong TT, Wu D, Qian L. Psychometric properties of patient-reported outcome measures assessing self-efficacy in patients with inflammatory bowel disease: A systematic review. J Adv Nurs 2023; 79:2136-2147. [PMID: 36814363 DOI: 10.1111/jan.15611] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/13/2022] [Revised: 01/27/2023] [Accepted: 02/11/2023] [Indexed: 02/24/2023]
Abstract
AIMS The aim of this study is to conduct a comprehensive evaluation of the patient-reported outcome measure assessing self-efficacy in patients with inflammatory bowel disease, and recommend the most robust measurement. DESIGN A systematic review of psychometric properties. DATA SOURCES We performed systematic electronic searches in the following databases from inception to 26 May 2022: PubMed, Embase, CINAHL, Web of Science, Cochrane Library, and PsycINFO via OVID. REVIEW METHOD This review evaluated the tools' quality in accordance with the Selection of Consensus-Based Health Measurement Instruments 2018 system Evaluation guidelines. RESULTS Three patient-reported outcome measures were identified in the five included studies. The "IBD-yourself" questionnaire revealed very low evidence for a sufficient hypothesis test for construct validity, moderate evidence for insufficient internal consistency, and very low evidence for uncertain measurement error. Evidence from Inflammatory Bowel Disease Self-Efficacy Scale validated internal consistency, structural validity, criterion validity, and hypothesis test for construct validity. However, evidence of moderate quality corroborated this reliability. The Adolescents and Young Adults Inflammatory Bowel Disease Self-Efficacy Scale demonstrated very low evidence for sufficient internal consistency, moderate evidence for a sufficient hypothesis test for construct and content validity, and very low evidence for uncertain reliability. CONCLUSIONS Compared with the other two measures, the Inflammatory Bowel Disease Self-Efficacy Scale has higher quality evidence of higher overall ratings for some of its psychometric properties, but there were some methodological problems that must be further studied to determine their quality. IMPACT It is uncertain whether a scale to assess self-efficacy in patients with inflammatory bowel disease has good measurement performance in clinical applications. This study first presents the methodological quality and psychometric properties of the self-efficacy scale used to assess patients with inflammatory bowel disease, which is based on the Consensus-Based Health Measurement Instruments standard. This study can help researchers and physicians decide which scale is the most suitable and reliable for patients with inflammatory bowel disease. NO PATIENT OR PUBLIC CONTRIBUTION Because this was a systematic review based on synthesizing information from previous studies, no human participants were included.
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Affiliation(s)
- Yan-Qiu Fang
- School of Nursing, Guizhou University of Traditional Chinese Medicine, Guiyang, China
| | - Ting-Ting Chong
- School of Nursing, Guizhou University of Traditional Chinese Medicine, Guiyang, China
| | - Di Wu
- School of Nursing, Guizhou University of Traditional Chinese Medicine, Guiyang, China
| | - Li Qian
- Department of Gastroenterology, Guizhou Provincial People's Hospital, Guiyang, China
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20
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Tse CS, Melmed GY, Siegel CA, Weng CH, Shah SA, Weaver SA, Oliver BJ, Elwyn G, van Deen WK. Bidirectional Correlations Between Health Confidence and Inflammatory Bowel Disease Activity: A Nationwide Longitudinal Cohort Study. Inflamm Bowel Dis 2023; 29:161-166. [PMID: 35640124 DOI: 10.1093/ibd/izac107] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/15/2022] [Indexed: 02/05/2023]
Abstract
Lay Summary
Health confidence—an individual’s belief in their ability and agency to affect disease outcomes—has bidirectional temporal correlations with inflammatory bowel disease activity. Low health confidence is associated with higher risks for future disease activity, and inflammatory bowel disease flares erode confidence.
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Affiliation(s)
- Chung Sang Tse
- Division of Gastroenterology, University of California, San Diego, La Jolla, CA, USA
| | - Gil Y Melmed
- Inflammatory Bowel and Immunobiology Research Institute, Karsh Division of Digestive and Liver Diseases, Cedars-Sinai, Los Angeles, CA, USA
| | - Corey A Siegel
- Inflammatory Bowel Disease Center, Section of Gastroenterology and Hepatology, Dartmouth Hitchcock Medical Center, Lebanon, NH, USA
| | - Chien-Hsiang Weng
- Department of Family Medicine, Warren Alpert Medical School of Brown University, Providence, RI, USA
| | - Samir A Shah
- Division of Gastroenterology, Warren Alpert Medical School of Brown University, Providence, RI, USA.,Gastroenterology Associates, Providence, RI, USA
| | | | - Brant J Oliver
- Department of Community and Family Medicine, Dartmouth Hitchcock Medical Center, Lebanon, NH, USA.,Department of Psychiatry, Dartmouth Hitchcock Medical Center, Lebanon, NH, USA.,Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA.,Office of Patient Experience, Value Institute Learning Center, Dartmouth Hitchcock Medical Center, Lebanon, NH, USA
| | - Glyn Elwyn
- Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA
| | - Welmoed K van Deen
- Health Technology Assessment Research Group, Erasmus School of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, the Netherlands
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21
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Leung T, Long M, Horst S, Afzali A, Sapir T, Fajardo K, De Felice K, Sandler R, Cross R. A Novel Remote Patient and Medication Monitoring Solution to Improve Adherence and Persistence With Inflammatory Bowel Disease Therapy (ASSIST Study): Protocol for a Randomized Controlled Trial. JMIR Res Protoc 2022; 11:e40382. [PMID: 36520519 PMCID: PMC9801266 DOI: 10.2196/40382] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/17/2022] [Revised: 10/26/2022] [Accepted: 10/28/2022] [Indexed: 12/23/2022] Open
Abstract
BACKGROUND Inflammatory bowel diseases (IBDs) are chronic inflammatory conditions of the gastrointestinal tract. Although adherence to IBD therapies is associated with improved clinical outcomes, overall adherence is poor. Consequently, there is a critical need to develop interventions that monitor adherence in real time and identify reasons for nonadherence to support clinical teams in initiating effective interventions. Recently, electronic- and web-based platforms have been developed to monitor adherence and guide interventions. A novel remote therapy monitoring (RTM) technology, the Tappt digital health system, has been developed to monitor real-time medication adherence patterns through smart label technologies, capture patient-reported outcomes and barriers to care, and process patient data through algorithms that trigger personalized digital and human touch points between clinical visits. Such a digital health solution enables care teams to proactively identify and mitigate nonadherence and worsening clinical outcomes. OBJECTIVE We propose a 12-month multicenter randomized controlled trial to assess the effectiveness of the Tappt digital health system on adherence, clinical outcomes, and health care use among patients diagnosed with IBD starting a new oral or subcutaneous therapy. METHODS The digital health system intervention will provide automatic measurement of medication adherence via smart labels for pill bottles or injectors as well as a monitoring platform for providers. The system will prompt patients to complete a two-item assessment of symptoms monthly using the PRO-2 scales for UC and Crohn disease, from which increased symptoms will be alerted to providers. Participants will be randomized 2:1 to the intervention group or the control group, which will receive standard of care. All participants are required to complete questionnaires at baseline as well as at 12, 26, and 52 weeks. Assuming an adherence rate of 0.65 and 0.9 among control and intervention participants, respectively, we will need to enroll 123 participants: 82 (66.7%) in the intervention group and 41 (33.3%) controls. We will compare adherence as measured by the medication possession ratio, defined as the number of days of supply of medication obtained during the observation period out of the total number of days in the observation period, in participants using the RTM versus those receiving standard of care. We will also compare clinical outcomes and health care use in participants using the RTM versus those receiving standard of care. RESULTS We anticipate starting recruitment in December 2022. CONCLUSIONS Effective medication adherence monitoring and intervention programs need to be cost-efficient, pose little or no burden to the patient, record reliable data in real time, and provide actionable insights to the health care team. We anticipate the Tappt digital health system to improve the medication possession ratio, clinical outcomes, and health care use compared with standard of care. TRIAL REGISTRATION ClinicalTrials.gov NCT05316584; https://clinicaltrials.gov/ct2/show/NCT05316584. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID) PRR1-10.2196/40382.
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Affiliation(s)
| | - Millie Long
- Division of Gastroenterology and Hepatology, Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, NC, United States
| | - Sara Horst
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University School of Medicine, Nashville, TN, United States
| | - Anita Afzali
- Division of Gastroenterology, Department of Medicine, University of Cincinnati College of Medicine, Cincinnati, OH, United States
| | | | | | - Kara De Felice
- Division of Gastroenterology, Department of Medicine, University of Cincinnati College of Medicine, Cincinnati, OH, United States
| | - Robert Sandler
- Division of Gastroenterology and Hepatology, Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, NC, United States
| | - Raymond Cross
- Division of Gastroenterology, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD, United States
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22
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Tse CS, Siegel CA, Weaver SA, Oliver BJ, Bresee C, van Deen WK, Melmed GY. Health Confidence Is Associated With Disease Outcomes and Health Care Utilization in Inflammatory Bowel Disease: A Nationwide Cross-sectional Study. Inflamm Bowel Dis 2022; 28:1565-1572. [PMID: 34893849 DOI: 10.1093/ibd/izab313] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/10/2021] [Indexed: 12/12/2022]
Abstract
BACKGROUND We aimed to examine the associations between health confidence (one's belief on the degree of control on their health and disease), inflammatory bowel disease (IBD) outcomes, and health care utilization among adults with IBD. METHODS In total, 17,205 surveys were analyzed from a cross-sectional sample of IBD patients at 23 gastroenterology (GI) practices participating in the Crohn's and Colitis Foundations' IBD Qorus Learning Health System. We used bivariate analyses and multivariable logistic regression to examine associations between health confidence and disease activity, opioid use, glucocorticoid use, well-being, and health care utilization. We used receiver operating curve analysis to determine a clinically relevant cutoff for health confidence (0-10 Likert scale). RESULTS Health confidence was highly correlated with patients' well-being, symptomatic disease activity, opioid use, and glucocorticoid use (all P < .0001). Health confidence scores <8 had 69% sensitivity for emergency department (ED) visits and 66% for hospitalizations. In patients with inactive disease, patients with low health confidence (<8) were 10 times more likely to call/message the GI office >4 times/month (adjusted odds ratio [aOR], 10.3; 95% CI, 6.1-17.3; P < .0001), 3-4 times more likely to have an IBD-related ED visit (aOR, 4.0; 95% CI, 2.9, 5.4. P < .0001), or hospitalization (aOR, 3.0, 95% CI, 2.1, 4.1, P < .0001) compared with patients with high health confidence (≥8). CONCLUSIONS In a large, national sample of adults with IBD, there were strong associations between patients' health confidence and multiple disease outcome measures. Health confidence scores <8 on a 0-10 Likert scale may be clinically useful to screen for patients who are at risk for ED visits and hospitalizations.
