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Vernon-Roberts A, Chan P, Christensen B, Havrlant R, Giles E, Williams AJ. Pediatric to Adult Transition in Inflammatory Bowel Disease: Consensus Guidelines for Australia and New Zealand. Inflamm Bowel Dis 2025; 31:563-578. [PMID: 38701328 PMCID: PMC11808574 DOI: 10.1093/ibd/izae087] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/28/2024] [Indexed: 05/05/2024]
Abstract
BACKGROUND The incidence of pediatric inflammatory bowel disease (IBD) is rising, and there is an increasing need to support adolescents when they transition to adult care. Evidence supports the use of a structured transition process but there is great variation across Australasia. The study aim was to develop evidence and expert opinion-based consensus statements to guide transitional care services in IBD. METHODS A modified UCLA-RAND methodology was employed to develop consensus statements. An IBD expert steering committee was formed and a systematic literature review was conducted to guide the drafting of consensus statements. A multidisciplinary group was formed comprising 16 participants (clinicians, nurses, surgeons, psychologists), who anonymously voted on the appropriateness and necessity of the consensus statements using Likert scales (1 = lowest, 9 = highest) with a median ≥7 required for inclusion. Patient support groups, including direct input from young people with IBD, informed the final recommendations. RESULTS Fourteen consensus statements were devised with key recommendations including use of a structured transition program and transition coordinator, mental health and transition readiness assessment, key adolescent discussion topics, allied health involvement, age for transition, and recommendations for clinical communication and handover, with individualized patient considerations. Each statement reached median ≥8 for appropriateness, and ≥7 for necessity, in the first voting round, and the results were discussed in an online meeting to refine statements. CONCLUSIONS A multidisciplinary group devised consensus statements to optimize pediatric to adult transitional care for adolescents with IBD. These guidelines should support improved and standardized delivery of IBD transitional care within Australasia.
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Affiliation(s)
| | - Patrick Chan
- Department of Gastroenterology, Liverpool Hospital, Sydney, New South Wales, Australia
| | - Britt Christensen
- Department of Gastroenterology, Royal Melbourne Hospital, Melbourne, Victoria, Australia
| | - Rachael Havrlant
- Transition Care Network, Agency for Clinical Innovation, NSW Health, Sydney, New South Wales, Australia
| | - Edward Giles
- Department of Paediatrics, Monash University, Melbourne, Victoria, Australia
- Centre for Innate Immunity and Infectious Disease, Hudson Institute of Medical Research, Melbourne, Victoria, Australia
| | - Astrid-Jane Williams
- Department of Gastroenterology, Liverpool Hospital, Sydney, New South Wales, Australia
- Faculty of Medicine, South Western Sydney Clinical School, University of New South Wales, Sydney, New South Wales, Australia
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Zhou Y, Qiao R, Ding T, Li H, Zhang P. An uncertain future: perspectives of emerging adults with inflammatory bowel disease-a qualitative semistructured interview study in eastern China. BMJ Open 2024; 14:e089213. [PMID: 39557559 PMCID: PMC11574518 DOI: 10.1136/bmjopen-2024-089213] [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: 11/20/2024] Open
Abstract
OBJECTIVE For emerging adults with inflammatory bowel disease, future uncertainty is a critical issue during this pivotal stage of life, study and career development, as they encounter many unknown challenges and opportunities. However, to the best of our knowledge, only a few qualitative studies on how emerging adults with inflammatory bowel disease cope with these uncertainties exist. This study aimed to investigate uncertainties associated with the future of emerging adults with inflammatory bowel disease and explore coping strategies. DESIGN A qualitative semistructured interview study with a phenomenological approach. Face-to-face semistructured interviews were conducted, audio-recorded, transcribed verbatim and subsequently analysed using the Colaizzi seven-step analysis method. SETTING A tertiary hospital in eastern China. PARTICIPANTS Participants (n=14) were emerging adults with inflammatory bowel disease recruited from a tertiary hospital in eastern China, using a purposeful sampling technique. RESULTS Fourteen patients completed the interviews. Four themes were identified: uncertainties in educational and vocational planning, social and interpersonal relationships, mental and emotional health and disease management. Moreover, the participants emphasised the significance of timely patient education postdiagnosis and ensuring consistent medical guidance after discharge to minimise uncertainty and alleviate confusion. They also hoped to manage the disease through traditional Chinese medicine. CONCLUSIONS This study provides valuable insights into the various challenges encountered by emerging adults with inflammatory bowel disease and the factors that may impact their experiences. Additionally, it suggests the need for healthcare providers to devise suitable support and intervention strategies to guide and establish stable management of the patients' uncertain futures. TRIAL REGISTRATION NUMBER ChiCTR2300071289.
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Affiliation(s)
- Yu Zhou
- Department of Nursing, Jiangsu Province Hospital of Chinese Medicine, Affiliated Hospital of Nanjing University of Chinese Medicine, Nanjing, Jiangsu, China
| | - Ranran Qiao
- School of Nursing, Nanjing University of Chinese Medicine, Nanjing, Jiangsu, China
| | - Tengteng Ding
- School of Nursing, Nanjing University of Chinese Medicine, Nanjing, Jiangsu, China
| | - Hui Li
- Department of Nursing, Jiangsu Province Hospital of Chinese Medicine, Affiliated Hospital of Nanjing University of Chinese Medicine, Nanjing, Jiangsu, China
| | - Ping Zhang
- Department of Nursing, Jiangsu Province Hospital of Chinese Medicine, Affiliated Hospital of Nanjing University of Chinese Medicine, Nanjing, Jiangsu, China
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Gao N, Yu Z, Fan Y, Jiang X, Hu T. Impact of negative emotions on upper gastrointestinal diseases: A Mendel randomization study. PLoS One 2024; 19:e0304121. [PMID: 38995968 PMCID: PMC11244763 DOI: 10.1371/journal.pone.0304121] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/08/2023] [Accepted: 05/07/2024] [Indexed: 07/14/2024] Open
Abstract
Mendelian randomization method is a powerful tool in epidemiological research. The core idea is to use genetic variation as a tool to assess the causal relationship between risk factors and specific diseases. Confounding factors are important interference factors for causal inference in epidemiological studies, and genetic variation in Mendelian randomization studies follows the principle of random distribution of alleles to offspring, which is similar to randomized controlled trials. Mendel 's randomization method can effectively avoid the confounding factors, reverse causality in observational studies and the representativeness and feasibility of randomized controlled trials. Previous observational studies have reported a relationship between negative emotions and upper gastrointestinal disease. However, whether this relationship is causal remains unclear. We aimed to evaluate the causal relationship between negative emotions and upper gastrointestinal diseases using two-sample Mendelian randomization (MR). Three sets of genetic instruments from the database were obtained for analysis, including 12 anxiety-related single nucleotide polymorphisms (SNPs), 46 depression-related SNPs, and 58 nervous-related SNPs. SNPs were filtered using the Phenoscanner website, and the inverse variance weighted method, weighted median method, MR-Egger regression, MR pleiotropy residual sum, and outlier test were used for analysis. In inverse variance weighted analysis, anxiety and depression had an effect on gastroduodenal ulcer (p = 2.849×10-3, β = 4.908, 95% CI = 1.684-8.132; and p = 6.457×10-4, β = 1.767, 95% CI = 0.752-2.782, respectively). Additionally, depression had an effect on diseases of the esophagus, stomach, and duodenum (p = 3.498×10-5, β = 0.926, 95% CI = 0.487-1.364). Cochran's Q-derived p-values were 0.457, 0.603, and 0.643, and MR-Egger intercept-derived p-values were 0.697, 0.294, and 0.362, respectively. Here, we show that anxiety and depression have a causal relationship with gastroduodenal ulcers, and depression has a causal relationship with diseases of the esophagus, stomach, and duodenum.
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Affiliation(s)
- Nan Gao
- Changchun University of Chinese Medicine, Changchun, China
| | - Zhun Yu
- Changchun University of Chinese Medicine, Changchun, China
| | - Yu Fan
- Changchun University of Chinese Medicine, Changchun, China
| | - Xue Jiang
- Changchun University of Chinese Medicine, Changchun, China
| | - Ting Hu
- Changchun University of Chinese Medicine, Changchun, China
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Strobel TM, Narayani NA, Nicholson MR, Riera DC, Rakos TG, Fulton NP, Trotter-Busing JA, Horst SN, Dalal RL, Pabla BS, Scoville EA, Schwartz DA, Beaulieu DB. Young Adult Patient and Caregiver Perspectives on Transition Readiness in an Inflammatory Bowel Disease Clinic. CROHN'S & COLITIS 360 2024; 6:otae044. [PMID: 39219801 PMCID: PMC11364789 DOI: 10.1093/crocol/otae044] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/17/2024] [Indexed: 09/04/2024] Open
Abstract
Background When it comes to readiness to transition to an adult subspecialty clinic, perspectives between patients with inflammatory bowel disease (IBD) and their caregivers may differ and influence the ability to successfully transition. Patients with IBD have been shown to suffer from poor transfers of care. There is a need to more efficiently and accurately assess transition readiness to improve the transfer process. Methods Patients transferring to an adult subspecialty clinic and their caregivers were each administered the Transition Readiness Assessment Questionnaire and IBD Self-Efficacy Scale-Adolescent. Differences between patient and caregiver responses and agreement among each dyad were tested. Results There were 29 dyads of patients and caregivers who enrolled. There was no difference between patient and caregiver total scores. The average level of agreement between patients and caregivers was 78%. There was no association between patient response and their age, gender, ethnicity, age at time of transfer, age at diagnosis, or number of emergency room visits in the prior year. Conclusions Patient-reported readiness to transition to adult care was confirmed by their caregivers using validated readiness assessment tools. As transition clinics must focus on high-yield interventions, a readiness survey of young adult patients without a survey of their caregivers may be adequate. However, as experts in each patient's journey, caregivers may be utilized when setting goals and priorities for a transition readiness program. The surveys used in this study can be used broadly to aid subspecialty clinics that are trying to improve the transition process.
