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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: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 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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2
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Feeney CD, Sadun RE, Manning A, Trinh JV. Bridging the Gap: A Pilot Study of a Health Care Transition Podcast Curriculum and Standardized Patient Case for Graduate Medical Education Trainees. Cureus 2024; 16:e72018. [PMID: 39569288 PMCID: PMC11577970 DOI: 10.7759/cureus.72018] [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: 08/23/2024] [Accepted: 10/21/2024] [Indexed: 11/22/2024] Open
Abstract
Introduction Pediatric to adult health care transition (HCT) is critical to maintaining the health and wellness of patients, and pediatric and adult providers often do not feel prepared to shepherd patients through this process. Methods We designed an HCT curriculum consisting of nine podcasts paired with existing ambulatory experiential learning opportunities for internal medicine-pediatric residents (n=6). Before and after the curriculum we evaluated resident HCT self-assessment and resident performance working with a standardized patient (SP) and standardized parent in a novel objective structured clinical examination (OSCE) station designed to assess HCT skills. Results Residents improved in all HCT self-assessment goals (Likert 1-5; average score increasing from 2.4 to 3.93; p= 0.0002) and in their overall OSCE performance (Likert 1-5; average score increasing from 2.6 to 4.1; p=0.002). Conclusion By combining portable didactic educational materials with intentional experiential learning opportunities, the HCT curriculum herein described improved residents' knowledge and skills related to helping adolescent and young adult patients through HCT. This curriculum could be easily adapted for implementation at other institutions and across disciplines. In addition, we offer a standardized patient case for use in assessing HCT skills.
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Affiliation(s)
- Colby D Feeney
- Department of Medicine, Duke University School of Medicine, Durham, USA
- Department of Pediatrics, Duke University School of Medicine, Durham, USA
| | - Rebecca E Sadun
- Department of Medicine, Duke University School of Medicine, Durham, USA
- Department of Pediatrics, Duke University School of Medicine, Durham, USA
| | - Alison Manning
- Department of Psychiatry and Human Behavior, The Warren Alpert Medical School of Brown University, Providence, USA
| | - Jane V Trinh
- Department of Medicine, Duke University School of Medicine, Durham, USA
- Department of Pediatrics, Duke University School of Medicine, Durham, USA
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Agrawal A, Wells D, Kisielewski M, Misra S, Doolittle B. Subspecialty Choices Among Medicine-Pediatrics Graduates: Results From a Four-Year National Program Director Survey. Cureus 2024; 16:e65665. [PMID: 39205729 PMCID: PMC11353556 DOI: 10.7759/cureus.65665] [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: 04/09/2024] [Accepted: 07/26/2024] [Indexed: 09/04/2024] Open
Abstract
Background and objectives Dual-trained medicine-pediatrics physicians (med-peds) play an important role in the healthcare ecosystem. Little is known about the subspecialty choices of med-peds residency graduates. This study aims to characterize the subspecialty choices of med-peds residency graduates. Methods The Medicine-Pediatrics Program Directors Association (MPPDA) administers an annual survey to the program directors of all med-peds residency programs accredited by the Accreditation Council for Graduate Medical Education (ACGME). This project represents aggregate survey data from 2020-2023. Results The number of program directors responding to the survey ranged from 80.8% (63/78) to 85.7% (66/77; mean response rate: 82.8%). About 465 of 1,245 (37%) graduates over the four years chose fellowship training, across 51 unique subspecialties. The top five selected pathways were: adult pulmonary and critical care 54 (11.6%), allergy and immunology 37 (7.9%), adult infectious diseases 30 (6.5%), adult cardiology 30 (6.5%), and pediatric cardiology 30 (6.5%). Conclusions Med-Peds residents pursue a diversity of subspecialty training and represent an important contribution to the subspecialty workforce. Improving combined subspecialty opportunities may increase participation by med-peds graduates and, in particular, may support the increasing need for pediatric subspecialists.
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Affiliation(s)
- Anoop Agrawal
- Internal Medicine-Pediatrics, Baylor College of Medicine, Houston, USA
| | - Daniel Wells
- Internal Medicine-Pediatrics, University of Tennessee Health Science Center College of Medicine, Memphis, USA
| | | | - Savita Misra
- Internal Medicine, Alliance for Academic Internal Medicine, Alexandria, USA
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Nardone OM, Martinelli M, de Sire R, Calabrese G, Caiazzo A, Testa A, Rispo A, Miele E, La Mantia A, D’Alessandro E, Fioretti MT, Limansky L, Ferrante M, Di Luna I, Staiano A, Castiglione F. Time to grow up: readiness associated with improved clinical outcomes in pediatric inflammatory bowel disease patients undergoing transition. Therap Adv Gastroenterol 2024; 17:17562848241241234. [PMID: 38827647 PMCID: PMC11143856 DOI: 10.1177/17562848241241234] [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: 08/23/2023] [Accepted: 03/06/2024] [Indexed: 06/04/2024] Open
Abstract
Background The transition from pediatric to adult healthcare in individuals with inflammatory bowel disease (IBD) poses significant challenges mainly due to the high burden of IBD during adolescence, a critical period of psychosocial development. So far, there are few longitudinal data linking transition readiness to long-term disease outcomes. Objective We aimed to assess patients' readiness to transition and its impact on clinical outcomes, quality of life, and adherence to therapy. Design An observational, prospective study was conducted in a tertiary adult and pediatric center, including adolescents aged ⩾17 years with a diagnosis of IBD, who underwent a 'structured transition' program including two joint adult-pediatric visits. Methods Transition readiness skills were assessed with the Transition Readiness Assessment Questionnaire (TRAQ). All patients completed the TRAQ at the time of recruitment, which occurred during the initial joint adult-pediatric visit, to determine those deemed ready for transition versus those not ready. The Morisky Medication Adherence Scale and the 36-Item Short Form Health Survey Questionnaire (SF-36) were also completed at baseline and after 12 months. Clinical outcomes were collected at the 12-month follow-up. Results In all, 80 patients were enrolled who had transitioned through a structured transition clinic and completed 12 months of follow-up. In total, 54 patients were ready for the transition, with a mean TRAQ = 3.2 ± 0.5. The number of clinical relapses and hospitalizations at 12 months was lower in ready compared to not-ready patients (p = 0.004 and p = 0.04, respectively). SF-36 did not differ between ready and not-ready patients and pre- and post-transition clinics (p > 0.05). Based on the receiver operating characteristic curve, a TRAQ cutoff ⩾3.16 could predict medication adherence with a sensibility of 77%, a specificity of 82%, and an AUC of 0.81 (0.71-0.91; p < 0.001). Conclusion Patients ready for transition had better outcomes at 12 months compared to those who were not ready. Therefore, readiness assessment tools should be integrated into transition management to ensure that interventions are targeted, patient-centered, and responsive to individuals' changing needs.