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Affiliation(s)
- Chung Sang Tse
- Inflammatory Bowel Disease Preceptorship, University of California, San Diego, La Jolla, CA, USA
| | - Corey A Siegel
- Section Chief of Gastroenterology and Hepatology, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA
| | | | - Brant J Oliver
- Departments of Community & Family Medicine, Psychiatry, and The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth-Hitchcock Health and Geisel School of Medicine at Dartmouth, Lebanon, NH, USA
| | - Catherine Bresee
- Biostatistics Core, Cedars-Sinai Medical Center, Los Angeles, CA, USA
| | - Welmoed K van Deen
- Assistant Professor, Erasmus School of Health Policy and Management, Health Technology Assessment, Erasmus University Rotterdam, Rotterdam, the Netherlands
| | - Gil Y Melmed
- Co-Director, Cedars-Sinai Inflammatory Bowel Disease Center, Karsh Division of Gastroenterology, Cedars-Sinai, Los Angeles, CA, USA
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23
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Tanaka M, Kawakami A, Sakagami K, Terai T, Fernandez J, Keefer L, Ito H. Development and Validation of a Japanese Version of the Inflammatory Bowel Disease Self-efficacy Scale and Cross-culture Study in Japan and the United States. Inflamm Bowel Dis 2022:6723730. [PMID: 36165952 PMCID: PMC10393207 DOI: 10.1093/ibd/izac196] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/08/2022] [Indexed: 12/09/2022]
Abstract
BACKGROUND Self-efficacy is an important health outcome for patients with inflammatory bowel disease (IBD). We aimed to develop a Japanese version of the IBD-Self-Efficacy Scale (IBD-SES.J) and compare characteristics of self-efficacy of IBD patients with previously reported results from patients in the United States. METHODS We conducted a questionnaire survey of patients with IBD from a specialized IBD clinic and respondents recruited online. Self-efficacy of patients in Japan and the United States were compared by Student t test and Cohen d coefficient to gauge effect size. RESULTS A total of 919 valid responses were obtained: 482 patients from the specialized IBD clinic and 437 patients from the online survey. Significant differences (P < .01) were observed in the following 3 subscales: "managing stress and emotions," "managing symptoms and disease," and "maintaining remission" when comparing remission and active periods; and known-group validity was mostly confirmed. Cronbach's alpha coefficients of each subscale ranged between 0.85 and 0.94. Intraclass correlation coefficients (95% confidence intervals [CIs]) to assess test-retest reliability of each item were between 0.56 (95% CI, 0.47-0.64) and 0.78 (95% CI, 0.73-0.82). Self-efficacy scores for most items in Japanese patients with IBD were lower compared with patients in the United States, with moderate effect size (Cohen d > 0.5), especially in the subscale "managing stress and emotions." CONCLUSIONS The study demonstrates the reliability and validity of the IBD-SESJ. Self-efficacy scores for most items in Japanese patients were lower than those of patients in the United States. Further investigation is required to understand cross-cultural score differences.
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Affiliation(s)
- Makoto Tanaka
- Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
| | - Aki Kawakami
- Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
| | | | - Tomoko Terai
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
| | - Jovelle Fernandez
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan.,Jovelle Fernandez L.L.C., Delaware, USA
| | - Laurie Keefer
- Icahn School of Medicine at Mount Sinai, New York, USA
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24
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Drovetta M, Cramer E, Linafelter A, Sevart J, Maddux M. Impact of Perceived Barriers on Patient Engagement and Attitudes towards Transition and Transfer. CHILDREN 2022; 9:children9091273. [PMID: 36138582 PMCID: PMC9497592 DOI: 10.3390/children9091273] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 07/07/2022] [Revised: 08/08/2022] [Accepted: 08/19/2022] [Indexed: 11/16/2022]
Abstract
Objective: This study is a preliminary evaluation of how perceived barriers towards transition might impact patient attitudes towards their own readiness and ability to transition, self-efficacy towards their IBD, and the allocation of treatment responsibility. Methods: A sample of 81 young adults with IBD were seen for standard care in a Young Adult Clinic (YAC). Patients completed questionnaires on perceived transition barriers; perceived confidence, importance, motivation, and readiness towards transition and transfer; IBD self-efficacy; and allocation of treatment responsibility. Path model analyses were conducted. Results: Not knowing how and who to transfer to and not understanding insurance details were the most commonly endorsed perceived barriers to transition. A significant relationship was found between the attitude toward transition and allocation of treatment responsibility, but no meaningful indirect effects were found from perceived barriers to the allocation of treatment responsibility, using attitudes toward transition as an intervening variable. The relationship between perceived barriers and allocation of treatment responsibility was at least partially explained by examining the intervening effects of attitudes toward transfer and self-efficacy. Conclusions: The study findings carry important implications for targets of clinical intervention to assist young adults with IBD in engaging in their health care and ultimately transferring into adult care.
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Affiliation(s)
- Megan Drovetta
- School of Social Welfare, The University of Kansas, Lawrence, Kansas City, MO 66045, USA
| | - Emily Cramer
- Health Services and Outcomes Research, Children’s Mercy Kansas City, Kansas City, MO 64108, USA
- Department of Pediatrics, School of Medicine, University of Missouri Kansas City, Kansas City, MO 64110, USA
| | - Alaina Linafelter
- Division of Gastroenterology, Children’s Mercy Kansas City, Kansas City, MO 64108, USA
| | - Jordan Sevart
- Division of Gastroenterology, Children’s Mercy Kansas City, Kansas City, MO 64108, USA
| | - Michele Maddux
- Department of Pediatrics, School of Medicine, University of Missouri Kansas City, Kansas City, MO 64110, USA
- Division of Gastroenterology, Children’s Mercy Kansas City, Kansas City, MO 64108, USA
- Division of Developmental and Behavioral Health, Children’s Mercy Kansas City, Kansas City, MO 64108, USA
- Correspondence:
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25
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Khera AJ, Chase JW, Stillman BC, Salzberg M, Thompson AJV, Basnayake C, Wilson-O'Brien A, Kamm MA. Pelvic floor behavioral treatment for fecal incontinence and constipation in quiescent inflammatory bowel disease. Scand J Gastroenterol 2022; 57:807-813. [PMID: 35188055 DOI: 10.1080/00365521.2022.2039280] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/04/2023]
Abstract
BACKGROUND AND AIM Refractory bowel symptoms in quiescent inflammatory bowel disease (IBD) are common but evidence for effective management is limited. We aimed to determine whether behavioral treatment, including pelvic floor muscle training, decreases the severity of functional bowel symptoms in patients with quiescent IBD. Secondary aims were to evaluate the treatment effect on quality of life, psychological well-being and pelvic floor muscle function. METHODS This prospective study included IBD patients in remission with persistent symptoms of fecal incontinence or constipation who received up to six sessions of behavioral treatment at monthly intervals. The primary outcome was patient-rated symptom improvement on a 7-point Likert scale (1 = substantially worse, 7 = substantially better). Secondary outcomes included validated symptom scores, quality-of-life, psychological measures, and transperineal ultrasound assessment of pelvic floor muscle activity. RESULTS Thirty-four patients (median age 38 years; 24 females; 18 ulcerative colitis, 13 Crohn's disease, 3 ileo-anal pouch) were included. Twenty-one of the 29 (72%) patients who completed treatment, or 21 of all 34 (62%) patients, reported moderate or substantial improvement (patient rating of 6 or 7). Symptom scores (p < .001), IBD-specific quality of life (p = .008) and illness perception scores (p = .003) significantly improved. General quality of life, and anxiety and depression scores, did not change significantly. Transperineal ultrasound pelvic floor measures did not correlate with patient-rating of symptom improvement. CONCLUSION Significant symptomatic improvement occurred in a majority of patients with quiescent IBD. Behavioral treatment should be considered for patients with quiescent IBD and ongoing functional bowel symptoms of fecal incontinence, fecal urgency, or constipation.