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Affiliation(s)
- Thomas M Strobel
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Nikita A Narayani
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Maribeth R Nicholson
- D. Brent Polk Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Diana C Riera
- D. Brent Polk Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Tanner G Rakos
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Nisa P Fulton
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Jordan A Trotter-Busing
- D. Brent Polk Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Sara N Horst
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Robin L Dalal
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Baldeep S Pabla
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Elizabeth A Scoville
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - David A Schwartz
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Dawn B Beaulieu
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
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Gigler ME, Lathan EC, Cardarelli O, Lewis CL, McCabe S, Langhinrichsen-Rohling J. Young adults' expectations for healthcare following institutional betrayal. J Trauma Dissociation 2024; 25:299-314. [PMID: 36073011 DOI: 10.1080/15299732.2022.2120151] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/14/2021] [Accepted: 08/12/2022] [Indexed: 10/14/2022]
Abstract
Healthcare-related institutional betrayal has been used to examine how patients' previous negative healthcare experiences influence their current provider-level trust and future interactions with the healthcare system. However, healthcare-related institutional betrayal has rarely been considered among emerging independent users of the healthcare system: college students. Moreover, it is unknown whether healthcare-related institutional betrayal is associated with future healthcare expectations among this population. Using a trauma-informed framework, this study examined the relations among self-reported experiences of healthcare-related institutional betrayal, trust in healthcare providers, and subsequent expectations for healthcare among college students (n = 967). Analyses considered whether greater past healthcare-related institutional betrayal during one's worst healthcare experience predicts i) lower current trust in healthcare providers and ii) greater negative expectations for future healthcare above and beyond trauma symptoms and the perceived severity of participants' worst healthcare experiences. Sixty-nine percent of participants endorsed having experienced at least one act of institutional betrayal, the most common being the institution not taking proactive steps to prevent unpleasant healthcare experiences (28.5%). As predicted theoretically, greater experiences of institutional betrayal accounted for 16% of the variance in current trust in healthcare providers, even after accounting for trauma symptoms and the severity of the worst healthcare experience. Greater endorsement of institutional betrayal experiences were also significantly associated with negative expectations for future healthcare. Given the youthfulness of the sample, it is noteworthy that 41.4% of participants endorsed at least one negative expectation for future healthcare. Future research should examine how negative expectations are related to healthcare avoidance behaviors.
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Affiliation(s)
- Margaret E Gigler
- Department of Psychological Science, University of North Carolina at Charlotte, Charlotte, North Carolina, USA
- Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, Atlanta, Georgia, USA
| | - Emma C Lathan
- Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, Atlanta, Georgia, USA
| | - Oriana Cardarelli
- Department of Psychology and Neuroscience, University of North Carolina-Chapel Hill, Chapel Hill, North Carolina, USA
| | - Chrystal L Lewis
- College of Nursing, University of South Alabama, Mobile, Alabama, USA
| | - Sean McCabe
- Department of Psychological Science, University of North Carolina at Charlotte, Charlotte, North Carolina, USA
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Lathan EC, Selwyn CN, Gigler ME, Langhinrichsen-Rohling J, Gilmore AK. College Students' Trust, Betrayal, and Needs During and After Their Worst Nonassault-Related Healthcare Experiences Differ Based on Sexual Violence Exposure. VIOLENCE AND VICTIMS 2023; 38:858-878. [PMID: 37989528 DOI: 10.1891/vv-2022-0074] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/23/2023]
Abstract
The BITTEN theoretical framework conceptually links patient's past healthcare betrayal and trauma experiences with their current and future healthcare interactions. BITTEN was used to examine whether healthcare experiences, behaviors, and needs differ between those with and without a history of sexual violence exposure. College students at two public universities in the southeastern United States (n = 1,381; 59.5% White, 61.0% women) completed measures about their self-selected worst or most frightening but nonassault-related healthcare experience. Multivariate general linear and mediation models were used to test theory-derived hypotheses. Participants exposed to sexual violence reported greater healthcare institutional betrayal, lower trust, and greater need for tangible aid and trauma-informed care during their worst nonassault-related healthcare experience. They also reported greater current healthcare avoidance alongside increased utilization of more physical and mental healthcare appointments, even after accounting for gender and race differences. These results suggest that, with minimal information about past sexual violence exposure, healthcare providers could be better poised to predict and address vulnerable patients' healthcare needs.
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Affiliation(s)
- Emma C Lathan
- Department of Psychological Sciences, Auburn University, Auburn, AL, USA
| | - Candice N Selwyn
- Department of Community Mental Health Nursing, University of South Alabama, Mobile, AL, USA
| | - Margaret E Gigler
- Department of Psychological Sciences, University of North Carolina at Charlotte, Charlotte, NC, USA
| | | | - Amanda K Gilmore
- Department of Health Policy and Behavioral Sciences, School of Public Health, Georgia State University, Atlanta, GA, USA
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Stemmer M, Parmet Y, Ravid G. What are IBD Patients Talking About on Twitter? Using Natural Language Understanding to Investigate Patients' Tweets. SN COMPUTER SCIENCE 2023; 4:343. [PMID: 37125220 PMCID: PMC10117261 DOI: 10.1007/s42979-023-01772-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 10/30/2022] [Accepted: 03/03/2023] [Indexed: 05/02/2023]
Abstract
This research aims to investigate what patients with inflammatory bowel disease (IBD) are talking about on Twitter and learn from the experimental knowledge they share online. The study presents a framework for analyzing patients' tweets and comparing their content to tweets of the general population. We started by constructing two datasets of tweets-a dataset of patients' tweets and a control dataset for comparison. Then, we thematically classified the tweets and obtained a subset of tweets related to health and nutrition. We used a Dirichlet regression to compare the thematic segmentations of the two groups. We continued by extracting keywords from the filtered tweets and applying entity sentiment analysis to determine the patients' sentiments towards the extracted keywords. Finally, we detected emotions within the tweets and used a Wilcoxon test to compare the emotions conveyed in each group. We found statistically significant differences between the patients' thematic segmentations and those of the control group and observed significant differences in the emotions each group expressed while talking about health. Not only do patients talk more about health in comparison to the general Twitter population, but they also address the subject with negative sentiments and express more negative emotions. The personal information IBD patients share on Twitter can be used to derive complementary knowledge about the disease and provide an additional foundation to existing medical research on IBD. The four stages of the study are also feasible to extend to other chronic conditions.
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Affiliation(s)
- Maya Stemmer
- Ben-Gurion University of the Negev, P.O.B. 653, 8410501 Beer-Sheva, Israel
| | - Yisrael Parmet
- Ben-Gurion University of the Negev, P.O.B. 653, 8410501 Beer-Sheva, Israel
| | - Gilad Ravid
- Ben-Gurion University of the Negev, P.O.B. 653, 8410501 Beer-Sheva, Israel
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Pollock MD, Brotkin SM, Denio E, Dave S, Fisher EB, Docherty SL, Maslow GR. Clinical Application of a Peer Coaching Intervention to Enhance Self-Management for Adolescents and Young Adults With Inflammatory Bowel Disease. CLINICAL PRACTICE IN PEDIATRIC PSYCHOLOGY 2022; 10:409-427. [PMID: 37701558 PMCID: PMC10497228 DOI: 10.1037/cpp0000468] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 09/14/2023]
Abstract
Objective The purpose of this article is to characterize the current evidence base related to peer support interventions for adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) and to describe a peer support program to enhance self-management for AYAs with IBD through a case study. There is strong theory and compelling evidence suggesting that AYAs with IBD could benefit from and are interested in receiving peer support to enhance self-management; however, literature on peer support interventions for AYAs with IBD is lacking. Methods This study (a) presents a topical review describing qualitative factors AYAs with IBD would seek in a peer support program as well as existing peer support programs for this population, (b) presents an innovative one-to-one peer support program targeting self-management through a case study, and (c) discusses clinical implications and directions for future research. Results Peer support offers a promising approach for AYAs with IBD that is feasible and acceptable to patient populations. However, results from the present topical review identified only two studies that examined peer support interventions for AYAs with IBD. The case study demonstrates how a theoretically driven program uses peer support to promote self-management and adaptive behavioral change. Conclusions The paucity of literature in this area reveals a critical opportunity for future research and clinical programming to improve existing practices by leveraging peer support. We present the application of an innovative mobile-based peer coaching intervention that has the potential to support AYAs with IBD in their self-management.