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Affiliation(s)
- Olga Maria Nardone
- Gastroenterology, Department of Public Health, AOU ‘Federico II’ of Naples, Via Pansini 5, Naples 80131, Italy
| | - Massimo Martinelli
- Section of Pediatrics, Department of Translational Medical Science, University Federico II of Naples, Naples, Italy
| | - Roberto de Sire
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Giulio Calabrese
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Anna Caiazzo
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Anna Testa
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Antonio Rispo
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Erasmo Miele
- Section of Pediatrics, Department of Translational Medical Science, University Federico II of Naples, Naples, Italy
| | - Alessia La Mantia
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Ermelinda D’Alessandro
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Maria Teresa Fioretti
- Section of Pediatrics, Department of Translational Medical Science, University Federico II of Naples, Naples, Italy
| | - Lara Limansky
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Mario Ferrante
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Imma Di Luna
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
| | - Annamaria Staiano
- Section of Pediatrics, Department of Translational Medical Science, University Federico II of Naples, Naples, Italy
| | - Fabiana Castiglione
- Gastroenterology, Department of Clinical Medicine and Surgery, University Federico II of Naples, Naples, Italy
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Brown JN, Blumhardt S, Lostak B, Acorda D, Weissbrod PA, Henningfeld JK, Gavini S, Anani AO, Brown A, Raol NP, Sterling L, Jiwani A, Bedwell JR, Ongkasuwan J. Transitions of care: An aerodigestive provider assessment survey. Int J Pediatr Otorhinolaryngol 2024; 180:111933. [PMID: 38692234 DOI: 10.1016/j.ijporl.2024.111933] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/10/2023] [Revised: 03/07/2024] [Accepted: 03/23/2024] [Indexed: 05/03/2024]
Abstract
OBJECTIVE To create, validate, and apply an aerodigestive provider assessment survey. METHODS A survey assessing provider knowledge and current practice in the transition of patients with chronic aerodigestive disorders from pediatric to adult care was drafted by a multidisciplinary expert panel. Once agreement of the initial survey items was obtained, the survey was distributed to a national multidisciplinary panel of aerodigestive experts for review. Responses from the national panel were systematically quantified and a content validity index (CVI) was calculated. A final survey was developed and distributed to pediatric and adult aerodigestive providers. RESULTS From the initial 22 items presented to the national panel, 20 of the initial questions were included in the final instrument. Two additional questions were developed as a result of feedback from the expert panel. All items included in the survey had an Item Content Validity Index (I-CVI) of >0.85. The average Scale CVI in proportion to the average proportion of relevance (S-CVI/Ave) for the tool was 0.88. The average Scale CVI in proportion to universal agreement (S-CVI/UA) was 0.52. The survey was then administered to pediatric and adult specialty providers at our institution. Twenty-two providers completed the final survey. CONCLUSION The content validity index measurements from this newly developed survey suggest that it is a valid tool for assessing current knowledge and practice in care transitions among patients with complex aerodigestive needs. The survey developed in this project has been used to identify knowledge gaps and process issues that can be addressed to ease the transition of adolescents from pediatric specialty care into adult specialty care.
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Affiliation(s)
- Jennifer N Brown
- Department of Otolaryngology, Texas Children's Hospital, 6701 Fannin Street, Houston, TX, 77030, USA.
| | - Sarah Blumhardt
- Department of Otolaryngology, Baylor College of Medicine, 1977 Butler Blvd, Suite E5.200, Houston, TX, 77030, USA.
| | - Brittany Lostak
- Department of Otolaryngology, Baylor College of Medicine, 1977 Butler Blvd, Suite E5.200, Houston, TX, 77030, USA.
| | - Darlene Acorda
- Department of Critical Care Medicine, Texas Children's Hospital, 6651 Main Street, MC E1420, Houston, TX, 77030, USA.
| | - Philip A Weissbrod
- Department of Otolaryngology, University of California San Diego Health System - San Diego, CA, 9500 Gilman Drive, La Jolla, CA, 92093, USA.
| | - Jennifer K Henningfeld
- Department of Pediatric Pulmonology and Sleep Medicine, Medical College of Wisconsin, 8915 W. Connell Court, Milwaukee, MI, 53226, USA.
| | - Sravanya Gavini
- Department of Gastroenterology, UT Southwestern, 1801 Inwood Road, Suite 102, Dallas, TX, 75390, USA.
| | - Anthony O Anani
- Department of Gastroenterology, Cook Children's Hospital, 4200 W. University, Prosper, TX, 75078, USA.
| | - Ashley Brown
- Department of Speech and Language Pathology, Children's Medical Center Dallas, 2350 N. Stemmons Fwy, Ste F5300, Dallas, TX, 75207, USA.
| | - Nikhila P Raol
- Department of Pediatric Otolaryngology, Emory University School of Medicine, Children's Healthcare of Atlanta, 1400 Tullie Road NE, Atlanta, GA, 30329, USA.
| | - Laurie Sterling
- Adult Speech and Language Pathology, Houston Methodists Hospitals, 18123 Upper Bay Rd, Ste 400, Houston, TX, 77058, USA.
| | - Ali Jiwani
- Department of Pulmonology, Orlando Health, 22 W. Underwood St, Orlando, FL, 32806, USA.
| | - Joshua R Bedwell
- Department of Otolaryngology, Texas Children's Hospital, 6701 Fannin Street, Houston, TX, 77030, USA; Department of Otolaryngology, Baylor College of Medicine, 1977 Butler Blvd, Suite E5.200, Houston, TX, 77030, USA.
| | - Julina Ongkasuwan
- Department of Otolaryngology, Texas Children's Hospital, 6701 Fannin Street, Houston, TX, 77030, USA; Department of Otolaryngology, Baylor College of Medicine, 1977 Butler Blvd, Suite E5.200, Houston, TX, 77030, USA.
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Vernon‐Roberts A, Chan P, Christensen B, Day AS, Havrlant R, Giles E, Williams A. Transitional care of adolescents with inflammatory bowel disease to adult services varies widely across Australia and New Zealand. JGH Open 2024; 8:e13032. [PMID: 38268957 PMCID: PMC10805482 DOI: 10.1002/jgh3.13032] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/14/2023] [Revised: 11/07/2023] [Accepted: 12/21/2023] [Indexed: 01/26/2024]
Abstract
Background and Aim Children and adolescents account for approximately 14% of inflammatory bowel disease (IBD) diagnoses. At an appropriate age and level of development adolescents with IBD have their care transferred from the pediatric to adult clinical team during a process termed "transition". The study aim was to survey pediatric gastroenterologists throughout Australasia to identify commonality in the transition process to contribute to standardized guideline development. Methods A descriptive survey captured key variables: transition clinic format, process and infrastructure, transition assessments, and guidelines. The survey was distributed electronically to 59 Pediatric Gastroenterologists throughout Australasia in January 2023. Results Seventeen (29%) clinicians completed the survey: Australia 13 (76%). New Zealand 4 (24%). Thirteen (76%) respondents had access to a dedicated IBD transition clinic. Adolescents attended transition clinics 1-7 times, and the main processes transferred were: prescription provision, biologic appointments, and adult team contacts. Transition was first discussed age 13-15 years (53%), or 16-18 years (47%), with the main discussion topics including: continuing adherence (88%), smoking (59%), alcohol use (59%), recreational drug use (59%). Transition readiness assessments were done infrequently (24%). The minority (24%) used formal guidelines to inform the transition process, but 15 (88%) considered the development of a standardized Australasian guideline as beneficial/extremely beneficial. Conclusions This survey highlighted that transition care for adolescents with IBD is variable across Australasia. Australasian guideline development may optimize the transition process for adolescents with IBD and improve their longitudinal outcomes.
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Affiliation(s)
| | - Patrick Chan
- Department of GastroenterologyLiverpool HospitalSydneyAustralia
| | - Britt Christensen
- Department of GastroenterologyRoyal Melbourne HospitalMelbourneAustralia
| | - Andrew S Day
- Department of PaediatricsUniversity of OtagoChristchurchNew Zealand
| | | | - Edward Giles
- Department of PaediatricsMonash Children's HospitalMelbourneAustralia
| | - Astrid‐Jane Williams
- Department of GastroenterologyLiverpool HospitalSydneyAustralia
- South Western Sydney Clinical SchoolUniversity of New South WalesAustralia
- Ingham Institute for Applied Medical ResearchSydneyAustralia
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Zhou M, Xu Y, Zhou Y. Factors influencing the healthcare transition in Chinese adolescents with inflammatory bowel disease: a multi-perspective qualitative study. BMC Gastroenterol 2023; 23:445. [PMID: 38110881 PMCID: PMC10729466 DOI: 10.1186/s12876-023-03080-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/25/2023] [Accepted: 12/08/2023] [Indexed: 12/20/2023] Open
Abstract
BACKGROUND The development and implementation of the transition from pediatric to adult healthcare systems for adolescents with inflammatory bowel disease (IBD) should consider stakeholders' perceptions. This study aimed to explore the factors influencing the transition of Chinese adolescents with IBD from the perspectives of patients, parents, and healthcare providers. METHODS A descriptive qualitative research was conducted. Purposive sampling was used to recruit 36 participants, including 13 patients, 13 parents, and 10 providers, from a tertiary pediatric IBD center, a tertiary adult IBD center, and the China Crohn's & Colitis Foundation in Zhejiang Province, China. Individual semi-structured interviews were used to collect data on facilitators and barriers to the transition process. Conventional content analysis was used to analyze the interview transcripts. RESULTS Nine primary themes were identified. Patients with young age, prolonged disease duration, severe disease, academic pressures such as the Gaokao, low level of disease acceptance, limited transition consciousness, low self-efficacy, poor transition communication, and inadequate medical transition system serve as barriers. While patients with the mentality of guilt towards their parents; parents with low education levels and intensive work schedules, high levels of disease acceptance, and situations of parent-child separation; stakeholders with high transition consciousness, high transition self-efficacy, and effective transition communication act as facilitators. Furthermore, community support and hospital guide services were also contributing factors during the transition. CONCLUSIONS This study offers comprehensive insights into the factors affecting the transition of Chinese adolescent IBD patients. The process is continuously influenced by stakeholders, community, and healthcare environments and policies. Identifying these factors provides healthcare providers with a reference for developing and implementing targeted transition interventions.