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Affiliation(s)
- Angela J Khera
- Department of Gastroenterology, St. Vincent's Hospital, Melbourne, Australia.,Department of Medicine, The University of Melbourne, Melbourne, Australia
| | - Janet W Chase
- Department of Gastroenterology, St. Vincent's Hospital, Melbourne, Australia
| | - Barry C Stillman
- School of Physiotherapy, The University of Melbourne, Melbourne, Australia
| | - Michael Salzberg
- Department of Medicine, The University of Melbourne, Melbourne, Australia
| | - Alexander J V Thompson
- Department of Gastroenterology, St. Vincent's Hospital, Melbourne, Australia.,Department of Medicine, The University of Melbourne, Melbourne, Australia
| | - Chamara Basnayake
- Department of Gastroenterology, St. Vincent's Hospital, Melbourne, Australia.,Department of Medicine, The University of Melbourne, Melbourne, Australia
| | - Amy Wilson-O'Brien
- Department of Medicine, The University of Melbourne, Melbourne, Australia
| | - Michael A Kamm
- Department of Gastroenterology, St. Vincent's Hospital, Melbourne, Australia.,Department of Medicine, The University of Melbourne, Melbourne, Australia
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26
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Yang YX, Zhang L, Zhao YY, Hao N, Wang BB, Lin YP. Self-efficacy of patients with inflammatory bowel disease: A review. Shijie Huaren Xiaohua Zazhi 2022; 30:425-430. [DOI: 10.11569/wcjd.v30.i10.425] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/06/2023] Open
Abstract
Inflammatory bowel disease (IBD) is a chronic, recurrent, and incurable intestinal disease, which is easy to bring heavy physical and mental damage to patients, and self-efficacy is an important factor affecting physical and mental health. This article reviews the self-efficacy of patients with IBD, focusing on the measurement tools, influencing factors, influence on patients, and improvement measures, in order to provide reference for related research in the future.
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Affiliation(s)
- Ya-Xin Yang
- Nursing Department, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Li Zhang
- Nursing Department, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Yue-Yue Zhao
- Nursing Department, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Na Hao
- Department of Gastroenterology, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Bin-Bin Wang
- Department of Gastroenterology, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Yu-Peng Lin
- Nursing Department, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
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27
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Rohde JA, Fisher EB, Boynton MH, Freelon D, Frohlich DO, Barnes EL, Noar SM. A Self-management SMS Text Messaging Intervention for People With Inflammatory Bowel Disease: Feasibility and Acceptability Study. JMIR Form Res 2022; 6:e34960. [PMID: 35522471 PMCID: PMC9123538 DOI: 10.2196/34960] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/15/2021] [Revised: 03/04/2022] [Accepted: 04/10/2022] [Indexed: 11/15/2022] Open
Abstract
BACKGROUND Mobile health technologies can be useful for providing disease self-management information and support to people with inflammatory bowel disease (IBD). OBJECTIVE The aim of this study was to test a self-management SMS text messaging intervention for people with IBD. Our goal was to examine intervention feasibility, acceptability, and engagement and to preliminarily evaluate improvements in certain self-reported health outcomes among participants. METHODS We developed an SMS text messaging program called Text4IBD. The program sent daily support messages and resources about disease self-management over the course of a 2-week, single-group, pretest-posttest intervention to participants (N=114) diagnosed with IBD. We examined intervention feasibility, acceptability, and engagement through Text4IBD message topic recall and use of resources (ie, visiting supplemental websites recommended by the Text4IBD program). We also assessed pretest-posttest measures of IBD-related distress, self-efficacy, perceived support, use of coping strategies, and medication adherence. Analyses examined participants' evaluations of the intervention and compared pretest-posttest changes in secondary outcomes using paired-samples statistics. RESULTS Approximately all participants who completed the intervention (n=105) were receptive to Text4IBD and viewed the program as feasible and acceptable. In addition, most participants (103/105, 98.1%) recalled at least one of the message topics sent by the program, and 79% (83/105) of them self-reported engaging with at least one of the external self-management resources recommended by the Text4IBD program. Pretest-posttest results showed reduced IBD-related distress (mean 3.33, SD 0.68 vs mean 2.86, SD 0.73; P<.001) and improvements in most other secondary outcomes. CONCLUSIONS Findings from this study highlight the value of SMS text messaging as a useful digital medium for providing support to people with IBD, particularly to those who may struggle with disease-related distress. Text4IBD was highly feasible and acceptable and may help people self-manage their IBD. Future studies should aim to evaluate this program in a randomized controlled trial in clinical settings.
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Affiliation(s)
- Jacob A Rohde
- Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
| | - Edwin B Fisher
- Department of Health Behavior, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
| | - Marcella H Boynton
- North Carolina Translational and Clinical Sciences Institute, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
| | - Deen Freelon
- Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
| | - Dennis O Frohlich
- Department of Media and Journalism, Bloomsburg University of Pennsylvania, Bloomsburg, PA, United States
| | - Edward L Barnes
- Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
| | - Seth M Noar
- Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
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28
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Keefer L, Bedell A, Norton C, Hart AL. How Should Pain, Fatigue, and Emotional Wellness Be Incorporated Into Treatment Goals for Optimal Management of Inflammatory Bowel Disease? Gastroenterology 2022; 162:1439-1451. [PMID: 34995528 DOI: 10.1053/j.gastro.2021.08.060] [Citation(s) in RCA: 48] [Impact Index Per Article: 16.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/21/2021] [Revised: 08/10/2021] [Accepted: 08/14/2021] [Indexed: 12/16/2022]
Abstract
Early diagnosis and the optimal control of inflammation, with a continuous cycle of assessment, treatment, monitoring, and adjustment of therapy, is best practice for the management of inflammatory bowel disease. However, patients express frustration with ongoing challenging symptoms, often discordant with inflammation, including abdominal pain, fatigue, depression, anxiety, and emotional wellness; these are often not optimally addressed by inflammatory bowel disease clinicians due to lack of time or resources. This review will highlight the burden of these symptoms and issues, suggest ways of assessing these in clinical practice, highlight the importance of acknowledging and validating the symptoms and issues with patients, reassuring them that they are being heard, and discuss different possible models of service delivery for psychosocial support, from fully integrated gastropsychology models to referral pathways that optimize community support. We suggest the importance of the treat-to-target concept, where the target is not only control of inflammation but also emotional wellness.
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Affiliation(s)
- Laurie Keefer
- Department of Medicine-Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, New York.
| | - Alyse Bedell
- Department of Psychiatry and Behavioral Neuroscience, The University of Chicago, Chicago, Illinois
| | - Christine Norton
- Florence Nightingale School of Nursing, Midwifery and Palliative Care, King's College London, London, United Kingdom
| | - Ailsa L Hart
- IBD Unit, St Mark's, The National Bowel Hospital, London, United Kingdom
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Stone JK, Shafer LA, Graff LA, Witges K, Sexton K, Lix LM, Haviva C, Targownik LE, Bernstein CN. The association of efficacy, optimism, uncertainty and health anxiety with inflammatory bowel disease activity. J Psychosom Res 2022; 154:110719. [PMID: 35065327 DOI: 10.1016/j.jpsychores.2022.110719] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/28/2021] [Revised: 01/02/2022] [Accepted: 01/06/2022] [Indexed: 12/19/2022]
Abstract
OBJECTIVE Positive and negative psychological attributes have been shown to influence disease outcomes in many chronic health conditions. We aimed to evaluate the association between self-efficacy, optimism, health anxiety and intolerance of uncertainty and disease activity in inflammatory bowel disease (IBD). METHODS Adults with confirmed and recently active IBD enrolled in a prospective cohort study. Demographics, disease information, validated measures of psychological functioning related to general self-efficacy, optimism, health anxiety and intolerance of uncertainty were collected at baseline, week 26 and week 52. Clinical disease activity was assessed using the Inflammatory Bowel Disease Symptom Inventory (IBDSI), self-reported flares, and intestinal inflammation using fecal calprotectin (FCAL), collected at baseline, weeks 26 and 52. Generalized estimating equations were used to test the association between psychological functioning and disease activity. RESULTS Participants' (n = 154) mean age was 43.4 years (SD 12.5), 69.5% were women and 64.1% had Crohn's disease. Adjusting for demographic variables, higher self-efficacy was associated with lower likelihood of flare by self-report (odds ratio [OR] 0.80, 95% confidence interval [CI] 0.71, 0.91) and IBDSI (OR 0.89, 95% CI 0.80, 0.99), while higher health anxiety was associated with greater likelihood of flare by self-report (OR 1.07, 95% CI 1.01, 1.18) and higher symptomatic disease activity (IBDSI; OR 1.14, 95% CI 1.05, 1.24). The psychological attributes were not significantly associated with active disease as measured by inflammation (FCAL). CONCLUSION General self-efficacy and health anxiety are relevant in understanding patient experience with disease activity, and may be appropriate targets for psychological intervention in the care of individuals with IBD.
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Affiliation(s)
- James K Stone
- Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada; University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada
| | - Leigh Anne Shafer
- Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada; University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada
| | - Lesley A Graff
- University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada; Department of Clinical Health Psychology, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada
| | - Kelcie Witges
- University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada
| | - Kathryn Sexton
- University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada; Department of Clinical Health Psychology, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada
| | - Lisa M Lix
- University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada; Department of Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada
| | - Clove Haviva
- University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada
| | - Laura E Targownik
- University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada; Division of Gastroenterology, Mount Sinai Hospital, University of Toronto, Toronto, Ontaio, Canada
| | - Charles N Bernstein
- Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada; University of Manitoba IBD Clinical and Research Centre, Winnipeg, MB, Canada.