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Affiliation(s)
- McLean D. Pollock
- Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine
| | | | - Erin Denio
- Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine
| | - Sneha Dave
- Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine
| | - Edwin B. Fisher
- Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina at Chapel Hill
| | | | - Gary R. Maslow
- Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine
- Department of Pediatrics, Duke University School of Medicine
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Stemmer M, Parmet Y, Ravid G. Identifying Patients With Inflammatory Bowel Disease on Twitter and Learning From Their Personal Experience: Retrospective Cohort Study. J Med Internet Res 2022; 24:e29186. [PMID: 35917151 PMCID: PMC9382547 DOI: 10.2196/29186] [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: 03/29/2021] [Revised: 10/29/2021] [Accepted: 05/20/2022] [Indexed: 11/25/2022] Open
Abstract
Background Patients use social media as an alternative information source, where they share information and provide social support. Although large amounts of health-related data are posted on Twitter and other social networking platforms each day, research using social media data to understand chronic conditions and patients’ lifestyles is limited. Objective In this study, we contributed to closing this gap by providing a framework for identifying patients with inflammatory bowel disease (IBD) on Twitter and learning from their personal experiences. We enabled the analysis of patients’ tweets by building a classifier of Twitter users that distinguishes patients from other entities. This study aimed to uncover the potential of using Twitter data to promote the well-being of patients with IBD by relying on the wisdom of the crowd to identify healthy lifestyles. We sought to leverage posts describing patients’ daily activities and their influence on their well-being to characterize lifestyle-related treatments. Methods In the first stage of the study, a machine learning method combining social network analysis and natural language processing was used to automatically classify users as patients or not. We considered 3 types of features: the user’s behavior on Twitter, the content of the user’s tweets, and the social structure of the user’s network. We compared the performances of several classification algorithms within 2 classification approaches. One classified each tweet and deduced the user’s class from their tweet-level classification. The other aggregated tweet-level features to user-level features and classified the users themselves. Different classification algorithms were examined and compared using 4 measures: precision, recall, F1 score, and the area under the receiver operating characteristic curve. In the second stage, a classifier from the first stage was used to collect patients' tweets describing the different lifestyles patients adopt to deal with their disease. Using IBM Watson Service for entity sentiment analysis, we calculated the average sentiment of 420 lifestyle-related words that patients with IBD use when describing their daily routine. Results Both classification approaches showed promising results. Although the precision rates were slightly higher for the tweet-level approach, the recall and area under the receiver operating characteristic curve of the user-level approach were significantly better. Sentiment analysis of tweets written by patients with IBD identified frequently mentioned lifestyles and their influence on patients’ well-being. The findings reinforced what is known about suitable nutrition for IBD as several foods known to cause inflammation were pointed out in negative sentiment, whereas relaxing activities and anti-inflammatory foods surfaced in a positive context. Conclusions This study suggests a pipeline for identifying patients with IBD on Twitter and collecting their tweets to analyze the experimental knowledge they share. These methods can be adapted to other diseases and enhance medical research on chronic conditions.
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Affiliation(s)
- Maya Stemmer
- Department of Industrial Engineering and Management, Ben-Gurion University of the Negev, Beer-Sheva, Israel
| | - Yisrael Parmet
- Department of Industrial Engineering and Management, Ben-Gurion University of the Negev, Beer-Sheva, Israel
| | - Gilad Ravid
- Department of Industrial Engineering and Management, Ben-Gurion University of the Negev, Beer-Sheva, Israel
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Gorbenko KO, Riggs AR, Koeppel B, Phlegar S, Dubinsky MC, Ungaro R, Keefer L. Photovoice as a tool to improve patient-Provider communication in inflammatory bowel disease clinic: A feasibility study. J Eval Clin Pract 2022; 28:159-168. [PMID: 34382292 DOI: 10.1111/jep.13609] [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: 03/16/2021] [Revised: 07/19/2021] [Accepted: 07/26/2021] [Indexed: 11/28/2022]
Abstract
BACKGROUND The emotional health of patients with inflammatory bowel disease (IBD) is critical to self-management, but has been difficult to elucidate in routine care. Patients are often unsure how to communicate their preferences and concerns to their providers in ways that could directly inform shared decision making. Photovoice is an established research methodology used to give vulnerable patients a voice through photographic expression, but has not been previously used in gastroenterology or in IBD. OBJECTIVE To determine the acceptability and feasibility of using Photovoice in an IBD clinic. PATIENT INVOLVEMENT Patients with IBD took photos in response to open-ended prompts, participated in a focus group, and brainstormed ways to share their experience with clinicians. METHODS Enrolled IBD patients received a digital camera, training on basic usage and 10 open-ended prompts related to management of their IBD. Participants completed one-hour in-depth interviews about their photos, which were audio-recorded and professionally transcribed. Three analysts coded transcripts for themes using qualitative analysis software QSR NVivo 11. A subset of patients participated in a focus group about their Photovoice experience. Gastroenterologists were interviewed, using patient photos as prompts, to evaluate feasibility of using Photovoice in the clinic. RESULTS Eleven patients completed the interviews, with five participating in the focus group. Patients shared and discussed a total of 118 photographs. We identified two major themes: disease burden and patient - provider communication. Five IBD physicians reviewed select patient photos and suggested ways to incorporate Photovoice into clinical practice. DISCUSSION Photovoice may be a feasible methodology for patients with IBD and acceptable for providers to use in a clinical setting. PRACTICAL VALUE Photovoice may help providers identify patient concerns and make their communication more patient-centred.
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Affiliation(s)
- Ksenia O Gorbenko
- Mount Sinai Health System, Institute for Health Care Delivery Science, New York, New York, USA.,Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | - Alexa Rae Riggs
- Department of Medicine, Susan and Leonard Feinstein IBD Clinical Center, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | - Brooke Koeppel
- Department of Medicine, Susan and Leonard Feinstein IBD Clinical Center, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | - Sydney Phlegar
- Department of Medicine, Susan and Leonard Feinstein IBD Clinical Center, Icahn School of Medicine at Mount Sinai, New York, New York, USA.,Department of Psychology, University of Michigan, Ann Arbor, Michigan, USA
| | - Marla C Dubinsky
- Department of Medicine, Susan and Leonard Feinstein IBD Clinical Center, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | - Ryan Ungaro
- Department of Medicine, Susan and Leonard Feinstein IBD Clinical Center, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | - Laurie Keefer
- Department of Medicine, Susan and Leonard Feinstein IBD Clinical Center, Icahn School of Medicine at Mount Sinai, New York, New York, USA
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11
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Balbale SN, Schäfer WLA, Davis T, Blake SC, Close S, Perry JE, Zarate RP, Ingram MC, Strople J, Johnson JK, Holl JL, Raval MV. Age- and Sex-Specific Needs for Children Undergoing Inflammatory Bowel Disease Surgery: A Qualitative Study. J Surg Res 2022; 274:46-58. [PMID: 35121549 DOI: 10.1016/j.jss.2021.12.033] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/27/2021] [Revised: 11/10/2021] [Accepted: 12/27/2021] [Indexed: 01/05/2023]
Abstract
INTRODUCTION The use of enhanced recovery protocols (ERP) is extending to pediatric surgical populations, such as patients with inflammatory bowel diseases (IBDs). Given the variation in age- and sex-specific characteristics of pediatric IBD patients, it is important to understand the unique needs of subgroups, such as male versus female or preadolescent versus older patients, when implementing ERPs. We gathered clinician, patient, and caregiver perspectives on age- and sex-specific needs for children undergoing IBD surgery. METHODS We used semistructured interviews and focus groups to assess ERP needs and perceived differences in needs between preadolescent (10-13 y), older (14-19 y), male, and female IBD patients. Participants included clinicians, patients who had recent IBD surgery, and patients' caregivers. RESULTS Forty-eight clinicians, six patients, and eight caregivers participated. Three broad categories of themes emerged: concerns, needs, and experiences related to the (1) surgical care process; (2) continuum of IBD care; and (3) suggestions to make surgical care more patient centered. With regard to surgical care processes, stakeholders reported different communication needs for preadolescent and older children. Key themes about the continuum of IBD care were the need (1) for support from child life specialists and (b) to address young women's health issues. Suggestions to make surgical care more patient centered included providing older children with patient experiences that reflect their perspective as young adults. CONCLUSIONS The findings highlight the need to adopt a patient-centered approach for ERP use that actively addresses age- and sex-specific factors while engaging patients and caregivers as partners with clinicians to improve surgical care for children with IBD.