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Affiliation(s)
- Mi Zhou
- School of Nursing, Zhejiang Chinese Medical University, 548 Binwen Road, Binjiang District, Hangzhou, Zhejiang, 310053, China
| | - Youjun Xu
- School of Nursing, Zhejiang Chinese Medical University, 548 Binwen Road, Binjiang District, Hangzhou, Zhejiang, 310053, China
| | - Yunxian Zhou
- School of Nursing, Zhejiang Chinese Medical University, 548 Binwen Road, Binjiang District, Hangzhou, Zhejiang, 310053, China.
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Pipicella JL, Vernon-Roberts A, Dutt S, Giles E, Day AS, Connor SJ, Andrews JM. Co-design and Consultation Ensure Consumer Needs Are Met: Building an eHealth Platform for Children with Inflammatory Bowel Disease. Dig Dis Sci 2023; 68:4368-4380. [PMID: 37897556 PMCID: PMC10635922 DOI: 10.1007/s10620-023-08146-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/03/2023] [Accepted: 10/05/2023] [Indexed: 10/30/2023]
Abstract
BACKGROUND Crohn's Colitis Care is an adult inflammatory bowel disease eHealth system. Crohn's Colitis Care required additional pediatric functionality to enable life-long records and mitigate transition inadequacies. AIM This study describes and evaluates a consensus method developed to ensure consumer needs were met. METHODS Pediatric-specific functionality and associated resources considered important for inclusion were developed by a clinician consensus group. This group was divided into thematic subgroups and underwent two voting rounds. The content validity index was used to determine items reaching consensus. Children with inflammatory bowel disease and their parents were later shown a descriptive list of non-clinical inclusion topics proposed by the consensus group, and asked to vote on whether topic-related functionality and resources should be included. RESULTS The consensus process consulted 189 people in total (38 clinicians, 32 children with inflammatory bowel disease and 119 parents). There was agreement across all groups to incorporate functionality and resources pertaining to quality of life, mental health, self-management, and transition readiness; however, divergence was seen for general inflammatory bowel disease facts, your inflammatory bowel disease history, and satisfaction. Cost saw the greatest disparity, being less supported by consumers compared to clinicians. Over 75% of consumers agreed it would be okay for appointments to take longer for survey completion, and > 90% thought Crohn's Colitis Care should allow consumers to ask their treating team questions. CONCLUSIONS Widespread consumer co-design and consultation were important in unveiling differing perspectives to ensure Crohn's Colitis Care was built to support both consumer and clinician perspectives. Consumers collaborate to create a list of functionality and resources to be included in software (left), influencing the final product build (right).
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Affiliation(s)
- Joseph Louis Pipicella
- Medicine & Health (South Western Sydney Clinical School), University of New South Wales, Sydney, NSW, Australia.
- Crohn's Colitis Cure, Sydney, NSW, Australia.
- Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group, Ingham Institute for Applied Medical Research, 1 Campbell St, Liverpool, NSW, 2170, Australia.
| | | | - Shoma Dutt
- Department of Gastroenterology, The Children's Hospital at Westmead, Sydney Children's Hospitals Network, Westmead, NSW, Australia
- The University of Sydney Children's Hospital Westmead Clinical School, Sydney, NSW, Australia
| | - Edward Giles
- Department of Paediatrics, Monash University, Clayton, VIC, Australia
| | - Andrew S Day
- Department of Paediatrics, University of Otago Christchurch, Christchurch, New Zealand
| | - Susan Jane Connor
- Medicine & Health (South Western Sydney Clinical School), University of New South Wales, Sydney, NSW, Australia
- Crohn's Colitis Cure, Sydney, NSW, Australia
- Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group, Ingham Institute for Applied Medical Research, 1 Campbell St, Liverpool, NSW, 2170, Australia
- Department of Gastroenterology and Hepatology, Liverpool Hospital, Sydney, NSW, Australia
| | - Jane Mary Andrews
- Crohn's Colitis Cure, Sydney, NSW, Australia
- Central Adelaide Local Health Network, Adelaide, SA, Australia
- Faculty of Health Sciences, University of Adelaide, Adelaide, SA, Australia
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Culnane E, Loftus H, Peters R, Haydar M, Hodgson A, Herd L, Hardikar W. Enabling successful transition-Evaluation of a transition to adult care program for pediatric liver transplant recipients. Pediatr Transplant 2022; 26:e14213. [PMID: 34967989 DOI: 10.1111/petr.14213] [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: 08/06/2021] [Revised: 10/18/2021] [Accepted: 12/07/2021] [Indexed: 11/30/2022]
Abstract
BACKGROUND This study aimed to evaluate the transition to adult care program instituted for liver transplant recipients (LTRs) at a large tertiary pediatric hospital in Melbourne, Australia. Evaluation included the change in a Global Assessment Measure (GAM) before and after the transition program, satisfaction with the program, and measures of transition success including rejection rates and attendance at appointments post-transfer. We hypothesized that the introduction of our structured transition program would improve disease understanding, health system understanding, and self-care. We also hypothesized that those who had undergone the transition program would have lower failure to attend rates and lower rates of rejection than historical controls. METHODS A LTR transition program was instituted at our service from 2013 to 2015. The program involved initial assessment of competencies with a Global Assessment Measure (GAM), followed by the introduction of a personalized goal setting program addressing issues identified in dedicated transition clinics. Assessment of competencies was compared between the commencement of the program and immediately prior to transfer. Patient satisfaction with the transition process was assessed at an interview 6-12 months after transfer to the adult service. Rejection rates and failure to attend rates were compared between the intervention group and a group of LTRs who did not receive the intervention. RESULTS Twenty-eight LTRs participated in the study; 20 received the transition intervention and 8 served as controls. Within the intervention group, all domains of transition competency and reported anxiety regarding transferring had significantly improved at the conclusion of the intervention and all reported satisfaction with the transition program with most (81%) reporting readiness to transfer. There were no significant differences in rejection rates or failure to attend rates between those who did and did not receive the transition intervention. CONCLUSION A longitudinal holistic transition program has the potential to positively impact the competencies and readiness of LTRs to successful transition and transfer to adult care.
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Affiliation(s)
- Evelyn Culnane
- Transition Support Service, Department of Adolescent Medicine, The Royal Children's Hospital (RCH) Melbourne, Parkville, Victoria, Australia
| | - Hayley Loftus
- Transition Support Service, Department of Adolescent Medicine, The Royal Children's Hospital (RCH) Melbourne, Parkville, Victoria, Australia.,Health Services, Murdoch Children's Research Institute, Melbourne, Victoria, Australia
| | - Rebecca Peters
- Transition Support Service, Department of Adolescent Medicine, The Royal Children's Hospital (RCH) Melbourne, Parkville, Victoria, Australia
| | - Madeleine Haydar
- Transition Support Service, Department of Adolescent Medicine, The Royal Children's Hospital (RCH) Melbourne, Parkville, Victoria, Australia
| | - Alexandra Hodgson
- Department of Gastroenterology and Hepatology, The Royal Children's Hospital (RCH) Melbourne, Parkville, Victoria, Australia
| | - Lauren Herd
- Department of Gastroenterology and Hepatology, The Royal Children's Hospital (RCH) Melbourne, Parkville, Victoria, Australia
| | - Winita Hardikar
- Department of Gastroenterology and Hepatology, The Royal Children's Hospital (RCH) Melbourne, Parkville, Victoria, Australia.,Department of Pediatrics, University of Melbourne, Parkville, Victoria, Australia.,Population Allergy, Murdoch Children's Research Institute, Melbourne, Victoria, Australia
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10
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Hald M, Carlsen K, Wewer V. Transition of Adolescents with Inflammatory Bowel Disease-Are the Pediatric Teams up to the Task? CHILDREN (BASEL, SWITZERLAND) 2021; 8:900. [PMID: 34682165 PMCID: PMC8534990 DOI: 10.3390/children8100900] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 09/19/2021] [Revised: 10/06/2021] [Accepted: 10/07/2021] [Indexed: 11/16/2022]
Abstract
Our aim was to describe the challenges of the transition process of adolescents with inflammatory bowel disease (IBD), as seen from a pediatric-care perspective, to clarify the key obstacles and propose how to move forward. Semi-structured individual interviews of pediatric gastroenterologists and nurses were analyzed and interpreted according to the principles of social science. It is a challenge for the pediatric team to continuously match, support, and gently guide the ever-changing adolescent patient. All adolescent patients should be offered guidance regardless of their starting point, and specific individual needs should be taken into consideration. Adolescents burdened by psychosocial challenges require extra support. Early and continued interdisciplinary effort is essential. Collaboration with the parents must be continuously adapted to prepare them for their new roles and responsibilities. The shift from the pediatric family-focused approach to the individualistic approach of the Adult Gastroenterology Department signifies a fundamental change. Equipping adolescents with disease-management skills remains a comprehensive task. The following crucial questions remain: Who is capable of performing the transition? Who can dedicate the necessary resources for performing the transition? A transition center led by both pediatricians and adult gastroenterologists in an interdisciplinary setting that includes transition-trained persons may be the solution.