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Huang Y, Wang Y, Chen Y, Gu X, Yang J, Ma B, Zhang Y, Lu Q, Zhao Y. Measuring self-efficacy in defecation: Validation and utilization of a Chinese version of the self-efficacy for functional constipation questionnaire (SEFCQ) in a pediatric population. Neurogastroenterol Motil 2022; 34:e14255. [PMID: 34494345 DOI: 10.1111/nmo.14255] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/29/2020] [Revised: 08/19/2021] [Accepted: 08/19/2021] [Indexed: 12/22/2022]
Abstract
BACKGROUND Self-efficacy in defecation plays an important role on behavioral therapy for functional constipation (FC). There is an unmet need for valid child self-report measures of task-specific self-efficacy for pediatric FC. Our aim was to cross-culturally validate the Self-Efficacy for Functional Constipation Questionnaire (SEFCQ) and to explore the salient factor(s) of self-efficacy in defecation that correlate with anxiety and constipation symptom severity among Chinese children. METHODS The SEFCQ was adapted to Chinese version following the Rome Foundation guidelines for the translation of questionnaires. Two hundred and three children with FC were involved in psychometric testing. Confirmatory factor analysis was conducted to determine the structure of the SEFCQ. Construct validity was evaluated by testing the relationship between the SEFCQ and both anxiety and the Patient Assessment of Constipation Symptoms (PAC-SYM). Test-retest reliability, internal consistency, and interfactor correlation were used to evaluate reliability. Hierarchical multiple regression was used to identify salient self-efficacy for FC that correlates with anxiety and constipation symptom severity. KEY RESULTS Confirmatory factor analysis supports the two-factor structure of the SEFCQ. Adequate test-retest reliability (r = 0.973, p<0.001) and internal consistency (Cronbach's α = 0.871) were obtained. Both self-efficacy factors were significantly associated with anxiety (r = -0.227 to -0.350, p<0.001) and PAC-SYM (r = -0.495 to -0.602, p<0.001), with emotional self-efficacy being the most salient factor for predicting the symptom severity of constipation after controlling for sex, age, quality of parents' marriage, and family history. CONCLUSION AND INFERENCES The SEFCQ showed satisfactory psychometric properties. Low self-efficacy in defecation correlates with anxiety and may contribute to poor adherence to behavior change, which exacerbates the symptoms of constipation. Further study is needed to apply social cognitive intervention to increase children's self-efficacy in defecation and assess its effect on treatment outcomes.
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Affiliation(s)
- Yaqi Huang
- School of Nursing, Tianjin Medical University, Tianjin, China
| | - Yulu Wang
- School of Nursing, Tianjin Medical University, Tianjin, China
| | - Ying Chen
- School of Nursing, Tianjin Medical University, Tianjin, China
| | - Xiaoling Gu
- First Teaching Hospital of Tianjin University of Traditional Chinese Medicine, Tianjin, China
| | - Jin Yang
- School of Nursing, Tianjin Medical University, Tianjin, China
| | - Bingxin Ma
- School of Nursing, Tianjin Medical University, Tianjin, China
| | - Yanwen Zhang
- School of Nursing, Tianjin Medical University, Tianjin, China
| | - Qi Lu
- School of Nursing, Tianjin Medical University, Tianjin, China
| | - Yue Zhao
- School of Nursing, Tianjin Medical University, Tianjin, China
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Kantidakis JD, Moulding R, Knowles SR. Psychological mediators of psychological distress and quality of life in inflammatory bowel disease. J Psychosom Res 2021; 149:110596. [PMID: 34418720 DOI: 10.1016/j.jpsychores.2021.110596] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/26/2020] [Revised: 08/01/2021] [Accepted: 08/03/2021] [Indexed: 12/11/2022]
Abstract
BACKGROUND AND AIMS Using the Common Sense Model (CSM), this study aimed to examine the extent to which illness beliefs, coping styles, self-efficacy, and mindfulness mediate this relationship. METHODS Two hundred and sixty-one adults (198 females; 169 with Crohn's Disease) with IBD participated in this cross-sectional study. Measures used in this study were the short Crohn's Disease Activity Index, Ulcerative Colitis Lichtiger Index, Inflammatory Bowel Disease Questionnaire, New General Self-Efficacy Scale, Carver Brief COPE scale, Mindful Attention Awareness Scale, Brief Illness Perceptions Questionnaire, and the Depression and Anxiety Stress Scales. RESULTS Using structural equation modelling, the final model indicated IBD symptoms had a significant direct influence only on illness perceptions (β = 0.66, p < .001). In turn, illness perceptions had a significant direct influence on depression and anxiety (β = 0.34, p < .001) and QoL (β = -0.67, p < .001), and was also linked to higher maladaptive coping (β = 0.28, p < .001) and lower self-efficacy (β = -0.49, p < .001), but not with mindfulness or adaptive coping (p > .05). Maladaptive coping (β = 0.46, p < .001) and mindfulness (β = 0.23, p < .001) were linked with increased distress. QoL was influenced by distress (β = -0.40, p < .001). CONCLUSIONS Consistent with the predictions of the CSM, the relationships between IBD symptoms and depression and anxiety, and between IBD symptoms and quality of life, are statistically mediated via psychological variables including illness perceptions and maladaptive coping.
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Affiliation(s)
- J D Kantidakis
- Department of Psychology, Swinburne University of Technology, Melbourne, Australia; The Gut Centre, Melbourne, Australia; Department of Gastroenterology, St Vincent's Hospital, Melbourne, Australia
| | - R Moulding
- The Cairnmillar Institute, Melbourne, Australia; Deakin University, Geelong, Australia
| | - S R Knowles
- Department of Psychology, Swinburne University of Technology, Melbourne, Australia; Department of Mental Health, St Vincent's Hospital, Melbourne, Australia; Department of Psychiatry, The University of Melbourne, Melbourne, Australia.
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Waschmann M, Lin HC, Stellway JE. 'Adulting' with IBD: Efficacy of a Novel Virtual Transition Workshop for Pediatric Inflammatory Bowel Disease. J Pediatr Nurs 2021; 60:223-229. [PMID: 34280734 DOI: 10.1016/j.pedn.2021.07.002] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/15/2020] [Revised: 07/03/2021] [Accepted: 07/05/2021] [Indexed: 02/07/2023]
Abstract
PURPOSE The rising prevalence of IBD in children corresponds with a need for patient education on transition to adult care. The objective of this study was to design, implement and evaluate a novel transitions program for adolescents with Inflammatory Bowel Disease and their parents, and to assess the impact of this program on transition readiness skills, self-efficacy and participant satisfaction. DESIGN AND METHODS Sixteen adolescent-parent dyads participated in the virtual transition workshop. Workshop programming was designed utilizing a biopsychosocial and multidisciplinary approach to IBD management and engagement with healthcare resources. The impact of the workshop was measured utilizing validated self- and parent-report measures of transition readiness (TRAQ), self-efficacy (IBD-SES), depression (PHQ8) and anxiety (GAD7). RESULTS Over 60% of participants found the workshop helpful and 92% would recommend it to other teens with IBD. The average adolescent transition readiness score (TRAQ) significantly increased by 5.00 points following the workshop (SD = 7.49, p = 0.04), while total parent scores increased by 10.55 points (SD = 11.15, p = 0.011). As was expected, this demonstrates increased transition readiness skills. The average total adolescent IBD-SES score decreased by 6.75 (SD = 8.95, p = 0.024). CONCLUSION This novel transition program resulted in increased participant transition readiness, as reported by adolescent and parents, indicating the workshop's utility in promoting tangible skill development. Self-efficacy scores did not increase; self-efficacy is a delayed measure of program success and is tied to disease status and other stressors which also changed across time points. PRACTICE IMPLICATIONS Future directions include continuing the virtual program for increased participation and dissemination, integrating feedback and increasing interdisciplinary involvement.
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Affiliation(s)
- Malika Waschmann
- MD Program, School of Medicine, Oregon Health and Science University, Portland, OR, Oregon Health and Science School of Medicine, OR, United States.
| | - Henry C Lin
- Division of Pediatric Gastroenterology, Doernbecher Children's Hospital, Department of Pediatrics, Oregon Health & Science University, OR, United States.
| | - Jacklyn E Stellway
- Division of Pediatric Psychology, Institute on Development and Disability, Doernbecher Children's Hospital, Department of Pediatrics, Oregon Health & Science University, OR, United States.
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Mitrani R, Kohut T, Panganiban J, Carr RM. Transition of Care Model for Pediatric Patients With Nonalcoholic Fatty Liver Disease. Clin Liver Dis (Hoboken) 2021; 18:30-36. [PMID: 34484702 PMCID: PMC8405046 DOI: 10.1002/cld.1093] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/28/2020] [Revised: 12/18/2020] [Accepted: 01/03/2021] [Indexed: 02/06/2023] Open
Affiliation(s)
- Robert Mitrani
- Division of Gastroenterology and HepatologyUniversity of PennsylvaniaPhiladelphiaPA
| | - Taisa Kohut
- Division of Gastroenterology, Hepatology and NutritionChildren’s Hospital of PhiladelphiaPhiladelphiaPA
| | - Jennifer Panganiban
- Division of Gastroenterology, Hepatology and NutritionChildren’s Hospital of PhiladelphiaPhiladelphiaPA
| | - Rotonya M. Carr
- Division of Gastroenterology and HepatologyUniversity of PennsylvaniaPhiladelphiaPA
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Rhodes KA, Walker JT, Zhang L, Carr KL, Winters KP, Glover SC. The Impact of Transition Readiness and Stress on Patient-Centered Outcomes in Young Adults With Inflammatory Bowel Disease. Gastroenterol Nurs 2021; 44:259-267. [PMID: 34238884 DOI: 10.1097/sga.0000000000000555] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/02/2020] [Accepted: 08/08/2020] [Indexed: 12/13/2022] Open
Abstract
Young adults, 18-35 years of age, account for nearly half of all inflammatory bowel disease emergency department visits annually, costing millions of healthcare dollars and signifying undue pain and suffering. To mitigate this sequela, the study aimed to characterize the relationships between transition readiness (self-management ability), stress, and patient-centered outcomes. Outcomes were defined as disease activity and inflammatory bowel disease-related healthcare utilization (emergency department visits and inpatient hospitalization). This was a descriptive, correlational design via online survey of young adults with inflammatory bowel disease. Participants (n = 284) utilized an estimated 2.77 million healthcare dollars in 12 months. Transition readiness decreased the odds of having consistently active disease and healthcare utilization, with adjusted odds ratio ranging from 6.4 to 10.9 (p < .05). Higher stress levels increased the odds of having consistently active disease and healthcare utilization, with adjusted odds ratio ranging from 9.5 to 10.5 (p < .0001). Twenty-five percent (24.7%) of the variation in transition readiness was explained by changes in stress (p < .0001). Transition readiness and stress impacted all patient-centered outcomes. Stress negatively impacted transition readiness. These results are powerful reminders for healthcare providers to assess and treat stress and support transition readiness in young adults with inflammatory bowel disease. The potential to decrease pain, suffering, and healthcare cost is enormous.