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Affiliation(s)
- Salva N Balbale
- Division of Gastroenterology and Hepatology, Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois; Center for Health Services and Outcomes Research, Institute of Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois.
| | - Willemijn L A Schäfer
- Surgical Outcomes and Quality Improvement Center (SOQIC), Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, Illinois
| | - Teaniese Davis
- Center for Research and Evaluation, Kaiser Permanente Georgia, Atlanta, Georgia
| | - Sarah C Blake
- Department of Health Policy and Management, Rollins School of Public Health, Emory University, Atlanta, Georgia
| | - Sharron Close
- Department of Pediatric Advanced Practice Nursing, Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia
| | - Joseph E Perry
- Department of Health Policy and Management, Rollins School of Public Health, Emory University, Atlanta, Georgia
| | - Raul Perez Zarate
- Department of Health Policy and Management, Rollins School of Public Health, Emory University, Atlanta, Georgia
| | - Martha-Conley Ingram
- Center for Health Services and Outcomes Research, Institute of Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois; Surgical Outcomes and Quality Improvement Center (SOQIC), Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, Illinois; Division of Pediatric Surgery, Department of Surgery, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois
| | - Jennifer Strople
- Division of Gastroenterology, Hepatology, & Nutrition, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois
| | - Julie K Johnson
- Center for Health Services and Outcomes Research, Institute of Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois; Surgical Outcomes and Quality Improvement Center (SOQIC), Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, Illinois
| | - Jane L Holl
- Department of Neurology, Biological Sciences Division and Center for Healthcare Delivery Science and Innovation, University of Chicago, Chicago, Illinois
| | - Mehul V Raval
- Center for Health Services and Outcomes Research, Institute of Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois; Surgical Outcomes and Quality Improvement Center (SOQIC), Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, Illinois; Division of Pediatric Surgery, Department of Surgery, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois
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Oba J, Sobrado CW, Damião AOMC, Azevedo M, Carlos A, Queiroz N, Len CA, Toma RK, Deboni M, Ozaki MJ, Carrilho FJ, Nahas S, Silva CA. HEALTH-RELATED QUALITY OF LIFE IN ADOLESCENTS AND YOUNG ADULTS WITH INFLAMMATORY BOWEL DISEASE IS ASSOCIATED WITH REDUCTION IN SCHOOL AND WORK PRODUCTIVITY RATHER THAN PHYSICAL IMPAIRMENT: A MULTIDISCIPLINARY STUDY. ARQUIVOS DE GASTROENTEROLOGIA 2021; 58:541-547. [PMID: 34909863 DOI: 10.1590/s0004-2803.202100000-96] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Received: 07/08/2021] [Accepted: 07/13/2021] [Indexed: 01/22/2023]
Abstract
BACKGROUND Inflammatory bowel diseases (IBD), comprising Crohn's disease and ulcerative colitis, are chronic inflammatory diseases of the gastrointestinal tract that often have their onset among adolescents and young adults (AYA). IBD are characterized by episodes of active disease interspersed with periods of remission, and its activity is inversely correlated with health-related quality of life (HRQL). OBJECTIVE This study aimed to determine whether AYA in remission or with low IBD activity would exhibit HRQL similar to that of age-matched healthy individuals, and whether demographic and disease factors could affect HRQL using a 'patient-reported outcome' instrument. METHODS This study enrolled only AYA with IBD, with low activity. This research included five multidisciplinary clinics of two academic hospitals: Paediatric Gastroenterology, Gastroenterology, Coloproctology, Paediatric Rheumatology and Adolescent divisions, São Paulo, Brazil. A total of 59 AYA with IBD (age, 13-25 years) and 60 healthy AYA (age, 13-25 years) completed the Pediatric Quality of Life Inventory 4.0 and 36-Item Short-Form Health Survey questionnaires and the visual analogue scale (VAS) for pain. Demographic data, extra-intestinal manifestations, treatment, and outcomes regarding CD and UC were evaluated. RESULTS AYA with IBD and healthy controls were similar with respect to median ages (18.63 [13.14-25.80] years vs 20.5 [13.68-25.84] years, P=0.598), proportion of female sex (42% vs 38%, P=0.654), and percentage of upper middle/middle Brazilian socioeconomic classes (94% vs 97%, P=0.596). The school/work score was significantly lower in AYA with IBD than in healthy controls (70 [10-100] vs 75 [5-100], P=0.037). The 'general health-perception' score was significantly lower in AYA with IBD than in healthy controls (50 [10-80] vs 0 [25-90], P=0.0002). The median VAS, FACES pain rating scale, and total VAS scores were similar between the two groups (2 [0-10] vs 3 [0-9], P=0.214). No association between HRQL and clinical and demographic parameters was identified among IBD patients. CONCLUSION AYA with low IBD activity reported poor HRQL in school/work and general health perception domains, which highlights a disability criterion in this vulnerable population.
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Affiliation(s)
- Jane Oba
- Faculdade de Medicina da Universidade de São Paulo, Gastroenterologia Pediátrica, São Paulo, SP, Brasil
| | - Carlos W Sobrado
- Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, Disciplina de Coloproctologia, São Paulo, SP, Brasil.,Faculdade de Medicina da Universidade de São Paulo, Divisão de Gastroenterologia e Hepatologia Clínica, São Paulo, SP, Brasil
| | - Aderson O M C Damião
- Faculdade de Medicina da Universidade de São Paulo, Divisão de Gastroenterologia e Hepatologia Clínica, São Paulo, SP, Brasil
| | - Matheus Azevedo
- Faculdade de Medicina da Universidade de São Paulo, Divisão de Gastroenterologia e Hepatologia Clínica, São Paulo, SP, Brasil
| | - Alexandre Carlos
- Faculdade de Medicina da Universidade de São Paulo, Divisão de Gastroenterologia e Hepatologia Clínica, São Paulo, SP, Brasil
| | - Natália Queiroz
- Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, Disciplina de Coloproctologia, São Paulo, SP, Brasil
| | - Claudio A Len
- Universidade Federal de São Paulo, Reumatologia Pediátrica, São Paulo, SP, Brasil
| | - Ricardo K Toma
- Faculdade de Medicina da Universidade de São Paulo, Gastroenterologia Pediátrica, São Paulo, SP, Brasil
| | - Mariana Deboni
- Faculdade de Medicina da Universidade de São Paulo, Gastroenterologia Pediátrica, São Paulo, SP, Brasil
| | - Marcos J Ozaki
- Faculdade de Medicina da Universidade de São Paulo, Gastroenterologia Pediátrica, São Paulo, SP, Brasil
| | - Flair José Carrilho
- Faculdade de Medicina da Universidade de São Paulo, Divisão de Gastroenterologia e Hepatologia Clínica, São Paulo, SP, Brasil
| | - Sergio Nahas
- Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, Disciplina de Coloproctologia, São Paulo, SP, Brasil
| | - Clovis A Silva
- Universidade de São Paulo, Instituto da Criança e do Adolescente, São Paulo, SP, Brasil
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Vernon-Roberts A, Rouse E, Gearry RB, Day AS. Systematic Review of Self-Management Assessment Tools for Children With Inflammatory Bowel Disease. JPGN REPORTS 2021; 2:e075. [PMID: 37205965 PMCID: PMC10191491 DOI: 10.1097/pg9.0000000000000075] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/04/2020] [Accepted: 02/24/2021] [Indexed: 05/21/2023]
Abstract
The relapsing pattern of illness and diverse management strategies for children with inflammatory bowel disease (IBD) may inhibit their opportunities to develop self-management skills. Interventions focused on the development of these skills require population-specific outcome measures. We provide a comprehensive overview of self-management skills assessment tools that are available for children with IBD that target processes and behaviors outlined as beneficial for the development of these skills. Seven health literature databases were searched using terms related to self-management, transition, IBD, Crohn's disease, ulcerative colitis, and children. Identified studies underwent a process of title and then full text review. Included studies underwent data extraction using a priori quality assessment criteria related to self-management skills, health literacy, suitability for the target population, validity and reliability testing. The searches identified 523 papers, 123 of which underwent full-text review and 10 included in the final analysis. The assessment tools identified showed great diversity in their development approach, content, methodological rigor, and health literacy considerations. The most frequently included self-management skills were related to adherence, communication, attending clinic, and disease/treatment knowledge. None of the tools satisfied the criteria of selection for use in the target population. While many chronic diseases of childhood follow a predictable disease course with established treatment pathways, IBD presents a unique set of challenges. The development of self-management skills is vital for successful disease management, but these skills should be assessed by a tool appropriate for the population and their diverse needs.