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Hart LC, Díaz-González de Ferris M, Nazareth M, Faldowski RA, Rak E, Hooper SR, Ndugga M, van Tilburg MAL. Evaluation of the TRxANSITION Index-Parent Version for Assessment of Readiness to Transition to Adult Care Among Youth with Chronic Conditions. J Pediatr Nurs 2021; 58:1-8. [PMID: 33278706 DOI: 10.1016/j.pedn.2020.08.010] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/11/2020] [Revised: 08/11/2020] [Accepted: 08/11/2020] [Indexed: 11/26/2022]
Abstract
PURPOSE To develop and evaluate a parent-proxy measure of youth HCT readiness: the TRxANSITION Index-Parent Version. DESIGN AND METHODS We recruited parents (77% female) and youth (ages 12 to 25) to complete transition readiness measures during outpatient clinic visits. The TRxANSITION Index-Parent Version contains two domains: the Parent Knowledge Domain assessing a parent's knowledge of their youth's illness, and the Parent Proxy Domain, which provides a parental perspective regarding a youth's transition readiness skills. We evaluated the TRxANSITION Index - Parent Version for differences between parent and youth reports of HCT readiness, associations between parent's score and youth's characteristics, and item-category, item-sub-index, and sub-index category correlations. RESULTS Data from 93 parents-youth dyads were analyzed. Parents scored significantly higher than youth in the Parent Knowledge Domain and similarly in the Parent Proxy Domain. Parents of daughters had significantly higher scores in the Parent Knowledge Domain than parents of sons and reported similar scores to Parents of sons in the Parent Proxy Domain. Only the self-management sub-index significantly correlated with youth's age. The sub-index-domain, item-sub-index, and item-domain correlations assessed were generally large in magnitude (r > 0.5). CONCLUSIONS The TRxANSITION Index-Parent Version shows promise as a means of assessing parent knowledge of a youth's illness and may provide an accurate proxy assessment of a youth HCT readiness skills. PRACTICE IMPLICATIONS Obtaining parental perspective on a youth's HCT readiness may provide useful clinical information during the transition process.
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Affiliation(s)
- Laura C Hart
- The Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, NC, United States of America.
| | - Maria Díaz-González de Ferris
- Division of General Pediatrics and Adolescent Medicine, University of North Carolina School of Medicine, 231 MacNider Building, NC, United States of America
| | - Meaghan Nazareth
- Division of General Pediatrics and Adolescent Medicine, University of North Carolina School of Medicine, 231 MacNider Building, NC, United States of America
| | - Richard A Faldowski
- Department of Allied Health Sciences, University of North Carolina at Chapel Hill, NC, United States of America
| | - Eniko Rak
- Division of Clinical Rehabilitation and Mental Health Counseling, Department of Allied Health Sciences, University of North Carolina at Chapel Hill, NC, United States of America
| | - Stephen R Hooper
- Department of Allied Health Sciences, University of North Carolina at Chapel Hill, NC, United States of America
| | - Maggwa Ndugga
- Division of General Pediatrics and Adolescent Medicine, University of North Carolina School of Medicine, 231 MacNider Building, NC, United States of America
| | - Miranda A L van Tilburg
- Department of Medicine, University of North Carolina at Chapel Hill, NC, United States of America; College of Pharmacy and Health Sciences, Campbell University, NC, United States of America; School of Social Work, University of Washington, NC, United States of America
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A Cross-Sectional Survey on the Transitional Care of Adolescents with Inflammatory Bowel Disease in Hungary. J Pediatr Nurs 2020; 55:e279-e285. [PMID: 32624314 DOI: 10.1016/j.pedn.2020.06.002] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/25/2020] [Revised: 06/04/2020] [Accepted: 06/07/2020] [Indexed: 01/16/2023]
Abstract
PURPOSE Since little is known about transitional care practices of adolescents with inflammatory bowel diseases (IBD) in Central-Eastern Europe, we aimed to investigate the currently applied transition practices in Hungary. DESIGN AND METHODS A nationwide, multicentre survey was conducted with the invitation of 41 pediatric and adult IBD centres in February 2019.We developed a 34-item questionnaire, which included single- and multiple-choice questions related to the current clinical practice of IBD transition. RESULTS The overall response rate was 31.7% (13/41); answers came predominantly from tertiary centres. Only 15.4% of the respondent centres followed international IBD guidelines. The majority of the IBD centres provided transition support; however, responses revealed a marked heterogeneity of these services. Joint visits were held only in 54% of the clinics. Gastroenterologists and next of kin are not provided education regarding transition across most centres (85 and 92%). Although adolescents received age-specific education, transition readiness was not measured. More IBD nurses and dietitians were employed in adult centres than in pediatric ones. CONCLUSIONS The current survey revealed critical gaps in the Hungarian IBD transition practices. As the beneficial effects of structured IBD transition programmes are recognized in Hungary, there is a growing need for the introduction of new, more effective transition practices. PRACTICE IMPLICATIONS Our results can serve as a basis for planning more effective transition strategies.
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Sánchez Sánchez C, Tolín Hernani MDM, Álvarez Calatayud G, Miranda Cid MDC, Navas López VM, Marín Jiménez I, Menchen LA, García Fernández P, Merino Sánchez-Cañete A. Status of transition care in inflammatory bowel disease in Spain. Different medical perspectives. REVISTA ESPANOLA DE ENFERMEDADES DIGESTIVAS 2020; 111:833-838. [PMID: 31566409 DOI: 10.17235/reed.2019.6310/2019] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
Abstract
INTRODUCTION transition is important for a successful follow-up of adolescents with inflammatory bowel disease (IBD). The objectives of the study were to establish the situation of transition in Spain and to identify needs, requirements and barriers to transition from pediatric and adult gastroenterologist perspectives. METHODS a structured survey for self-completion using the REDCap platform was distributed via the Spanish Society for Pediatric Gastroenterology, Hepatology and Nutrition (SEGHNP) and the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU). The questionnaire contained closed and ranked questions concerning transition, perceived needs, organizational, clinician and patient related barriers to transition. RESULTS one hundred and forty surveys were answered, 53% in pediatrics (PG) and 47% from adult gastroenterologists (AG) among 90 hospitals; 66% of them were reference centers. There was a higher response from pediatricians (18.2%) versus adult gastroenterologists (8.3%) (p = 0.03). A structured transition program is adequate in 42.2% centers. A well-structured transition was perceived as very important by 79.5% of PG and 63% of AG (p = 0.03). A higher proportion of both groups identified inadequacies in the preparation of adolescents for transfer (43% and 38%, p = ns). The main deficit areas were the lack of knowledge about disease and treatment as well as the lack of self-advocacy and care coordination. Lack of resources, time and critical mass of patients were the highest ranked barriers by both groups. AG and PG (54% and 55%) highlighted suboptimal training in adolescent medicine. CONCLUSIONS in Spain, nearly half of the centers have developed a structured transition program. Lack of training, time and insufficient resources are the main barriers for a successful transition.