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Affiliation(s)
- Kathleen A Rhodes
- Kathleen A. Rhodes, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Jean T. Walker, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Lei Zhang, PhD, MBA, is Professor, University of Mississippi Medical Center School of Nursing and Director, Mississippi State Department of Health, Office of Health Data & Research, Jackson
- Kayla L. Carr, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Karen P. Winters, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Sarah C. Glover, DO, AGAF, is Professor, Division of Digestive Diseases, Department of Medicine, University of Mississippi Medical Center, Jackson
| | - Jean T Walker
- Kathleen A. Rhodes, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Jean T. Walker, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Lei Zhang, PhD, MBA, is Professor, University of Mississippi Medical Center School of Nursing and Director, Mississippi State Department of Health, Office of Health Data & Research, Jackson
- Kayla L. Carr, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Karen P. Winters, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Sarah C. Glover, DO, AGAF, is Professor, Division of Digestive Diseases, Department of Medicine, University of Mississippi Medical Center, Jackson
| | - Lei Zhang
- Kathleen A. Rhodes, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Jean T. Walker, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Lei Zhang, PhD, MBA, is Professor, University of Mississippi Medical Center School of Nursing and Director, Mississippi State Department of Health, Office of Health Data & Research, Jackson
- Kayla L. Carr, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Karen P. Winters, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Sarah C. Glover, DO, AGAF, is Professor, Division of Digestive Diseases, Department of Medicine, University of Mississippi Medical Center, Jackson
| | - Kayla L Carr
- Kathleen A. Rhodes, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Jean T. Walker, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Lei Zhang, PhD, MBA, is Professor, University of Mississippi Medical Center School of Nursing and Director, Mississippi State Department of Health, Office of Health Data & Research, Jackson
- Kayla L. Carr, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Karen P. Winters, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Sarah C. Glover, DO, AGAF, is Professor, Division of Digestive Diseases, Department of Medicine, University of Mississippi Medical Center, Jackson
| | - Karen P Winters
- Kathleen A. Rhodes, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Jean T. Walker, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Lei Zhang, PhD, MBA, is Professor, University of Mississippi Medical Center School of Nursing and Director, Mississippi State Department of Health, Office of Health Data & Research, Jackson
- Kayla L. Carr, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Karen P. Winters, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Sarah C. Glover, DO, AGAF, is Professor, Division of Digestive Diseases, Department of Medicine, University of Mississippi Medical Center, Jackson
| | - Sarah C Glover
- Kathleen A. Rhodes, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Jean T. Walker, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Lei Zhang, PhD, MBA, is Professor, University of Mississippi Medical Center School of Nursing and Director, Mississippi State Department of Health, Office of Health Data & Research, Jackson
- Kayla L. Carr, PhD, RN, FNP-C, is Assistant Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Karen P. Winters, PhD, RN, is Professor, University of Mississippi Medical Center School of Nursing, Jackson
- Sarah C. Glover, DO, AGAF, is Professor, Division of Digestive Diseases, Department of Medicine, University of Mississippi Medical Center, Jackson
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Johnson LE, Lee MJ, Turner-Moore R, Grinsted Tate LR, Brooks AJ, Tattersall RS, Jones GL, Lobo AJ. Systematic Review of Factors Affecting Transition Readiness Skills in Patients with Inflammatory Bowel Disease. J Crohns Colitis 2021; 15:1049-1059. [PMID: 33252669 DOI: 10.1093/ecco-jcc/jjaa245] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/01/2023]
Abstract
BACKGROUND AND AIMS The incidence of inflammatory bowel disease [IBD] diagnosed before adulthood is increasing worldwide. Transition from paediatric to adult health care requires certain skills. The aim of this study was to identify factors affecting these skills. METHODS This review was registered on the PROSPERO database [CRD42019152272]. Inclusion criteria were: 1] studies of factors affecting transition readiness skills in patients with IBD; 2] written in English; 3] published since 1999. MEDLINE, CINAHL, and PsychINFO databases were searched between 1999 and 2019. Quality was assessed using the Joanna Briggs Institute critical appraisal tools. RESULTS Searches identified 822 papers. Sixteen papers were included. Age was positively associated with skills including disease knowledge and performing self-management behaviours [14 studies]. Improvement often occurs at 18; however, skill deficiency may still remain. Increased self-efficacy [confidence] was associated with greater disease knowledge and performing self-management behaviours [three studies]. Self-efficacy was positively correlated with transition duration [two studies] and health-related quality of life [r = 0.57, p <0.001] [one study], negatively correlated with depression [r = -0.57, p <0.001] and anxiety [r = -0.23, p = 0.03] [one study], and was associated with higher education level [two studies] and a family history of IBD [one study]. Females had higher self-management scores [three studies], and greater health care satisfaction was significantly associated with higher knowledge [one study]. Greater transition communication improved knowledge, self-management, and overall transition readiness [two studies]. CONCLUSIONS Potentially modifiable factors have been identified that could be supported in the transitioning IBD population, to improve transition readiness. Identification of those with non-modifiable characteristics associated with poor readiness may aid targeted support.
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Affiliation(s)
| | - Matthew J Lee
- Department of Oncology and Metabolism, University of Sheffield Medical School, Sheffield, UK
- Academic Directorate of General Surgery, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
| | - Rhys Turner-Moore
- Department of Psychology, School of Social Sciences, Leeds Beckett University, Leeds, UK
| | | | - Alenka J Brooks
- Academic Department of Gastroenterology, University of Sheffield and Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
| | - Rachel S Tattersall
- Department of Rheumatology, Sheffield Teaching Hospitals NHS Foundation Trust and Sheffield Children's Hospitals, Sheffield, UK
| | - Georgina L Jones
- Department of Psychology, School of Social Sciences, Leeds Beckett University, Leeds, UK
| | - Alan J Lobo
- Academic Department of Gastroenterology, University of Sheffield and Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
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Does Parenting Style Affect Adolescent IBD Transition Readiness and Self-Efficacy Scores? CHILDREN-BASEL 2021; 8:children8050367. [PMID: 34064470 PMCID: PMC8147961 DOI: 10.3390/children8050367] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 03/28/2021] [Revised: 04/21/2021] [Accepted: 04/27/2021] [Indexed: 11/22/2022]
Abstract
Background: Transition to adult-centered care requires adolescents with inflammatory bowel disease (IBD) to acquire a set of independent self-management skills. Transition success can be affected by maturity, cognitive development, and many other factors. Our hypothesis was that parenting style would be associated with increased self-efficacy and therefore transitions readiness. Methods: A prospective cohort survey study of adolescents with IBD and their parents from October 2018 to October 2019 was performed. Participants completed the IBD-Self-Efficacy Scale- Adolescent questionnaire (IBD-SES-A) and the Transition Readiness Assessment Questionnaire (TRAQ). Parents completed the Parent Styles and Dimensions Questionnaire (PSDQ-short form). Demographic and disease information were also collected. Results: Sixty-nine participants were included for full analysis (36 males and 33 females); mean age was 18.2 years, and average age of IBD diagnosis 13 years. Overall, 83% of participants were non-Hispanic Caucasian, and 84% reported parental annual income over USD 100,000. All 69 parents reported an authoritative parenting style. Females have significantly higher TRAQ scores than males (p = 0.0004). TRAQ scores differed significantly between age groups, with 20 to 22 years old having higher scores (p ≤ 0.0001). TRAQ and IBD-SES-A scores did not differ by parental education or parenting style. Conclusion: Given the inability to delineate different parenting, this study was unable to demonstrate a protective parenting style associated with better transitions readiness and self-efficacy scores in adolescents with IBD. Within the context of authoritative parenting, we did find that females and older adolescents had higher transition readiness scores. Additional research into psychosocial determinants of transition readiness, and the importance of multidisciplinary management with an integrated team including psychologist and social workers, can help improve IBD transition outcomes.
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Schurman JV, Friesen CA. Leveraging Institutional Support to Build an Integrated Multidisciplinary Care Model in Pediatric Inflammatory Bowel Disease. CHILDREN (BASEL, SWITZERLAND) 2021; 8:286. [PMID: 33917659 PMCID: PMC8067987 DOI: 10.3390/children8040286] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 03/11/2021] [Revised: 04/02/2021] [Accepted: 04/06/2021] [Indexed: 11/16/2022]
Abstract
While the biopsychosocial nature of inflammatory bowel disease (IBD) is now well accepted by clinicians, the need for integrated multidisciplinary care is not always clear to institutional administrators who serve as decision makers regarding resources provided to clinical programs. In this commentary, we draw on our own experience in building successful integrated care models within a division of pediatric gastroenterology (GI) to highlight key considerations in garnering initial approval, as well as methods to maintain institutional support over time. Specifically, we discuss the importance of making a strong case for the inclusion of a psychologist in pediatric IBD care, justifying an integrated model for delivering care, and addressing finances at the program level. Further, we review the benefit of collecting and reporting program data to support the existing literature and/or theoretical projections, demonstrate outcomes, and build alternative value streams recognized by the institution (e.g., academic, reputation) alongside the value to patients. Ultimately, success in garnering and maintaining institutional support necessitates moving from the theoretical to the practical, while continually framing discussion for a nonclinical/administrative audience. While the process can be time-consuming, ultimately it is worth the effort, enhancing the care experience for both patients and clinicians.