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Affiliation(s)
| | - Emma Rouse
- Department of Medicine, Otago University, Christchurch, New Zealand
| | | | - Andrew S. Day
- From the Department of Paediatrics, Otago University, Christchurch, New Zealand
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Maddux M, Gordy A, Schurman C, Cole T, Staggs V. Initial Validation of IBD KNOW-IT: Measuring Patient and Caregiver Knowledge of a Child's Disease and Treatment Regimen. J Clin Psychol Med Settings 2021; 27:480-489. [PMID: 31144222 DOI: 10.1007/s10880-019-09636-0] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/20/2022]
Abstract
The present study describes the development and initial validation of a newly developed measure of child and caregiver knowledge of the child's own IBD and treatment, called IBD KNOW-IT. One hundred and fifty-five children and their caregivers completed the IBD KNOW-IT as well as a scale designed to compare each dyad's perceived knowledge to their actual knowledge. Initial psychometric evaluation of IBD KNOW-IT was completed by conducting factor analysis and determining internal consistency, convergent validity, and associations with demographic and medical characteristics. Results supported the validity of a 12-item measure with 4 subscales including Symptoms, Medication Regimen, Disease Monitoring, and Medical Team. Support for the internal consistency of IBD KNOW-IT was obtained. Evidence of validity was demonstrated by significant correlations between child and caregiver scales, and high congruence between perceived and actual knowledge across all subscales. The reliability of the measure was demonstrated by good internal consistency and test-retest reliability. Preliminary psychometric evaluation suggests that IBD KNOW-IT is reliable and valid.
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Affiliation(s)
- Michele Maddux
- Division of Developmental & Behavioral Sciences/Division of Gastroenterology, Children's Mercy-Kansas City, 2401 Gillham Road, Kansas City, MO, 64108, USA.
- Division of Gastroenterology, Children's Mercy-Kansas City, Kansas City, MO, USA.
| | - Allison Gordy
- Division of Gastroenterology, Children's Mercy-Kansas City, Kansas City, MO, USA
| | - Corey Schurman
- Division of Gastroenterology, Children's Mercy-Kansas City, Kansas City, MO, USA
| | - Trevor Cole
- Division of Gastroenterology, Children's Mercy-Kansas City, Kansas City, MO, USA
| | - Vincent Staggs
- Division of Health Services and Outcomes Research, Children's Mercy-Kansas City, Kansas City, MO, USA
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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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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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Szántó KJ, Balázs T, Schrempf DM, Farkas K, Molnár T. Does inflammatory bowel disease have different characteristics according to stage of adolescence? Therap Adv Gastroenterol 2021; 14:1756284820986670. [PMID: 33717208 PMCID: PMC7923967 DOI: 10.1177/1756284820986670] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/05/2020] [Accepted: 12/17/2020] [Indexed: 02/04/2023] Open
Abstract
BACKGROUND There is a lack of data about demographic and treatment characteristics of adolescent patients with inflammatory bowel disease (IBD). The aim of this retrospective, epidemiological study was to evaluate characteristics and therapeutic features of Hungarian adolescents with IBD. METHODS We analysed the social security databases of the National Health Insurance Fund. Adolescent patients with IBD for whom data from 2009 to 2016 were observable in the database were enrolled. Patients aged 14 to 17 years and 18 to 21 years were defined as middle and late adolescent patients. RESULTS The incidences of IBD were 20.12 per 100,000 middle adolescent patients and 29.72 per 100,000 late adolescent patients. Admission to gastroenterology department was higher in both groups compared with admissions to surgery department. Mesalazine was used by a high proportion of Crohn's disease and ulcerative colitis patients. Rates of corticosteroid use were similar in both groups, with a tendency to decrease over time. The need for biologic agents was higher in the middle adolescent patients. The proportion of patients in the middle adolescent group who received anti-TNF therapy showed an increasing tendency. CONCLUSION Our data suggest differences in the treatment strategies of gastroenterologists for these age groups. The greater need of anti-TNF therapy among the middle adolescent group indicates that adolescent patients before the transition to adult care may have a more severe disease phenotype. We expect that a strategy of early, effective treatment will significantly ameliorate the subsequent disease course, which is manifested in adult care.
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Shearer JL, Perry S, Lidyard N, Apperson-Hensen C, DeLozier S, Burkhart K, Katz J, Moses J. Evaluating a Standardized Transition of Care Process for Pediatric Inflammatory Bowel Disease Patients. CHILDREN-BASEL 2020; 7:children7120271. [PMID: 33291611 PMCID: PMC7761915 DOI: 10.3390/children7120271] [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: 10/23/2020] [Revised: 11/26/2020] [Accepted: 12/01/2020] [Indexed: 11/16/2022]
Abstract
To reduce lapses in care for pediatric inflammatory bowel disease (IBD) patients approaching adulthood, a health maintenance transition visit (HMV) was developed to supplement standard medical care (SMV). Our aim was to assess the effect of the HMV on transition readiness. A retrospective chart review was conducted at a single center with demographics and clinical data from HMV and SMV visits. Effectiveness of the HMV was assessed by the patient health questionanaire-9 (PHQ-9) and transition readiness assessment questionnaire (TRAQ) scores. A total of 140 patients, 80% Caucasian and 59% male completed an HMV. The mean age was 18 ± 2 years old, and 93% of patients reported inactive or mild disease. Patients who completed at least 1 prior HMV scored significantly higher on the TRAQ when transferring to adult care compared to patients transferred at their first HMV visit (92 vs. 83, p < 0.05). Of patients with no prior depression diagnosis, 36% had a positive screen for depression. A significant relationship was identified between disease status and PHQ-9 (p < 0.05). This study demonstrated a structured HMV increased transition readiness and quantified the significant under-diagnosis of depression in this population, emphasizing the importance of screening. These results indicate depression may affect patients' transition preparedness.
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Affiliation(s)
- Jennifer Lynne Shearer
- School of Medicine, Case Western Reserve University, Cleveland, OH 44106, USA; (J.L.S.); (C.A.-H.)
| | - Sharon Perry
- UH/Rainbow Babies Children’s Pediatric Gastroenterology, University Hospitals Cleveland, Cleveland, OH 44106, USA; (S.P.); (N.L.)
| | - Nicole Lidyard
- UH/Rainbow Babies Children’s Pediatric Gastroenterology, University Hospitals Cleveland, Cleveland, OH 44106, USA; (S.P.); (N.L.)
| | - Carolyn Apperson-Hensen
- School of Medicine, Case Western Reserve University, Cleveland, OH 44106, USA; (J.L.S.); (C.A.-H.)
| | - Sarah DeLozier
- Center for Clinical Research, University Hospitals Cleveland, Cleveland, OH 44106, USA;
| | - Kimberly Burkhart
- UH/Rainbow Babies and Children’s Pediatric Psychology, University Hospitals Cleveland, Cleveland, OH 44106, USA;
| | - Jeffry Katz
- Division of Gastroenterology, University Hospitals Cleveland Medical Center, Cleveland, OH 44106, USA;
| | - Jonathan Moses
- School of Medicine, Case Western Reserve University, Cleveland, OH 44106, USA; (J.L.S.); (C.A.-H.)
- UH/Rainbow Babies Children’s Pediatric Gastroenterology, University Hospitals Cleveland, Cleveland, OH 44106, USA; (S.P.); (N.L.)
- Correspondence: ; Tel.: +1-216-844-1765
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Factors Influencing Received Social Support Among Emerging Adults With Inflammatory Bowel Disease: A Cross-Sectional Study. Gastroenterol Nurs 2020; 43:429-439. [PMID: 33055542 DOI: 10.1097/sga.0000000000000483] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022] Open
Abstract
The majority of research among individuals with inflammatory bowel disease (IBD) focuses on perceived social support. A gap exists regarding the role of received social support in self-management enhancement. The purpose of this study was to examine specific contextual factors (individual, condition-specific, and emerging adulthood factors) that influence received social support (total, informational, emotional, and tangible) among emerging adults (ages 18-29 years) with IBD. A convenience sample of 61 emerging adults with a diagnosis of IBD was obtained. An association was found between high total received social support and several individual factors such as being closer to the younger end of the age range (ages 18-29 years), married, and fully employed. When controlling for time since diagnosis and symptom interference, high tangible received social support was associated with the use of immunomodulator and biological medications. Emerging adulthood factors were not associated with total or any types of received social support. Future research could examine differences between types of social support and self-management behaviors. These findings contribute a new direction for intervention development with a focus on individual and condition-specific factors to enhance received social support and ultimately health outcomes for individuals with IBD.