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Affiliation(s)
| | | | | | | | - Víctor M Navas López
- Gastroenterología,Hepatología y Nutrición Infantil, Hospital Regional Universitario de Málaga, España
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Nardone OM, Iacucci M, Ghosh S, Castiglione F. Can a transition clinic bridge the gap between paediatric and adult inflammatory bowel disease care models? Dig Liver Dis 2020; 52:516-527. [PMID: 32234418 DOI: 10.1016/j.dld.2020.02.009] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/24/2019] [Revised: 02/19/2020] [Accepted: 02/24/2020] [Indexed: 02/06/2023]
Abstract
Transition care in inflammatory bowel disease is increasingly recognized as challenging given the inherent differences between paediatric and adult health care models, disease characteristics and treatment strategies. Transition is a dynamic process involving adolescents and young adults that are moving from a paediatric to an adult health care setting, and it should be flexible, continually updated and tailored to each patient. The implementation of a transition clinic is essential given the increasing incidence of the paediatric population with inflammatory bowel disease and the lifelong impact of this disease. The key question is when and how to structure transition according to the adolescent's clinical, psycho-social, educational needs and expectations to ensure continuity of care. In the attempt to improve the management of transition in inflammatory bowel disease and address the wide gap between adult and child care, we provide an update of the transition clinic and we propose a "treat to target" approach in transition to facilitate an effective and successful transition programme. In the changing landscape of the treatment of inflammatory bowel disease, further studies are necessary to determine the role of the transition clinic in determining the choice and strategy of therapy and its monitoring and the adoption of newer strategies such as biomarkers guided treating to target.
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Affiliation(s)
- Olga Maria Nardone
- Institute of Translational Medicine and Institute of Immunology and Immunotherapy, University of Birmingham, UK; Gastroenterology, Department of Clinical Medicine and Surgery University Federico II of Naples, Italy.
| | - Marietta Iacucci
- Institute of Translational Medicine and Institute of Immunology and Immunotherapy, University of Birmingham, UK; University Hospitals Birmingham NHS Foundation Trust, Queen Elizabeth Hospital Birmingham, UK; NIHR Biomedical Research Centre, University of Birmingham and University Hospitals NHS Foundation Trust Birmingham, UK; Gastroenterology, University of Calgary, Calgary, Canada
| | - Subrata Ghosh
- Institute of Translational Medicine and Institute of Immunology and Immunotherapy, University of Birmingham, UK; University Hospitals Birmingham NHS Foundation Trust, Queen Elizabeth Hospital Birmingham, UK; NIHR Biomedical Research Centre, University of Birmingham and University Hospitals NHS Foundation Trust Birmingham, UK; Gastroenterology, University of Calgary, Calgary, Canada
| | - Fabiana Castiglione
- Gastroenterology, Department of Clinical Medicine and Surgery University Federico II of Naples, Italy
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15
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Shapiro JM, El-Serag HB, Gandle C, Peacock C, Denson LA, Fishman LN, Hernaez R, Hou JK. Recommendations for Successful Transition of Adolescents With Inflammatory Bowel Diseases to Adult Care. Clin Gastroenterol Hepatol 2020; 18:276-289.e2. [PMID: 31077824 DOI: 10.1016/j.cgh.2019.04.063] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/14/2018] [Revised: 04/22/2019] [Accepted: 04/26/2019] [Indexed: 02/07/2023]
Abstract
Adolescents and young adults diagnosed with inflammatory bowel diseases (IBDs) in pediatric care are vulnerable during their transition to adult care. There are 6 core elements of transition from pediatric to adult IBD care. We identified gaps in this transition and make recommendations for clinical practice and research. There have been few studies of transition policy (core element 1) or studies that tracked and monitored patients through the transition (core element 2). Several studies have assessed transition readiness (core element 3), but instruments for assessment were not validated using important outcomes such as disease control, health care use, adherence, quality of life, or continuity of care. There have been no studies of best practices for transition planning (core element 4), including how to best educate patients and facilitate gradual shifts in responsibility. A small number of longitudinal studies have investigated transfer of care (core element 5), but these were conducted outside of the United States; these studies found mixed results in short- and intermediate-term outcomes after transition completion (core element 6). We discuss what is known about the transition from pediatric to adult care for IBD, make recommendations to improve this process, and identify areas for additional research.
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Affiliation(s)
- Jordan M Shapiro
- Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas.
| | - Hashem B El-Serag
- Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas
| | - Cassandra Gandle
- Department of Medicine, Baylor College of Medicine, Houston, Texas
| | - Cynthia Peacock
- Department of Medicine, Baylor College of Medicine, Houston, Texas
| | - Lee A Denson
- Division of Pediatric Gastroenterology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
| | - Laurie N Fishman
- Division of Pediatric Gastroenterology, Boston Children's Hospital, Boston, Massachusetts
| | - Ruben Hernaez
- Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas
| | - Jason K Hou
- Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas
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Evaluation of a Novel Educational Tool in Adolescents With Inflammatory Bowel Disease: The NEAT Study. J Pediatr Gastroenterol Nutr 2019; 69:564-569. [PMID: 31261247 PMCID: PMC8024984 DOI: 10.1097/mpg.0000000000002431] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/10/2022]
Abstract
OBJECTIVES Among adolescents with inflammatory bowel disease (IBD), nonadherence rates are 50 to 88% across medications. Improving education in adults with IBD has been shown to improve coping and adherence to treatment in adults with IBD. Therapeutic patient education (TPE) has been used in patients with chronic diseases to train patients in skills to support treatment adaptation and condition management. This study tested the feasibility and preliminary efficacy of a novel TPE intervention in adolescents with IBD. METHODS In this pilot, mixed-methods study, we evaluated the feasibility and preliminary efficacy of TPE with the IBD Pocket Guide on medication adherence, IBD knowledge, and transition readiness in adolescents ages 11 to 18 years. Medication adherence was monitored using a MedMinder Pill Dispensing system. Participants who were <90% adherent during a 4-week pre-intervention monitoring period were randomized to either a usual care group or an educational intervention (EI) group. Participants were followed for an additional 4 weeks after intervention. RESULTS Trends were found in the EI group indicating improved medication adherence and IBD knowledge compared with the usual care group, though differences between groups did not reach statistical significance. Qualitative data showed that participants perceived that they had improved knowledge after the educational intervention. CONCLUSIONS Therapeutic patient education may be beneficial for improving patient medication adherence and IBD knowledge. Future directions include testing the effects of the intervention with a larger sample.
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17
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Lampe C, McNelly B, Gevorkian AK, Hendriksz CJ, Lobzhanidze TV, Pérez-López J, Stepien KM, Vashakmadze ND, Del Toro M. Transition of patients with mucopolysaccharidosis from paediatric to adult care. Mol Genet Metab Rep 2019; 21:100508. [PMID: 31687335 PMCID: PMC6819742 DOI: 10.1016/j.ymgmr.2019.100508] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/03/2019] [Accepted: 08/21/2019] [Indexed: 12/16/2022] Open
Abstract
Mucopolysaccharidoses (MPS) are rare disorders associated with enzyme deficiencies, resulting in glycosaminoglycan (GAG) accumulation in multiple organ systems. As patients increasingly survive to adulthood, the need for a smooth transition into adult care is essential. Using case studies, we outline strategies and highlight the challenges of transition, illustrating practical solutions that may be used to optimise the transition process for patients with MPS disorders. Seven MPS case studies were provided by four European inherited metabolic disease centres; six of these patients transferred to an adult care setting and the final patient remained under paediatric care. Of the patients who transferred, age at the start of transition ranged between 14 and 18 years (age at transfer ranged from 16 to 19 years). While there were some shared features of transition strategies, they varied in duration, the healthcare professionals involved and the management of adult patients with MPS. Challenges included complex symptoms, patients' unwillingness to attend appointments with unfamiliar team members and attachment to paediatricians. Challenges were resolved by starting transition at an early age, educating patients and families, and providing regular communication with and reassurance to the patient and family. Sufficient time should be provided to allow patients to understand their responsibilities in the adult care setting while feeling assured of continued support from healthcare professionals. The involvement of a coordinated multidisciplinary team with expertise in MPS is also key. Overall, transition strategies must be comprehensive and individualised to patients' needs.