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Affiliation(s)
- Jennifer Verrill Schurman
- Division of Gastroenterology, Hepatology & Nutrition, Children’s Mercy Kansas City, 2401 Gillham Road, Kansas City, MO 64108, USA;
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Empowered transitions: Understanding the experience of transitioning from pediatric to adult care among adolescents with inflammatory bowel disease and their parents using photovoice. J Psychosom Res 2021; 143:110400. [PMID: 33631616 PMCID: PMC8098753 DOI: 10.1016/j.jpsychores.2021.110400] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/26/2020] [Revised: 02/12/2021] [Accepted: 02/12/2021] [Indexed: 12/19/2022]
Abstract
OBJECTIVE To identify barriers and facilitators of pediatric to adult transitions among adolescents with IBD and their parents. METHODS This cross-sectional study used photovoice to explore adolescent and parent perspectives on transitions in IBD care. Adolescents with IBD aged 14-23 and their parents were recruited from an urban IBD center during clinic visits. Participants completed a survey, took photos, participated in a semi-structured interview, and optionally participated in a focus group. Interviews were recorded and transcribed. Two analysts coded interview data for themes using MAXQDA software. RESULTS Thirteen adolescents and eleven parents submitted photos and participated in an interview. The mean patient age was 19.0 ± 3.0. The mean parent age was 51.5 ± 5.4. Eleven (84.6%) adolescents were Caucasian; 12 (92.3%) privately insured; 4 (30.8%) in high school, 5 (38.4%) in college, and 4 (30.8%) in the workforce. Adolescent transition-readiness, resilience, and IBD-related self-efficacy scores were relatively high, with high agreement between patient self-report and parent-reported children's resilience; parents over-estimated their children's IBD-related self-efficacy. Participants discussed barriers to transitions including psychological distress, disease uncertainty, gut-brain axis-related issues, a lack of understanding by people unaffected by IBD, and frequent life disruptions. Facilitators of transitions included having a disease narrative, deliberately shifting responsibility for disease management tasks, positivity/optimism, social support, engagement with the IBD community, and mental health support. CONCLUSION Attention to psychosocial issues is warranted during the transition process from pediatric to adult IBD care, specifically related to understanding the gut-brain axis and accessing resources to optimize mental health and well-being among transition-aged adolescents and their caregivers.
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Vernon-Roberts A, Gearry RB, Day AS. Overview of Self-Management Skills and Associated Assessment Tools for Children with Inflammatory Bowel Disease. GASTROINTESTINAL DISORDERS 2021; 3:61-77. [DOI: 10.3390/gidisord3020007] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/19/2022] Open
Abstract
Self-management is a multi-modal approach for managing chronic conditions that encompasses a number of different elements; knowledge, adherence, self-regulation, communication, and cognitive factors. Self-management has been shown to be beneficial for adults with inflammatory bowel disease (IBD), and for children with IBD it may help them learn to take control of their complex treatment regimens and lead to positive disease outcomes. The development of self-management skills for children with IBD is vital in order to maximize their potential for health autonomy, but it is still an emergent field in this population. This review provides an over-arching view of the self-management elements specific to children with IBD, and highlights outcome measures that may be used to assess skills within each field as well as the efficacy of targeted interventions.
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Affiliation(s)
| | - Richard B. Gearry
- Department of Paediatrics, University of Otago, Christchurch 8011, New Zealand
| | - Andrew S. Day
- Department of Paediatrics, University of Otago, Christchurch 8011, New Zealand
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Hayes B, Moller S, Wilding H, Burgell R, Apputhurai P, Knowles SR. Application of the common sense model in inflammatory bowel disease: A systematic review. J Psychosom Res 2020; 139:110283. [PMID: 33161175 DOI: 10.1016/j.jpsychores.2020.110283] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/10/2020] [Revised: 10/22/2020] [Accepted: 10/23/2020] [Indexed: 12/19/2022]
Abstract
BACKGROUND AND AIMS The aim of this paper was to undertake a systematic review of the research utilizing the Common Sense Model (CSM) involving IBD cohorts to explain the psychosocial processes, including illness perceptions and coping styles, that underpin patient reported outcomes (PROs) - psychological distress (PD) and quality of life (QoL). METHODS Adult studies were identified through systematic searches of 8 bibliographic databases run in August 2020 including Medline, Embase, and PsychINFO. No language or year limits were applied. RESULTS Of 848 records identified, 516 were selected with seven studies evaluating the CSM mediating pathways for final review (n = 918 adult participants). Consistent with the CSM, illness perceptions were associated with PD and QoL in six and five studies respectively. Illness perceptions acted as mediators, at least partially, on the relationship between IBD disease activity and PD and/or QoL in all seven studies. Coping styles, predominantly maladaptive-based coping styles, were found to act as mediators between illness perceptions and PD and/or QoL in five studies. Perceived stress was identified in one study as an additional psychosocial process that partially explained the positive influence of illness perceptions on PD, and a negative impact on QoL. Five studies were classified as high quality and two as moderate. CONCLUSIONS The CSM can be utilised in IBD cohorts to evaluate key psychosocial processes that influence PROs. Future research should explore additional psychosocial processes within the CSM and evaluate the efficacy of targeting CSM processes to promote psychological well-being and QoL in IBD cohorts.
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Affiliation(s)
- Bree Hayes
- Department of Psychological Sciences, Faculty of Health, Arts and Design, Swinburne University of Technology, PO Box 218, Hawthorn, Victoria 3122, Australia
| | - Stephan Moller
- Department of Psychological Sciences, Faculty of Health, Arts and Design, Swinburne University of Technology, PO Box 218, Hawthorn, Victoria 3122, Australia
| | - Helen Wilding
- St Vincent's Hospital Library Service, St Vincent's Hospital Melbourne, PO Box 2900, Fitzroy, Victoria 3065, Australia
| | - Rebecca Burgell
- Department of Gastroenterology, Alfred Health, PO Box 315, Prahran, Victoria 3181, Australia
| | - Pragalathan Apputhurai
- Department of Statistics Data Science and Epidemiology, Swinburne University of Technology, PO Box 218, Hawthorn, Victoria 3122, Australia
| | - Simon R Knowles
- Department of Psychological Sciences, Faculty of Health, Arts and Design, Swinburne University of Technology, PO Box 218, Hawthorn, Victoria 3122, Australia; Department of Gastroenterology, Alfred Health, PO Box 315, Prahran, Victoria 3181, Australia; Department of Mental Health, St Vincent's Hospital, 41 Victoria Parade, Fitzroy, Victoria 3065, Australia; Department of Psychiatry, The University of Melbourne, Melbourne, Vic, 3010, Australia; Department of Gastroenterology, The Royal Melbourne Hospital, RMH, Victoria 3050, Australia.
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Eindor- Abarbanel A, Naftali T, Ruhimovich N, Bar-Gil Shitrit A, Sklerovsky-Benjaminov F, Konikoff F, Matalon S, Shirin H, Milgrom Y, Ziv-Baran T, Broide E. Important relation between self-efficacy, sense of coherence, illness perceptions, depression and anxiety in patients with inflammatory bowel disease. Frontline Gastroenterol 2020; 12:601-607. [PMID: 34917318 PMCID: PMC8640387 DOI: 10.1136/flgastro-2020-101412] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/13/2020] [Revised: 06/03/2020] [Accepted: 07/19/2020] [Indexed: 02/04/2023] Open
Abstract
INTRODUCTION Anxiety and depression are common disturbances in patients with inflammatory bowel diseases (IBD), and were found to impact the disease course. Illness perceptions (IPs), self-efficacy (SE) and sense of coherence (SOC) are important psychological functions, used by the individual to cope with his chronic disease. AIMS to investigate the association of IP, SE and SOC on anxiety and depression among patients with IBD. PATIENTS AND METHODS Patients filled questionnaires including: demographic, socioeconomic and clinical features. Depression and anxiety were assessed using the Hospital Anxiety and Depression Scale. IP, SE and SOC were assessed using the Brief Illness perception Questionnaire, IBD-SE and SOC scales. RESULTS The study sample consisted of 299 patients with IBD, median age 34.15, 63% females, 70.9% had Crohn's disease, filled the questionnaires. In the multivariate analysis, lower results in IP, SE and SOC were found to be associated with significantly increase anxiety (OR 8.35, p<0.001; OR 4.18, p=0.001; OR 4.67, p<0.001, respectively) and depression (OR 15.8, p=0.001; OR 10.99, p=0.029; OR 6.12, p=0.014. CONCLUSIONS Anxiety and depression are associated with IP, SE and SOC in patients with IBD. Clinicians should be aware of this impact, recognise their patients' psychological abilities to cope with the disease and improve those abilities, when needed, in order to achieve a better coping with the disease and to prevent the development of anxiety and depression.