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Vivier H, Ross EJ, Cassisi JE. Classification of gastrointestinal symptom patterns in young adults. BMC Gastroenterol 2020; 20:326. [PMID: 33023502 PMCID: PMC7542131 DOI: 10.1186/s12876-020-01478-7] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/31/2020] [Accepted: 09/29/2020] [Indexed: 12/31/2022] Open
Abstract
BACKGROUND The purpose of this study was to identify common gastrointestinal (GI) symptom groups using the Patient-Reported Outcomes Measurement Information System - GI symptom scales (PROMIS-GI) within a large sample of young adults. An attempt was made to relate the emergent groups to the Rome IV disorders of gut-brain interaction symptom domains. The PROMIS-GI is a freely available, adaptable, normatively referenced symptom measurement system that is applicable to many health assessment situations. METHODS Participants were 956 introductory psychology students between the ages of 18 and 25 who completed the PROMIS-GI as part of ongoing research monitoring physical and psychological health of students at a major southeastern university. GI symptom groups were determined using a latent class analysis (LCA) approach. These GI symptom groups were then compared on key psychosocial factors including self-reported mood, anxiety, and health related quality of life (HRQoL) using MANOVA. RESULTS Three groups were identified based on GI symptom elevations: Normal (n = 649), Mild (n = 257), and Moderate (n = 50). Self-reported anxiety, depression, and bodily pain levels were significantly higher in the Mild and Moderate GI symptom groups, and they indicated significantly lower work functioning, and general health ratings compared to participants in the normal group. CONCLUSIONS Approximately a third of young adults surveyed were experiencing at least one GI symptom of a severity greater than normative levels. Both the Mild and Moderate GI groups demonstrated a similar configuration of symptoms with significantly the higher levels of pain, gas/bloating, and nausea/vomiting compared to the Normal group. The configuration of symptoms did not map discretely onto the Rome IV diagnostic categories for Bowel Disorders, such as IBS with predominant Diarrhea or Functional Constipation as might be expected. Rather, the emergent groups suggest that Bowel Disorders occur on a continuum of severity across multiple symptom areas. Mild to moderate GI symptoms appear to emerge at much earlier ages and are more frequent than previously documented. It is recommended that health service providers evaluate individual patterns of "GI health" when young adults present with anxiety and depression, and conversely, they should assess anxiety and depression when they present with GI complaints.
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Affiliation(s)
- Helize Vivier
- Department of Psychology, University of Central Florida, 4111 Pictor Lane, Building 99, Suite 320, Orlando, FL, 32816, USA
| | - Emily J Ross
- Department of Psychology, University of Central Florida, 4111 Pictor Lane, Building 99, Suite 320, Orlando, FL, 32816, USA
| | - Jeffrey E Cassisi
- Department of Psychology, University of Central Florida, 4111 Pictor Lane, Building 99, Suite 320, Orlando, FL, 32816, USA.
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Ross EJ, Vivier H, Cassisi JE, Dvorak RD. Gastrointestinal health: An investigation of mediating effects on mood and quality of life. Health Psychol Open 2020; 7:2055102920974524. [PMID: 34104459 PMCID: PMC8162204 DOI: 10.1177/2055102920974524] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/31/2022] Open
Abstract
High prevalence rates for depression, anxiety, and gastrointestinal (GI) symptoms are found in emerging adults. However, the consequences of mood, anxiety, and GI health on health-related quality of life (HRQOL) are not well established. The biopsychosocial model and the gut-brain axis (GBA) explains the interactions of these psychological phenomenon on social and biological functioning. Following this theoretical framework, it was hypothesized that pathways between depression, anxiety, and HRQOL would be mediated by GI health. Data was cross-sectional. Undergraduates in psychology courses (N = 956) were recruited for course credit as part of ongoing research monitoring physical and psychological health of students at a major southeastern university. Participants were between 18 and 25 years old and measures were administered online. Pathways between depression, anxiety, and HRQOL were investigated using SEM analysis. The SEM was tested and specified for mediating effects. A well-fitting latent variable of GI health was created from the PROMIS-GI® scales, advancing its utility. The mediation model demonstrated anxiety and depression have significant consequences for HRQOL in emerging adults. Direct pathways from GAD7 and PHQ9 scores were found between Physical and Mental HRQOL. Notably, the path from anxiety to Physical HRQOL was fully mediated by GI health. The direct path from depressive symptoms to Physical and Mental HRQOL was partially mediated by GI health, and anxiety to Mental HRQOL was partially mediated by GI health. Findings were consistent with the biopsychosocial model and GBA. The mediation model tested here has treatment and conceptual implications. Individuals presenting with anxiety or depression should be assessed for GI symptoms and conversely, those presenting with GI complaints should be evaluated for anxiety and depression. Research is needed to develop a scoring approach to combine the PROMIS-GI® scales, so the latent construct of GI health may be used in related applications.
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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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van den Brink G, van Gaalen MAC, de Ridder L, van der Woude CJ, Escher JC. Health Care Transition Outcomes in Inflammatory Bowel Disease: A Multinational Delphi Study. J Crohns Colitis 2019; 13:1163-1172. [PMID: 30766997 PMCID: PMC7142327 DOI: 10.1093/ecco-jcc/jjz044] [Citation(s) in RCA: 30] [Impact Index Per Article: 5.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/23/2022]
Abstract
BACKGROUND Transition programmes are designed to prepare adolescent inflammatory bowel disease [IBD] patients for transfer to adult care. It is still unclear which outcome parameters define 'successful transition'. Therefore, this study aimed to identify outcomes important for success of transition in IBD. METHODS A multinational Delphi study in patients, IBD nurses, and paediatric and adult gastroenterologists was conducted. In stage 1, panellists commented on an outcome list. In stage 2, the refined list was graded from 1 to 9 [least to very important], by an expert and a patient panel. In stage 3, the expert panel ranked important outcomes from 1 to 10 [least to most important]. Descriptive statistics and Mann-Whitney U-tests were performed. RESULTS The final item list developed in stage 1 was tested by the expert [n = 74 participants, 52.7% paediatric] and patient panel [n = 61, aged 16-25 years, 49.2% male]. Respectively, ten and 11 items were found to be important by the expert and patient panel. Both panels agreed on eight of these items, of which six reflected self-management skills. In stage 3, the expert panel formed a top-ten list. The three most important items were: decision-making regarding IBD [mean score 6.7], independent communication [mean score 6.3] and patient satisfaction [mean score 5.8]. CONCLUSION This is the first study identifying outcomes that IBD healthcare providers and patients deem important factors for successful transition. Self-management skills were considered more important than IBD-specific items. This is a first step to further define success of transition in IBD and subsequently evaluate the efficacy of different transition models.
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Affiliation(s)
- Gertrude van den Brink
- Department of Paediatric Gastroenterology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands
| | - Martha A C van Gaalen
- Department of Paediatric Gastroenterology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands
| | - Lissy de Ridder
- Department of Paediatric Gastroenterology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands
| | | | - Johanna C Escher
- Department of Paediatric Gastroenterology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands,Corresponding author: Professor J. C. Escher, MD, PhD, Department of Paediatric Gastroenterology, Erasmus MC-Sophia, Wytemaweg 80, 3015 CN Rotterdam, The Netherlands. Tel: +31-10-7036076;
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Schütz L, Radke M, Menzel S, Däbritz J. Long-term implications of structured transition of adolescents with inflammatory bowel disease into adult health care: a retrospective study. BMC Gastroenterol 2019; 19:128. [PMID: 31324228 PMCID: PMC6642593 DOI: 10.1186/s12876-019-1046-5] [Citation(s) in RCA: 24] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/10/2019] [Accepted: 07/15/2019] [Indexed: 12/16/2022] Open
Abstract
Background We aimed to evaluate the long-term clinical and socioeconomic outcome of structured transition care in adolescents with inflammatory bowel disease (IBD). Methods We compared the clinical long-term course of 24 patients with and 11 patients without structured transition care within 24 months before and 24 months after transfer from paediatric to adult health care. Socio-economic parameters and quality of life were assessed by IBD Questionnaire (IBDQ-32) and additional items. Treatment costs were calculated for medication, surgery and hospitalisation. Results The percentage of transfer group patients with an IBD-related intestinal complication was higher compared to the transition group (64% vs. 21%, p = 0.022). We also found a tendency towards a higher number of IBD-related surgery in the transfer group compared to the transition group (46% vs. 13%, p = 0.077). Transfer group patients received higher mean cumulated doses of radiation compared with the transition group (4.2 ± 5.3 mSv vs. 0.01 ± 0.01 mSv, p = 0.036). Delayed puberty was only noted in the transfer group (27%, p = 0.025). Mean expenditures for surgeries and hospitalisation tended to be lower in the transition group compared to transfer group patients (744 ± 630€ vs. 2,691 ± 4,150€, p = 0.050). Sexual life satisfaction was significantly higher (p = 0.023) and rates of loose bowel movements tended to be lower (p = 0.053) in the transition group. Conclusions Structured transition of adolescents with IBD from paediatric into adult health care can lead to important clinical and economic benefits. Electronic supplementary material The online version of this article (10.1186/s12876-019-1046-5) contains supplementary material, which is available to authorized users.