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Affiliation(s)
- C Lampe
- HELIOS Dr. Horst Schmidt Kliniken, Wiesbaden, Germany
| | - B McNelly
- Salford Royal NHS Foundation Trust, Salford, United Kingdom
| | - A K Gevorkian
- Research Center for Children's Health, Moscow, Russia
| | | | | | | | - K M Stepien
- Salford Royal NHS Foundation Trust, Salford, United Kingdom
| | | | - M Del Toro
- Vall d'Hebron University Hospital, Barcelona, Spain
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Rapley T, Farre A, Parr JR, Wood VJ, Reape D, Dovey-Pearce G, McDonagh J. Can we normalise developmentally appropriate health care for young people in UK hospital settings? An ethnographic study. BMJ Open 2019; 9:e029107. [PMID: 31501109 PMCID: PMC6738748 DOI: 10.1136/bmjopen-2019-029107] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/06/2023] Open
Abstract
OBJECTIVE The WHO has argued that adolescent-responsive health systems are required. Developmentally appropriate healthcare (DAH) for young people is one approach that could underpin this move. The aim of this study was to explore the potential for DAH to become normalised, to become a routine, taken-for-granted, element of clinical practice. DESIGN Qualitative ethnographic study. Analyses were based on procedures from first-generation grounded theory and theoretically informed by normalisation process theory. SETTING Two tertiary and one secondary care hospital in England. PARTICIPANTS 192 participants, health professionals (n=121) and managers (n=71) were recruited between June 2013 and January 2015. Approximately 1600 hours of non-participant observations in clinics, wards and meeting rooms were conducted, alongside 65 formal qualitative interviews. RESULTS We observed diverse values and commitments towards the care of young people and provision of DAH, including a distributed network of young person-orientated practitioners. Informal networks of trust existed, where specific people, teams or wards were understood to have the right skill-mix, or mindset, or access to resources, to work effectively with young people. As young people move through an organisation, the preference is to direct them to other young person-orientated practitioners, so inequities in skills and experience can be self-sustaining. At two sites, initiatives around adolescent and young adult training remained mostly within these informal networks of trust. At another, through support by wider management, we observed a programme that sought to make the young people's healthcare visible across the organisation, and to get people to reappraise values and commitment. CONCLUSION To move towards normalisation of DAH within an organisation, we cannot solely rely on informal networks and cultures of young person-orientated training, practice and mutual referral and support. Organisation-wide strategies and training are needed, to enable better integration and consistency of health services for all young people.
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Affiliation(s)
- Tim Rapley
- Department of Social Work, Education and Community Wellbeing, Northumbria University, Newcastle upon Tyne, UK
- Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
| | - Albert Farre
- School of Nursing and Health Sciences, University of Dundee, Dundee, UK
| | - Jeremy R Parr
- Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK
| | - Victoria J Wood
- Department of Applied Health Research, University College London, London, UK
| | - Debbie Reape
- Child Health Department, Northumbria Healthcare NHS Foundation Trust, North Shields, UK
| | - Gail Dovey-Pearce
- Child Health Department, Northumbria Healthcare NHS Foundation Trust, North Shields, UK
| | - Janet McDonagh
- Arthritis Research UK Centre for Epidemiology, Centre for Musculoskeletal Research, University of Manchester, Manchester, UK
- NIHR Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, Manchester, UK
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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: 22] [Impact Index Per Article: 3.7] [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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Hart LC, Patel-Nguyen SV, Merkley MG, Jonas DE. An Evidence Map for Interventions Addressing Transition from Pediatric to Adult Care: A Systematic Review of Systematic Reviews. J Pediatr Nurs 2019; 48:18-34. [PMID: 31220801 DOI: 10.1016/j.pedn.2019.05.015] [Citation(s) in RCA: 57] [Impact Index Per Article: 9.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/27/2019] [Revised: 05/20/2019] [Accepted: 05/22/2019] [Indexed: 11/28/2022]
Abstract
PROBLEM Adolescents and young adults with chronic illnesses continue to face barriers as they transition from pediatric to adult care. An evidence map can help to identify gaps in the transition literature to determine targets for future research. ELIGIBILITY CRITERIA We searched PubMed, CINAHL, PsycInfo, and Cochrane for systematic reviews published through February 2018. Eligible reviews included at least one comparative study testing a youth-focused intervention for improving transition with at least one quantitative health-related outcome reported. SAMPLE We identified 431 unique reviews in our search, and 37 reviews (containing 71 eligible primary studies) met inclusion criteria. RESULTS Most reviews (20 of 37) summarized some aspect of transition across diagnoses. Type 1 diabetes was the most common diagnosis studied (7 of 37 reviews and 24 of 71 primary studies). Only 14 of 71 primary studies focused on care after transfer to adult care. CONCLUSIONS The literature on interventions to improve transition to adult care has focused on a limited number of diagnoses, most commonly Type 1 diabetes. Common pediatric conditions, such as asthma, have not been studied with regard to transition. Efforts have been mainly targeted on transition preparation, with less focus on transition needs after transfer to adult care. IMPLICATIONS There is a need for transition research focused on common pediatric conditions and transition needs after transfer to adult care.
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Affiliation(s)
- Laura C Hart
- Nationwide Children's Hospital, Columbus, OH, United States of America; The Ohio State University College of Medicine, Departments of Pediatrics and Medicine, United States of America; The Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, United States of America.
| | | | | | - Daniel E Jonas
- The Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, United States of America; University of North Carolina at Chapel Hill, Department of Medicine, United States of America.
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Kumagai H, Kudo T, Uchida K, Kunisaki R, Sugita A, Ohtsuka Y, Arai K, Kubota M, Tajiri H, Suzuki Y, Shimizu T. Adult gastroenterologists' views on transitional care: Results from a survey. Pediatr Int 2019; 61:817-822. [PMID: 31206932 DOI: 10.1111/ped.13912] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/21/2018] [Revised: 04/16/2019] [Accepted: 05/15/2019] [Indexed: 01/06/2023]
Abstract
BACKGROUND In 2018, Japanese guidelines for autonomy support of patients with inflammatory bowel disease (IBD) in the transitional period were published. These guidelines, however, were prepared mainly by pediatric gastroenterologists. In order to improve such supportive guidelines, it is necessary for pediatric gastroenterologists to be aware of the attitudes and expectations of adult gastroenterologists. Accordingly, the first Japanese national survey designed to explore the views of adult gastroenterologists regarding successful transitional care was conducted. METHODS The survey involved institutions at which adult gastroenterologists in the Ministry of Health, Labor and Welfare of Japan's Inflammatory Bowel Diseases Study Group, were working. Physicians were contacted by conventional mail, and their answers were not anonymized. A total of 100 eligible adult institutions were identified. Further specific subgroup analysis was conducted. RESULTS A response rate of 34% was achieved. Seventy-six percent of the respondents had experienced some degree of difficulty when accepting patients with childhood-onset IBD referred from pediatric gastroenterologists. With regard to the ideal form of medical care for adolescent patients with IBD, transfer to adult care was supported by 94% of the respondents. Only 27% of respondents, however, stated they would have no hesitation in accepting patients referred from pediatric care centers. Two crucial areas requiring improvement were identified: inadequate clinical summaries and lack of patient independence from their parents/caregivers. CONCLUSIONS The present survey results reinforce the importance of a transitional program of education for childhood-onset IBD patients and the need to improve communication between adult and pediatric gastroenterologists.