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Affiliation(s)
- Adi Eindor- Abarbanel
- The Kamila Gonczarowski Institute of Gastroenterology and Liver Diseases, Shamir (Assaf Harofeh) Medical Center affiliated to Sackler School of Medicine Tel Aviv University, Zriffin, Israel
| | - Timna Naftali
- Department of Gastroenterology and Hepatology, Meir Medical Center, affiliated to the Sackler School of Medicine, Tel Aviv University, Kfar Saba, Israel
| | - Nahum Ruhimovich
- Department of Gastroenterology and Hepatology, Meir Medical Center, affiliated to the Sackler School of Medicine, Tel Aviv University, Kfar Saba, Israel
| | | | - Fabiana Sklerovsky-Benjaminov
- Department of Gastroenterology and Hepatology, Meir Medical Center, affiliated to the Sackler School of Medicine, Tel Aviv University, Kfar Saba, Israel
| | - Fred Konikoff
- Department of Gastroenterology and Hepatology, Meir Medical Center, affiliated to the Sackler School of Medicine, Tel Aviv University, Kfar Saba, Israel
| | - Shay Matalon
- The Kamila Gonczarowski Institute of Gastroenterology and Liver Diseases, Shamir (Assaf Harofeh) Medical Center affiliated to Sackler School of Medicine Tel Aviv University, Zriffin, Israel
| | - Haim Shirin
- The Kamila Gonczarowski Institute of Gastroenterology and Liver Diseases, Shamir (Assaf Harofeh) Medical Center affiliated to Sackler School of Medicine Tel Aviv University, Zriffin, Israel
| | - Yael Milgrom
- Digestive diseases institute, Shaare Zedek Medical Center, Jerusalem, Jerusalem, Israel
| | - Tomer Ziv-Baran
- Department of Epidemiology and Preventive Medicine, School of Public, Tel Aviv, Israel
| | - Efrat Broide
- The Kamila Gonczarowski Institute of Gastroenterology and Liver Diseases, Shamir (Assaf Harofeh) Medical Center affiliated to Sackler School of Medicine Tel Aviv University, Zriffin, Israel
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Elran-Barak R, Mozeikov M. One Month into the Reinforcement of Social Distancing due to the COVID-19 Outbreak: Subjective Health, Health Behaviors, and Loneliness among People with Chronic Medical Conditions. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2020; 17:E5403. [PMID: 32727103 PMCID: PMC7432045 DOI: 10.3390/ijerph17155403] [Citation(s) in RCA: 74] [Impact Index Per Article: 14.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 06/09/2020] [Revised: 07/15/2020] [Accepted: 07/24/2020] [Indexed: 12/15/2022]
Abstract
We sought to examine how the near-lockdown measures, announced by the Israeli government in an effort to contain the COVID-19 outbreak, impacted the self-rated health (SRH), health behaviors, and loneliness of people with chronic illnesses. An online cross-sectional survey was carried out about one month (April 20-22, 2020) after the Israeli government reinforced the severe social distancing regulations, among a convenience sample of 315 participants (60% women) with chronic conditions (27% metabolic, 17% cardiovascular, 21% cancer/autoimmune, 18% orthopedic/pain, 12% mental-health). Results suggested that about half of the participants reported a decline in physical or mental SRH, and as many as two-thirds reported feeling lonely. A significant deterioration in health behaviors was reported, including a decrease in vegetable consumption (p = 0.008) and physical activity (p < 0.001), an increase in time spent on social media (p < 0.001), and a perception among about half of the participants that they were eating more than before. Ordinal regression suggested that a decline in general SRH was linked with female gender (p = 0.016), lack of higher education (p = 0.015), crowded housing conditions (p = 0.001), longer illness duration (p = 0.010), and loneliness (p = 0.008). Findings highlight the important role of loneliness in SRH during the COVID-19 lockdown period. Future studies are warranted to clarify the long-term effects of social-distancing and loneliness on people with chronic illnesses.
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Affiliation(s)
- Roni Elran-Barak
- School of Public Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa 3498838, Israel;
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Yu M, Ye Z, Chen Y, Qin T, Kou J, Tian D, Xiao F. Questionnaire assessment helps the self-management of patients with inflammatory bowel disease during the outbreak of Coronavirus Disease 2019. Aging (Albany NY) 2020; 12:12468-12478. [PMID: 32628131 PMCID: PMC7377832 DOI: 10.18632/aging.103525] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/02/2020] [Accepted: 05/30/2020] [Indexed: 02/07/2023]
Abstract
Objective: This study aimed to assess the disease conditions of patients with inflammatory bowel disease (IBD) in Hubei Province during the outbreak of Coronavirus Disease 2019 (COVID-19) by questionnaire online and guide their self-management during this epidemic. Results: A total of 102 eligible questionnaires were included. No patient we surveyed reported a diagnosis of COVID-19. Our result showed that 67.86% of patients with ulcerative colitis (UC) and 80.43% of patients with Crohn's disease (CD) were in remission, 85.29%of patients had a good quality of life. Part of the patients (21.57%) reported their disease conditions worsening. The reduction in physical exercise was a risk factor for worsening conditions (OR=17.593, p=0.009). Some patients reported an alteration of medication regimens during the epidemic. Conclusions: The epidemic of COVID-19 might have a certain impact on many aspects of Hubei IBD patients within four weeks after the traffic control. Doctors could utilize the results from our questionnaire to guide IBD patients’ self-management. Methods: A questionnaire was designed containing the Harvey-Bradshaw Index (HBI), the 6-point Mayo Score, the short inflammatory bowel disease questionnaire (SIBDQ) and distributed to Hubei IBD patients online within four weeks of traffic control after the outbreak, it also included questions about patients’ self-reported disease conditions and their epidemiological features of COVID-19.
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Affiliation(s)
- Meiping Yu
- Department of Gastroenterology, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China
| | - Zhenghao Ye
- Department of Gastroenterology, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China
| | - Yu Chen
- Department of Gastroenterology, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China
| | - Tingting Qin
- Department of Biliary-Pancreatic Surgery, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China
| | - Jiguang Kou
- Department of Gastroenterology, Xiaogan Hospital Affiliated to Wuhan University of Science and Technology, Wuhan, China
| | - De'an Tian
- Department of Gastroenterology, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China
| | - Fang Xiao
- Department of Gastroenterology, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China
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Opheim R, Moum B, Grimstad BT, Jahnsen J, Prytz Berset I, Hovde Ø, Huppertz-Hauss G, Bernklev T, Jelsness-Jørgensen LP. Self-esteem in patients with inflammatory bowel disease. Qual Life Res 2020; 29:1839-1846. [PMID: 32144613 PMCID: PMC7295843 DOI: 10.1007/s11136-020-02467-9] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/28/2020] [Indexed: 01/19/2023]
Abstract
Purpose The purpose of this study was to explore self-esteem and associations between self-esteem and sociodemographic, clinical, and psychological factors in patients with inflammatory bowel disease (IBD), a disease of chronic relapsing inflammation of the gastrointestinal tract. IBD symptoms, including pain, fatigue, and diarrhea, as well as potential life-long medical treatment and surgery, may be demanding, cause significant challenges, and influence self-esteem. Methods In this cross-sectional multicenter study, participants were recruited from nine hospitals in the southeastern and western regions of Norway from March 2013 to April 2014. Data were collected using self-report questionnaires. Self-esteem was assessed by the Rosenberg Self-Esteem Scale, fatigue was assessed by the Fatigue Questionnaire, self-efficacy was assessed by the General Self-Efficacy Scale, and disease activity was assessed by the Simple Clinical Colitis Activity Index for ulcerative colitis (UC) and Harvey Bradshaw Index for Crohn’s disease (CD). Multiple linear regression analysis was applied to examine associations between self-esteem and sociodemographic, clinical, and psychological factors. Results In total, 411 of 452 (91%) patients had evaluable data and were included in this study. The mean scores on self-esteem, self-efficacy, total fatigue, anxiety, and depression were similar between UC patients and CD patients. Male gender, being employed, and higher self-efficacy were independently associated with higher self-esteem, whereas anxiety and depression were independently associated with lower self-esteem. Neither disease activity nor fatigue were associated with self-esteem in the final multiple regression analyses. Conclusion Patient-centered interventions that improve self-esteem and reduce anxiety and depression seem to be important to optimize IBD management.
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Affiliation(s)
- Randi Opheim
- Department of Gastroenterology, Oslo University Hospital, Oslo, Norway. .,Department of Nursing Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway.
| | - Bjørn Moum
- Department of Gastroenterology, Oslo University Hospital, Oslo, Norway.,Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway
| | - Bjørn Tore Grimstad
- Department of Internal Medicine, Stavanger University Hospital, Stavanger, Norway.,Department of Clinical Science, University of Bergen, Bergen, Norway
| | - Jørgen Jahnsen
- Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.,Department of Gastroenterology, Akershus University Hospital, Lørenskog, Norway
| | - Ingrid Prytz Berset
- Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.,Department of Medicine, Aalesund Hospital Trust, Aalesund, Norway
| | - Øistein Hovde
- Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.,Department of Internal Medicine, Innlandet Hospital Trust, Gjøvik, Norway
| | | | - Tomm Bernklev
- Department of Research and Development, Vestfold Hospital Trust, Tønsberg, Norway
| | - Lars-Petter Jelsness-Jørgensen
- Department of Gastroenterology, Østfold Hospital Trust, Grålum, Norway.,Department of Health Sciences, Østfold University College, Fredrikstad, Norway
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Sweeney L, Moss-Morris R, Czuber-Dochan W, Murrells T, Norton C. Developing a better biopsychosocial understanding of pain in inflammatory bowel disease: a cross-sectional study. Eur J Gastroenterol Hepatol 2020; 32:335-344. [PMID: 31851083 DOI: 10.1097/meg.0000000000001615] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Abstract
OBJECTIVE Pain is frequently reported by patients with inflammatory bowel disease (IBD). Pain in IBD is not fully explained by disease activity or other clinical findings, and a recent systematic review suggested that psychosocial factors have an important role in IBD-pain. The aim of this study was to investigate psychosocial factors associated with pain in IBD. METHODS 297 adults (>16 years) with IBD were recruited from outpatient clinics (n = 114) and online (n = 183). Participants completed validated questionnaires assessing pain and potential emotional, cognitive and behavioural correlates. Socio-demographic and clinical factors including disease activity were also recorded. RESULTS 243 (81.8%) of participants reported pain. Of these 243, mean age was 36 years; 153 (63%) had Crohn's disease, 90 (37%) had ulcerative colitis, and 165 (67.9%) were female. 62.6% reported mild, 31.6% moderate and 5.8% severe pain. 40.3% of participants with pain met established criteria for chronic pain and 18.5% reported opioid use. Female gender, smoking, surgery and steroid use were associated with greater pain severity. Psychosocial factors associated with pain-related interference included depression, catastrophising, fear avoidance, lower self-efficacy and worse mental well-being. Regression models explained 45.6% of the variance in pain severity and 49.7% of pain interference. Psychosocial factors explained 9.5% and 24% of this variance respectively when controlling for demographic and clinical variables. CONCLUSIONS Pain in IBD is significantly associated with cognitive and behavioural factors as well as low mood. This study contributes to a biopsychosocial understanding of pain in IBD and identifies important targets for future interventions.