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Affiliation(s)
- Lukas Schütz
- Department of Paediatrics, University Hospital Rostock, Ernst-Heydemann-Str. 8, D-18057, Rostock, Germany
| | - Michael Radke
- Department of Paediatrics, University Hospital Rostock, Ernst-Heydemann-Str. 8, D-18057, Rostock, Germany.,Department of Paediatrics, Klinikum Westbrandenburg, Potsdam, Germany
| | - Stephan Menzel
- Ernst-von-Bergmann Outpatient Clinic, Gastroenterology & Hepatology, Potsdam, Germany
| | - Jan Däbritz
- Department of Paediatrics, University Hospital Rostock, Ernst-Heydemann-Str. 8, D-18057, Rostock, Germany.
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Kamp KJ, West P, Holmstrom A, Luo Z, Wyatt G, Given B. Systematic Review of Social Support on Psychological Symptoms and Self-Management Behaviors Among Adults With Inflammatory Bowel Disease. J Nurs Scholarsh 2019; 51:380-389. [PMID: 31119856 DOI: 10.1111/jnu.12487] [Citation(s) in RCA: 19] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/09/2019] [Indexed: 12/14/2022]
Abstract
PURPOSE The purpose was to determine the relationship between social support, psychological symptoms and self-management behaviors among adults with inflammatory bowel disease (IBD) and examine the influence of types of social support and patient age. DESIGN This was a systematic review. PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Communication and Mass Media Complete, and Communication Abstracts were searched. Publication dates were limited to January 2000 to August 2018. METHODS The systematic review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement, and quality was appraised based on the Critical Appraisal Skills Programme for cohort studies tool. The data were synthesized using narrative synthesis techniques. FINDINGS The literature review yielded 458 results. Eight articles met inclusion criteria. Articles utilized a variety of conceptualizations of both social support and self-management behaviors, making comparisons difficult. Findings demonstrated an inverse relationship between social support and psychological symptoms, and in one study only when social support buffered high stress. Studies with significant relationships between age and self-management behaviors indicated that a lower age was associated with decreased self-management behaviors. CONCLUSIONS Social support has the potential to influence psychological symptoms among patients with IBD. Future research should examine types of social support (i.e., emotional, informational, and tangible support) and measure levels of received social support. CLINICAL RELEVANCE Social support may serve as a modifiable factor to improve psychological symptoms among adults with IBD. Younger adults (age <40 years) may benefit from specialized interventions to address self-management behaviors.
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Affiliation(s)
- Kendra J Kamp
- Psi , Postdoctoral Fellow, University of Washington, Department of Biobehavioral Nursing and Health Informatics, Seattle, WA,, USA
| | - Patricia West
- Alpha Psi , PhD Student, Michigan State University, East Lansing, MI, USA
| | - Amanda Holmstrom
- Associate Professor, Michigan State University, East Lansing, MI, USA
| | - Zhehui Luo
- Associate Professor, Michigan State University, East Lansing, MI, USA
| | - Gwen Wyatt
- Alpha Psi , Professor, Michigan State University, East Lansing, MI, USA
| | - Barbara Given
- Alpha Psi , Professor, Interim Associate Dean for Research, East Lansing, MI, USA
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Challenges and obstacles in the transition process through the eyes of the gastroenterologist. Eur J Gastroenterol Hepatol 2019; 31:486-493. [PMID: 30688664 DOI: 10.1097/meg.0000000000001359] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/10/2022]
Abstract
BACKGROUND Adult and pediatric care have different views and ways of handling the patients and the parents, which may result in insufficient coordination and communication of transfer. The young patient, the parents, the pediatric, and the adult provider constitute four central actors in transition and transfer, and they have different roles, approaches, and needs. Our aim was to clarify the challenges and background for each actor. MATERIALS AND METHODS Statements from semistructured interviews of adult gastroenterologists and nurses were analyzed and interpreted by social scientific principles. The interviews were conducted individually, and each interview was completed within 30 min. The interviews were taped, transcribed, and sent to the interviewees for approval. RESULTS The analysis of the statements included a description of the motives, perspectives, and approaches of the interviewees as well as an exploration and interpretation of the underlying meaning, patterns, and models. The main points of the article are illustrated through excerpts from the interviews and concluded in the recommendations. CONCLUSION (I) Pediatricians and adult gastroenterologist need to rethink their view on patients aged 15-20 years and understand that they are different from other patients and do have different demands. (II) Transfer should be considered a three-part process: (a) transition at the pediatric department, (b) a coordinated transfer, and (c) a consolidation phase after transfer. (III) Adolescent patients need proper education and empowerment during transition. (IV) Parents need to be timely prepared including an adjustment and redefinition of their roles.
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van den Brink G, van Gaalen MA, Zijlstra M, de Ridder L, van der Woude CJ, Escher JC. Self-efficacy did not predict the outcome of the transition to adult care in adolescents with inflammatory bowel disease. Acta Paediatr 2019; 108:333-338. [PMID: 29926962 PMCID: PMC6585705 DOI: 10.1111/apa.14471] [Citation(s) in RCA: 18] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/08/2017] [Revised: 04/22/2018] [Accepted: 06/19/2018] [Indexed: 01/08/2023]
Abstract
AIM It can be difficult for adolescents with inflammatory bowel disease (IBD) to make the transition from paediatric to adult care. We studied the outcomes of this process and defined what constituted a successful transition. METHODS In 2008, 50 adolescents who attended our IBD transition clinic completed IBD-yourself, a self-efficacy questionnaire that we had previously developed and validated. We approached the subjects in 2014, two to six years after they transferred to adult care, and 35 agreed to take part in the current study. The outcome of transition was assessed by our newly developed Transition Yourself Score. In addition, the relationship between self-efficacy and the outcome of the transition was measured. RESULTS The mean age of the patients was 21.8 years, and 69% suffered from Crohn's disease. The transition process was successful in 63% of cases, moderately successful in 31% and failed in 6%. A successful transition was associated with effective use of medication and clinical remission at the time of transfer, but could not be predicted by self-efficacy. The Transition Yourself Score will be validated in future studies. CONCLUSION Nearly two-thirds (63%) of the adolescents who attended the IBD transition clinic had a successful transition to adult care.
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Affiliation(s)
- Gertrude van den Brink
- Department of Paediatric Gastroenterology; Erasmus MC-Sophia Children's Hospital; Rotterdam The Netherlands
| | - Martha A.C. van Gaalen
- Department of Paediatric Gastroenterology; Erasmus MC-Sophia Children's Hospital; Rotterdam The Netherlands
| | - Marieke Zijlstra
- Department of Paediatric Gastroenterology; Wilhelmina Children's Hospital; University Medical Center Utrecht; Utrecht The Netherlands
| | - Lissy de Ridder
- Department of Paediatric Gastroenterology; Erasmus MC-Sophia Children's Hospital; Rotterdam The Netherlands
| | | | - Johanna C. Escher
- Department of Paediatric Gastroenterology; Erasmus MC-Sophia Children's Hospital; Rotterdam The Netherlands
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Rohatinsky N, Risling T, Kumaran M, Hellsten LAM, Thorp-Froslie N. Healthcare Transition in Pediatrics and Young Adults With Inflammatory Bowel Disease: A Scoping Review. Gastroenterol Nurs 2018; 41:145-158. [PMID: 29596129 DOI: 10.1097/sga.0000000000000345] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/27/2022] Open
Abstract
The incidence of inflammatory bowel disease has steadily increased in children within the last decade. As young adults transition into the adult healthcare system, lack of support can lead to disease exacerbations and disease-related complications. The purpose of this scoping review was to examine the current healthcare transition literature in pediatrics and young adults with inflammatory bowel disease, with a particular focus on assessment or screening tools to evaluate healthcare transition readiness. Five most relevant databases were searched. Of these, 22 articles met the inclusion criteria and key findings from these are summarized. The majority of articles focused on adolescents or young adults with inflammatory bowel disease and were primarily published in the United States. Since 2008, there has been a growing trend in publications of inflammatory bowel disease healthcare transition literature. Articles were often described as healthcare transition readiness assessment tools, patient outcomes following transition, or transition experiences and barriers. An understanding of the current literature on the readiness assessment and support strategies is required to promote an improved quality of life for pediatric and young adult patients living with inflammatory bowel disease.