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Affiliation(s)
- Hideki Kumagai
- Department of Pediatrics, Jichi Medical University, Shimotsuke City, Tochigi, Japan
| | - Takahiro Kudo
- Department of Pediatrics and Adolescent Medicine, Juntendo University Graduate School of Medicine, Bunkyo, Tokyo, Japan
| | - Keiichi Uchida
- Department of Gastrointestinal and Pediatric Surgery, Mie University Graduate School of Medicine, Tsu City, Mie, Japan
| | - Reiko Kunisaki
- Inflammatory Bowel Disease Center, Yokohama City University Medical Center, Yokohama City, Kanagawa, Japan
| | - Akira Sugita
- Inflammatory Bowel Disease Center, Yokohama Municipal Hospital, Yokohama City, Kanagawa, Japan
| | - Yoshikazu Ohtsuka
- Department of Pediatrics and Adolescent Medicine, Juntendo University Graduate School of Medicine, Bunkyo, Tokyo, Japan
| | - Katsuhiro Arai
- Division of Gastroenterology, National Center for Child Health and Development, Setagaya, Tokyo, Japan
| | - Mitsuru Kubota
- Division of General Practice, National Center for Child Health and Development, Setagaya, Tokyo, Japan
| | - Hitoshi Tajiri
- Department of Pediatrics, Osaka General Medical Center, Toshima, Osaka, Japan
| | - Yasuo Suzuki
- Inflammatory Bowel Disease Center, Sakura Medical Hospital, Toho University Medical Center, Sakura City, Chiba, Japan
| | - Toshiaki Shimizu
- Department of Pediatrics and Adolescent Medicine, Juntendo University Graduate School of Medicine, Bunkyo, Tokyo, Japan
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Pisano C, Sapci I, Karam PA, DeRoss AL, Costedio MM. Pediatric Colorectal Surgery: A Collaborative Approach From a Single Institution. J Surg Res 2019; 242:258-263. [PMID: 31108343 DOI: 10.1016/j.jss.2019.04.038] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/07/2018] [Revised: 03/26/2019] [Accepted: 04/09/2019] [Indexed: 02/07/2023]
Abstract
BACKGROUND Inflammatory bowel disease encompasses relapsing gastrointestinal disorders commonly presenting in pediatric patients, with 25% of diagnoses made before age 20 and 4% before age 5. Considering the need for life-long surgical follow-up, a collaborative system involving both pediatric and colorectal surgeons could improve overall patient experiences. We hypothesized that cases performed in collaboration with both pediatric and adult colorectal surgeons may lead to better outcomes. METHODS Data were gathered retrospectively for 116 patients 18 y old or younger who underwent colorectal resections for inflammatory bowel disease between 2010 and 2017 at our institution. Data included patient demographics, type of procedure, surgical approach, specimen extraction site, surgeon involvement (pediatric, colorectal, or collaborative), operative time, and estimated blood loss. We analyzed days until passage of flatus and bowel movement, length of stay, type of surgical procedure, and surgical complications. RESULTS Our data showed that days until flatus (2.27 ± 0.47, P = 0.049), first bowel movement (2.64 ± 0.67, P = 0.006), and length of stay (4.45 ± 1.51, P = 0.006) were the shortest in the collaborative group. We also found that single-incision laparoscopic surgery was significantly more common in the collaborative group (77.8%, P = 0.002). We did not see a difference in surgical complication rates among any of the groups. CONCLUSIONS Our study showed short-term beneficial outcomes in a single institution associated with the collaboration of pediatric surgeons and colorectal surgeons on pediatric colorectal cases in comparison to those performed by pediatric surgeons or adult colorectal surgeons alone.
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Affiliation(s)
- Courtney Pisano
- Department of Pediatric Surgery, Nationwide Children's Hospital 700 Children's Drive, Columbus, Ohio
| | - Ipek Sapci
- Department of Colorectal Surgery, The Cleveland Clinic Foundation, Cleveland, Ohio
| | - Paul A Karam
- Department of General Surgery, The Cleveland Clinic Foundation, Cleveland, Ohio
| | - Anthony L DeRoss
- Department of Pediatric Surgery, The Cleveland Clinic Foundation, Cleveland, Ohio.
| | - Meagan M Costedio
- Department of Colorectal Surgery, University Hospitals, Cleveland, OH
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Otto C, Tárnok A, Erős A, Szakács Z, Vincze Á, Farkas N, Sarlós P. Planned Transition of Adolescent Patients with Inflammatory Bowel Disease Results in Higher Remission Rates. J Pediatr Nurs 2019; 45:62-66. [PMID: 30745207 DOI: 10.1016/j.pedn.2019.02.003] [Citation(s) in RCA: 15] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/24/2018] [Revised: 01/09/2019] [Accepted: 02/01/2019] [Indexed: 02/07/2023]
Abstract
PURPOSE To evaluate the effect of our current transition process on clinical outcomes in adolescent patients with inflammatory bowel diseases (IBD). DESIGN AND METHODS Two groups of patients with IBD diagnosed in pediatric care were compared retrospectively: Group A patients did not attend the transition process, while Group B patients entered the planned transition service. Outcomes at 1-year after transfer to adult care were evaluated. RESULTS Forty-five patients with IBD diagnosed under the age of 18 years were identified of whom 35 had Crohn's disease and 10 had ulcerative colitis. Twenty-four patients were in Group A (without transition), and 21 patients in Group B (with at least one planned transition visit). Mean age at diagnosis was 15.1 ± 2.2 and 13.7 ± 3.0 years (p = 0.086), respectively. There were no significant differences in disease duration before transfer, Montreal classification at diagnosis, body mass index, anti-TNF therapy usage, and disease status at transfer between the two groups. A significantly higher number of Group B patients were in remission at 12 months after transfer when compared to patients in Group A (11 vs. 18, respectively, p = 0.037). There was a significant difference between groups regarding the number of scheduled visits within the examined period (9 vs. 16, p = 0.011, respectively). CONCLUSIONS Planned transition visits resulted in higher disease remission rate at 1-year follow-up after transfer from pediatric to adult health care system in adolescent patients with IBD. PRACTICE IMPLICATION Well-established transition programs in IBD are needed.
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Affiliation(s)
- Caroline Otto
- Division of Gastroenterology, First Department of Medicine, Medical School, University of Pécs, Pécs, Hungary
| | - András Tárnok
- Department of Pediatrics, Medical School, University of Pécs, Pécs, Hungary
| | - Adrienn Erős
- Institute for Translational Medicine, Medical School, University of Pécs, Pécs, Hungary
| | - Zsolt Szakács
- Institute for Translational Medicine, Medical School, University of Pécs, Pécs, Hungary
| | - Áron Vincze
- Division of Gastroenterology, First Department of Medicine, Medical School, University of Pécs, Pécs, Hungary
| | - Nelli Farkas
- Institute of Bioanalysis, Medical School, University of Pécs, Pécs, Hungary
| | - Patricia Sarlós
- Division of Gastroenterology, First Department of Medicine, Medical School, University of Pécs, Pécs, Hungary.
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25
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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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26
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Karim S, Porter JA, McCombie A, Gearry RB, Day AS. Transition clinics: an observational study of themes important to young people with inflammatory bowel disease. Transl Pediatr 2019; 8:83-89. [PMID: 30881902 PMCID: PMC6382499 DOI: 10.21037/tp.2019.01.04] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/14/2023] Open
Abstract
BACKGROUND Transition from paediatric to adult services can be stressful and potentially disruptive for adolescents diagnosed with inflammatory bowel disease (IBD). This study aimed to ascertain transition-related factors relevant to young people in New Zealand. METHODS Adolescents diagnosed with IBD prior to their 16th birthday were asked to participate in focus groups to generate transition-related themes. These themes were used to develop a questionnaire, which was then administered to a second group of young patients. RESULTS Initial focus groups discussions generated several key themes: these included concerns about meeting new people in unfamiliar surroundings, the importance of shared clinics and assessments for transition readiness. The subsequent transition questionnaire was completed by 53 young people (28 female and 48 with Crohn's disease). The most commonly reported difficulty by those entering transition was meeting a new doctor. This and building a new relationship/trust were the main concerns of respondents who were preparing for or within a transition process. Parental assessment of illness and readiness to transition were not thought to be as important as other factors for determining readiness for transition. The character of their new adult gastroenterologist was the factor felt most likely to make transition easy. CONCLUSIONS The main concerns of these young patients with IBD, at various stages of transition, were about meeting a new team and building new relationships. Planning and conducting a structured transition process should consider these factors to optimise the process.