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Affiliation(s)
- Louise Sweeney
- King's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care
| | | | | | - Trevor Murrells
- King's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care
| | - Christine Norton
- King's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care
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Shapiro JM, El-Serag HB, Gandle C, Peacock C, Denson LA, Fishman LN, Hernaez R, Hou JK. Recommendations for Successful Transition of Adolescents With Inflammatory Bowel Diseases to Adult Care. Clin Gastroenterol Hepatol 2020; 18:276-289.e2. [PMID: 31077824 DOI: 10.1016/j.cgh.2019.04.063] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/14/2018] [Revised: 04/22/2019] [Accepted: 04/26/2019] [Indexed: 02/07/2023]
Abstract
Adolescents and young adults diagnosed with inflammatory bowel diseases (IBDs) in pediatric care are vulnerable during their transition to adult care. There are 6 core elements of transition from pediatric to adult IBD care. We identified gaps in this transition and make recommendations for clinical practice and research. There have been few studies of transition policy (core element 1) or studies that tracked and monitored patients through the transition (core element 2). Several studies have assessed transition readiness (core element 3), but instruments for assessment were not validated using important outcomes such as disease control, health care use, adherence, quality of life, or continuity of care. There have been no studies of best practices for transition planning (core element 4), including how to best educate patients and facilitate gradual shifts in responsibility. A small number of longitudinal studies have investigated transfer of care (core element 5), but these were conducted outside of the United States; these studies found mixed results in short- and intermediate-term outcomes after transition completion (core element 6). We discuss what is known about the transition from pediatric to adult care for IBD, make recommendations to improve this process, and identify areas for additional research.
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Affiliation(s)
- Jordan M Shapiro
- Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas.
| | - Hashem B El-Serag
- Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas
| | - Cassandra Gandle
- Department of Medicine, Baylor College of Medicine, Houston, Texas
| | - Cynthia Peacock
- Department of Medicine, Baylor College of Medicine, Houston, Texas
| | - Lee A Denson
- Division of Pediatric Gastroenterology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
| | - Laurie N Fishman
- Division of Pediatric Gastroenterology, Boston Children's Hospital, Boston, Massachusetts
| | - Ruben Hernaez
- Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas
| | - Jason K Hou
- Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas
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Abstract
BACKGROUND Inflammatory bowel disease (IBD) is an incurable autoimmune disease causing overwhelming physical distress and psychological adaptation. PURPOSE To explore the associations between foundational influences and personal characteristics predictors to the achievement of mastery of health in patients with IBD. THEORY Orem's Theory of Self-Care, Resnick's Theory of Self-Efficacy, and Pearlin and Schooler's study of the structure of coping guided this study. The conceptual framework used was the Functional Mastery of Health Ownership (FMHO) model. METHODS A predictive correlational study design using self-administered questionnaires was used. A convenience sample of 151 adults with a diagnosis of IBD for at least 1 year was recruited from the patient population of a gastroenterology medical practice. RESULTS Data were analyzed using multiple regression with standard entry factor loading. Portions of the model were found to be significant and account for 44% of the variance (p < .001; R 2 = .44, Adjusted R 2 = .41). Significant relationships were found among mastery and IBD self-efficacy, perception of mastery, and current health status. Females had higher mastery scores than males. SIGNIFICANCE These findings support the use of a modified FMHO model to predict needs that enable individualized stewardship of health for patients with IBD.
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Chen X, Zhang Y, Xu X, Wang W, Yan H, Li S, Yang N. Mediating Roles of Anxiety, Self-Efficacy, and Sleep Quality on the Relationship Between Patient-Reported Physician Empathy and Inflammatory Markers in Ulcerative Colitis Patients. Med Sci Monit 2019; 25:7889-7897. [PMID: 31634896 PMCID: PMC6820358 DOI: 10.12659/msm.917552] [Citation(s) in RCA: 20] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/14/2019] [Accepted: 07/15/2019] [Indexed: 12/28/2022] Open
Abstract
BACKGROUND Empathy between doctor and patient has an important bearing on patient health. The purpose of this study was to assess whether anxiety, sleep quality, and self-efficacy of patients have mediating effects in the relationship of patient-reported physician empathy and inflammatory factor in ulcerative colitis (UC) patients. MATERIAL AND METHODS This study included 242 patients attended by 45 doctors. Self-reported doctors' empathy ability was measured at patient admission (T1), and patient-reported physician empathy was measured 3 months later (T2). Patient anxiety, general self-efficacy, sleep, and inflammatory factor (IL-6) were measured on T1 and T2. Pearson correlation analysis was used to assess the relationships between self-reported doctor empathy ability and patient indices on T1 and T2. The relationships between anxiety, sleep quality, self-efficacy, IL-6, and patient-reported physician empathy were measured by Pearson correlation analysis and structural equation modeling. RESULTS On T1, no significant correlation was reported between self-reported doctors' empathy ability and indices of the patients (P>0.05). On T2, self-reported doctors' empathy ability was significantly positively correlated with patient sleep and self-efficacy (P<0.01), and significantly negatively correlated with patient anxiety and IL-6 (P<0.01). Moreover, on T2, patient-reported physician empathy was negatively correlated with anxiety and IL-6 and was positively correlated with self-efficacy and sleep quality. The effect of patient-reported physician empathy on IL-6 was mediated by anxiety, sleep quality, and self-efficacy. CONCLUSIONS The anxiety, self-efficacy, and sleep quality of UC patients had mediating effects in the relationship between patient-reported physician empathy and IL-6.
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Affiliation(s)
- Xiangfan Chen
- School of Health Science, Wuhan University, Wuhan, Hubei, P.R. China
| | - Yin Zhang
- Department of Gastroenterology, Huiyang Sanhe Hospital, Huizhou, Guangdong, P.R. China
| | - Xianlin Xu
- Department of Gastroenterology, Huiyang Sanhe Hospital, Huizhou, Guangdong, P.R. China
| | - Wei Wang
- School of Health Science, Wuhan University, Wuhan, Hubei, P.R. China
| | - Hong Yan
- School of Health Science, Wuhan University, Wuhan, Hubei, P.R. China
| | - Shiyue Li
- School of Health Science, Wuhan University, Wuhan, Hubei, P.R. China
| | - Ningxi Yang
- College of Humanities and Social Sciences, Harbin Engineering University, Harbin, Heilongjiang, P.R. China
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Abstract
The growing need for transitional care is quickly becoming apparent in the medical community because children with chronic illnesses are surviving into adulthood. Transitional care is the coordinated movement of young adults with chronic conditions from the pediatric to adult health care setting. This transition period is associated with poorer health outcomes due to differences in pediatric and adult health care models, reluctance to change providers, and transfer of disease ownership. These factors must be considered in inflammatory bowel disease (IBD), in which 25% of patients are diagnosed before adulthood and there is an increasing incidence in the pediatric population. Additionally, those with childhood IBD tend to have more severe disease, making structured transition programs imperative to ensure continuity of care and promote self-advocacy. Recommended models for transition have been based on descriptive data rather than on prospective or randomized studies, but the recent IBD literature supports a need for transitional care. Regardless, a great deal of variability in clinical practice remains because there is no agreed upon optimal transition model. This review addresses the status of transitional care in IBD and provides helpful resources to assess patient readiness for transition and to assist in the care of the young transitioning adult.
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Initial Development and Validation of a Transition Readiness Scale for Adolescents with Inflammatory Bowel Disease. Gastroenterol Res Pract 2019; 2019:5062105. [PMID: 31316560 PMCID: PMC6604282 DOI: 10.1155/2019/5062105] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/13/2018] [Accepted: 06/03/2019] [Indexed: 01/16/2023] Open
Abstract
Background and Aims To date, there are no validated measures in IBD to assess the level of preparedness for transition into adult health care. The purpose of this study was to develop and assess the reliability and validity of a “Transition Readiness” (TR) measure for adolescents with IBD, as well as to evaluate the level of TR synchronicity between adolescents themselves, their parents, and their pediatric gastroenterologists. Methods A self-assessment tool was created to evaluate TR. Items were reviewed for face validation by IBD experts, and an exploratory factor analysis was performed which yielded 3 distinct domains. The study cohort included adolescents aged 12-21 yrs, their parents, and their physicians in pediatric IBD centers. Correlations between patient/parent/physician TR between each of the domains and the overall TR score to age were assessed. Results 63 subjects (average age 16.6 yrs/79% Crohn's disease/44% male) participated in this study. There was a significant correlation between the scoring of adolescents and parents on all three domains. The correlation between adolescents and physicians, as well as between parents and physicians, was only consistent for self-efficacy. Self-efficacy significantly correlated with age, while the correlations between perceived knowledge and perception of medical care with age were not significant. Conclusion Validation of a novel TR measurement for adolescents with IBD demonstrated a good correlation between patients and parents. Out of the three proposed constructs, perceived self-efficacy is the most salient measure.
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