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Affiliation(s)
- Noelle Rohatinsky
- Noelle Rohatinsky, PhD, RN, CMSN(C), is Assistant Professor, College of Nursing, University of Saskatchewan, Saskatoon, Canada. Tracie Risling, PhD, RN, is Assistant Professor, College of Nursing, University of Saskatchewan, Saskatoon, Canada. Maha Kumaran, MA, MLIS, is Librarian, Leslie & Irene Dubé Health Sciences Library, University of Saskatchewan, Saskatoon, Canada. Laurie-ann M. Hellsten, PhD, is Professor, Department of Educational Psychology and Special Education, College of Education, University of Saskatchewan, Saskatoon, Canada. Nancy Thorp-Froslie, MPH, is Registered Nursing Student, College of Nursing, University of Saskatchewan, Saskatoon, Canada
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30
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van Rheenen PF, Aloi M, Biron IA, Carlsen K, Cooney R, Cucchiara S, Cullen G, Escher JC, Kierkus J, Lindsay JO, Roma E, Russell RK, Sieczkowska-Golub J, Harbord M. European Crohn's and Colitis Organisation Topical Review on Transitional Care in Inflammatory Bowel Disease. J Crohns Colitis 2017; 11:1032-1038. [PMID: 28158494 DOI: 10.1093/ecco-jcc/jjx010] [Citation(s) in RCA: 74] [Impact Index Per Article: 9.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/23/2017] [Accepted: 01/24/2017] [Indexed: 12/12/2022]
Abstract
BACKGROUND This European Crohn's and Colitis Organisation [ECCO] topical review focuses on the transition of adolescents with inflammatory bowel disease [IBD] from child-centred to adult-oriented care. The aim was to provide evidence-supported, expert consensus for health professionals taking part in the transition. METHODS An online survey determined the areas of importance for health professionals involved in the transition of adolescents with IBD. Thereafter an expert panel of nine paediatric and five adult gastroenterologists was formed to identify the critical elements of the transition programme, and to prepare core messages defined as 'current practice points'. There is limited literature about transition, therefore this review is mainly based on expert opinion and consensus, rather than on specific evidence. RESULTS A total of 21 practice points were generated before the first [online] voting round. Practice points that reached >80% agreement were accepted, while those that did not reach 80% agreement were refined during a consensus meeting and subjected to voting. Ultimately, 14 practice points were retained by this review. CONCLUSION We present a consensus-based framework for transitional care in IBD that provides a guidance for clinical practice.
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Affiliation(s)
- Patrick F van Rheenen
- Department of Paediatric Gastroenterology, University of Groningen, University Medical Centre Groningen,Groningen, The Netherlands
| | - Marina Aloi
- Paediatric Gastroenterology and Liver Unit, Sapienza University of Rome, University Hospital Umberto I, Rome, Italy
| | - Irit Avni Biron
- Department of Gastroenterology, Rabin Medical Center - Beilinson Hospital, Petah Tikva, Israel
| | - Katrine Carlsen
- Department of Paediatrics, Hvidovre University Hospital, Hvidovre, Denmark
| | - Rachel Cooney
- Department of Gastroenterology, Queen Elizabeth Hospital,Birmingham, UK
| | - Salvatore Cucchiara
- Paediatric Gastroenterology and Liver Unit, Sapienza University of Rome, University Hospital Umberto I, Rome, Italy
| | - Garret Cullen
- Department of Gastroenterology, Centre for Colorectal Disease, St Vincent's University Hospital, Dublin, Ireland
| | - Johanna C Escher
- Department of Paediatric Gastroenterology, Erasmus University Medical Centre, Sophia Children's Hospital, Rotterdam, The Netherlands
| | - Jaroslaw Kierkus
- Department of Gastroenterology, Hepatology, Feeding Disorders and Paediatrics, Children's Memorial Health Institute, Warsaw, Poland
| | - James O Lindsay
- Department of Gastroenterology, Barts Health NHS Trust, The Royal London Hospital, London, UK
| | - Eleftheria Roma
- First Department of Paediatrics, Gastroenterology Unit, University of Athens, Athens, Greece
| | - Richard K Russell
- Department of Paediatric Gastroenterology, The Royal Hospital for Children, Glasgow, UK
| | - Joanna Sieczkowska-Golub
- Department of Gastroenterology, Hepatology, Feeding Disorders and Paediatrics, Children's Memorial Health Institute, Warsaw, Poland
| | - Marcus Harbord
- Imperial College, London; and Chelsea and Westminster Hospital, London, UK
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Gerfaud A, Bridoux-Henno L, Bretagne JF, Siproudhis L, Bouguen G, Dabadie A. Évaluation de la transition pédiatrie-gastroentérologie d’adultes des enfants atteints de maladie inflammatoire cryptogénique intestinale. Arch Pediatr 2017; 24:534-541. [DOI: 10.1016/j.arcped.2017.03.008] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/28/2016] [Revised: 01/26/2017] [Accepted: 03/10/2017] [Indexed: 01/28/2023]
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Afzali A, Wahbeh G. Transition of pediatric to adult care in inflammatory bowel disease: Is it as easy as 1, 2, 3? World J Gastroenterol 2017; 23:3624-3631. [PMID: 28611515 PMCID: PMC5449419 DOI: 10.3748/wjg.v23.i20.3624] [Citation(s) in RCA: 30] [Impact Index Per Article: 3.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/24/2017] [Revised: 04/12/2017] [Accepted: 05/04/2017] [Indexed: 02/06/2023] Open
Abstract
Inflammatory bowel disease (IBD) is a heterogeneous group of chronic diseases with a rising prevalence in the pediatric population, and up to 25% of IBD patients are diagnosed before 18 years of age. Adolescents with IBD tend to have more severe and extensive disease and eventually require graduation from pediatric care toadult services. The transition of patients from pediatric to adult gastroenterologists requires careful preparation and coordination, with involvement of all key players to ensure proper collaboration of care and avoid interruption in care. This can be challenging and associated with gaps in delivery of care. The pediatric and adult health paradigms have inherent differences between health care models, as well as health care priorities in IBD. The readiness of the young adult also influences this transition of care, with often times other overlaps in life events, such as school, financial independence and moving away from home. These patients are therefore at higher risk for poorer clinical disease outcomes. The aim of this paper is to review concepts pertinent to transition of care of young adults with IBD to adult care, and provides resources appropriate for an IBD pediatric to adult transition of care model.
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Stollon N, Zhong Y, Ferris M, Bhansali S, Pitts B, Rak E, Kelly M, Kim S, van Tilburg MAL. Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease. World J Gastroenterol 2017; 23:3349-3355. [PMID: 28566896 PMCID: PMC5434442 DOI: 10.3748/wjg.v23.i18.3349] [Citation(s) in RCA: 41] [Impact Index Per Article: 5.1] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/13/2016] [Revised: 02/04/2017] [Accepted: 04/12/2017] [Indexed: 02/06/2023] Open
Abstract
AIM To describe the longitudinal course of acquisition of healthcare transition skills among adolescents and young adults with inflammatory bowel diseases.
METHODS We recruited adolescents and young adults (AYA) with inflammatory bowel diseases (IBD), from the pediatric IBD clinic at the University of North Carolina. Participants completed the TRxANSITION Scale™ at least once during the study period (2006-2015). We used the electronic medical record to extract participants’ clinical and demographic data. We used ordinary least square regressions with robust standard error clustered at patient level to explore the variations in the levels and growths of healthcare transition readiness.
RESULTS Our sample (n = 144) ranged in age from 14-22 years. Age was significantly and positively associated with both the level and growth of TRxANSITION Scale™ scores (P < 0.01). Many healthcare transition (HCT) skills were acquired between ages 12 and 14 years, but others were not mastered until after age 18, including self-management skills.
CONCLUSION This is one of the first studies to describe the longitudinal course of HCT skill acquisition among AYA with IBD, providing benchmarks for evaluating transition interventions.
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Self-efficacy and Resilience Are Useful Predictors of Transition Readiness Scores in Adolescents with Inflammatory Bowel Diseases. Inflamm Bowel Dis 2017; 23:341-346. [PMID: 28178002 DOI: 10.1097/mib.0000000000001038] [Citation(s) in RCA: 77] [Impact Index Per Article: 9.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
BACKGROUND Adolescence is a vulnerable period for those afflicted with inflammatory bowel disease (IBD). There is limited knowledge of factors influencing transition readiness in this population. We sought to determine whether self-efficacy and resilience would be informative predictors of transition readiness independent of age. METHODS Patients with IBD aged 16 to 23 years cared for in a pediatric setting were prospectively enrolled. On entry, patients filled out the Transition Readiness Assessment Questionnaire (TRAQ); IBD Self-Efficacy Scale-Adolescent (IBD-SES-A); and the Connor-Davidson Resilience Scale. Demographic data and disease-specific information were collected from the medical record and by the provider. General linear modeling and autocorrelation were performed to investigate predictors of transition readiness. RESULTS Eighty-seven patients (62 Crohn's disease and 25 ulcerative colitis) were included, with a median age of 19 years (interquartile range 1-3: 17-20; min-max: 16-23). After controlling for age, the IBD-SES-A predicted TRAQ [F(1) = 11.69, R = 0.16, P = 0.001], accounting for 16% of the variance. The Connor-Davidson Resilience Scale also independently predicted TRAQ score [F(1) = 6.45, R = 0.09, P = 0.01], accounting for 9% of the variance. The IBD-SES-A and Connor-Davidson Resilience Scale were significantly auto correlated (r = 0.044, P = 0.001); in the final predictive model, only IBD-SES-A was predictive of TRAQ [F(1) = 4.01, R = 0.12, P = 0.004]. None of the patients' demographic, disease, or socioeconomic parameters informed transition readiness once self-efficacy and resilience were considered. CONCLUSIONS This is the first study to identify a reliable predictor of transition readiness scores in adolescents with IBD that does not seem to be influenced by age.
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