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Affiliation(s)
- Shwan Karim
- Department of Gastroenterology, Canterbury District Health Board, Cashmere, New Zealand
| | - Jody A Porter
- Department of Paediatrics, Canterbury District Health Board, Cashmere, New Zealand.,Department of Paediatrics, University of Otago Christchurch, Christchurch, New Zealand
| | - Andrew McCombie
- Department of Medicine, University of Otago Christchurch, Christchurch, New Zealand
| | - Richard B Gearry
- Department of Gastroenterology, Canterbury District Health Board, Cashmere, New Zealand.,Department of Medicine, University of Otago Christchurch, Christchurch, New Zealand
| | - Andrew S Day
- Department of Paediatrics, Canterbury District Health Board, Cashmere, New Zealand.,Department of Paediatrics, University of Otago Christchurch, Christchurch, New Zealand
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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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28
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White PH, Cooley WC, Boudreau ADA, Cyr M, Davis BE, Dreyfus DE, Forlenza E, Friedland A, Greenlee C, Mann M, McManus M, Meleis AI, Pickler L. Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics 2018; 142:peds.2018-2587. [PMID: 30348754 DOI: 10.1542/peds.2018-2587] [Citation(s) in RCA: 500] [Impact Index Per Article: 71.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/24/2022] Open
Abstract
Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, "Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home," are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults. It also includes new and updated sections on definition and guiding principles, the status of health care transition preparation among youth, barriers, outcome evidence, recommended health care transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. The clinical report also includes new recommendations pertaining to infrastructure, education and training, payment, and research.
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Affiliation(s)
- Patience H. White
- Got Transition/The National Alliance to Advance Adolescent Health and Department of Medicine and Pediatrics, School of Medicine and Health Sciences, George Washington University, Washington, District of Columbia; and
| | - W. Carl Cooley
- Department of Pediatrics, Geisel School of Medicine, Dartmouth College, Hanover, New Hampshire
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29
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Gumidyala AP, Greenley RN, Plevinsky JM, Poulopoulos N, Cabrera J, Lerner D, Noe JD, Walkiewicz D, Werlin S, Kahn SA. Moving On: Transition Readiness in Adolescents and Young Adults With IBD. Inflamm Bowel Dis 2018; 24:482-489. [PMID: 29462383 DOI: 10.1093/ibd/izx051] [Citation(s) in RCA: 34] [Impact Index Per Article: 4.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/23/2017] [Indexed: 12/09/2022]
Abstract
BACKGROUND Inflammatory bowel diseases (IBD) often begins early in life. Adolescents and young adults (AYA) with IBD have to acquire behaviors that support self-care, effective healthcare decision-making, and self-advocacy to successfully transition from pediatric to adult health care. Despite the importance of this critical time period, limited empirical study of factors associated with transition readiness in AYA exists. This study aimed to describe transition readiness in a sample of AYA with IBD and identify associated modifiable and nonmodifiable factors. METHODS Seventy-five AYA (ages 16-20) and their parents participated. AYA and parents reported on demographics, patient-provider transition-related communication, and transition readiness. AYA self-reported on disease self-efficacy. Disease information was abstracted from the medical record. RESULTS Deficits in AYA responsibility were found in knowledge of insurance coverage, scheduling appointments, and ordering medication refills. Older AYA age, higher AYA disease-management self-efficacy, and increased patient-provider transition communication were each associated with higher overall transition readiness and AYA responsibility scores. Regression analyses revealed that older AYA age and increased patient-provider transition-related communication were the most salient predictors of AYA responsibility for disease management and overall transition readiness across parent and AYA reports. CONCLUSIONS AYA with IBD show deficits in responsibility for their disease management that have the potential to affect their self-management skills. Findings suggest provider communication is particularly important in promoting transition readiness. Additionally, it may be beneficial to wait to transition patients until they are older to allow them more time to master skills necessary to responsibly manage their own healthcare.
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Affiliation(s)
| | - Rachel N Greenley
- Department of Psychology, Rosalind Franklin University of Medicine and Science, North Chicago, IL
| | - Jill M Plevinsky
- Department of Psychology, Rosalind Franklin University of Medicine and Science, North Chicago, IL
| | - Natasha Poulopoulos
- Department of Psychology, Rosalind Franklin University of Medicine and Science, North Chicago, IL
| | - Jose Cabrera
- Gastroenterology, Liver and Nutrition Program, Children's Hospital of Wisconsin, Milwaukee, WI
| | - Diana Lerner
- Gastroenterology, Liver and Nutrition Program, Children's Hospital of Wisconsin, Milwaukee, WI
| | - Joshua D Noe
- Gastroenterology, Liver and Nutrition Program, Children's Hospital of Wisconsin, Milwaukee, WI
| | - Dorota Walkiewicz
- Department of Pediatric Gastroenterology, UW Health, American Family Children's Hospital, Madison, WI
| | - Steven Werlin
- Gastroenterology, Liver and Nutrition Program, Children's Hospital of Wisconsin, Milwaukee, WI
| | - Stacy A Kahn
- Inflammatory Bowel Disease Center, Boston's Children's Hospital, Boston, MA
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30
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Assessing the Transition Intervention Needs of Young Adults With Inflammatory Bowel Diseases. J Pediatr Gastroenterol Nutr 2018; 66:281-285. [PMID: 28753177 DOI: 10.1097/mpg.0000000000001677] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Abstract
OBJECTIVES The transition of inflammatory bowel disease (IBD) patients from pediatric to adult care can be challenging. Developing an effective transition intervention requires assessing the current transition experience for potential improvements, determining preferred content and format, and assessing patients' transition skills. METHODS This mixed-methods study of 20 transitioned IBD patients (ages 17-20 years) used semistructured interviews and validated assessments of self-management/self-advocacy and IBD knowledge. Interviews were analyzed thematically. Assessment scores were compared with published reference data by estimating proportion or mean differences and 95% confidence intervals (CIs). RESULTS The concept of a transition intervention was well-received by participants. Preferred content centered on medications, disease and what to expect. Preferred ways to acquire knowledge were one-on-one instruction, handouts, and websites. Identified themes were "individualized and multifaceted," "teach about transition," and "support the shift in responsibility." Among participants, 95% did not achieve 90% mastery of transition skills (0.6% higher [95% CI -10.7% to 9.5%] than the reference estimate) and the mean knowledge score was 15.15 (3.86 [95% CI 2.27 to 5.45] points higher than the reference estimate). CONCLUSIONS We have identified preferred intervention formats and content as well as skill areas to target for improvement. As a result of this work, we will design a website intervention pertaining to identified themes.
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31
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Hart LC, Maslow G. The Medical Transition from Pediatric to Adult-Oriented Care: Considerations for Child and Adolescent Psychiatrists. Child Adolesc Psychiatr Clin N Am 2018; 27:125-132. [PMID: 29157498 DOI: 10.1016/j.chc.2017.08.004] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
Abstract
More adolescents and young adults are surviving previously fatal childhood illness and need support to transition from pediatric care to adult-oriented care. There are many barriers, but guidelines and tools assist providers with emphasis on gradually addressing transition with patients and families. Child and adolescent psychiatrists should be particularly attuned to the needs of adolescents with previously identified mental illness who are at high risk of falling out of regular care during transition. Providers are also uniquely suited to address the needs of adolescents and young adults with intellectual and developmental disabilities.
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Affiliation(s)
- Laura C Hart
- Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, 725 Martin Luther King Jr. Boulevard, Chapel Hill, NC, 27514, USA
| | - Gary Maslow
- Psychiatry and Behavioral Sciences, Duke University School of Medicine, Durham, NC, USA.
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Validation of a Self-efficacy Scale for Adolescents and Young Adults With Inflammatory Bowel Disease. J Pediatr Gastroenterol Nutr 2017; 65:546-550. [PMID: 28248793 DOI: 10.1097/mpg.0000000000001552] [Citation(s) in RCA: 22] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Abstract
Self-efficacy (SE) is a strong predictor of health outcomes in chronic diseases. The aim of the study was to develop a valid and reliable SE scale for adolescents and young adults with inflammatory bowel disease (IBD). Participants with IBD, 12 to 25 years' old, were recruited via outpatient gastroenterology clinics and online to provide demographic and clinical information and to complete psychosocial questionnaires. Reliability statistics, principle components factor analysis, and Pearson correlations with psychosocial variables assessed the psychometric properties of the IBD Self-efficacy Scale for Adolescents and Young Adults (IBDSES-A). A total of 95 participants completed the study. Internal consistency and split-half reliability of the IBDSES-A fell above the acceptable standard cutoff. Principle components factor analysis yielded 3 potential subscales. Test-retest reliability was excellent. Construct validity is supported by significant positive correlations with self-esteem and health-related quality of life, and negative correlations with depression and anxiety. IBDSES-A, a 13-item disease-specific scale to assess SE toward disease management, demonstrates good reliability and construct validity and could be a useful tool in understanding the role of SE in pediatric IBD self-management and outcomes.
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33
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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: 57] [Impact Index Per Article: 7.1] [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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Strohl M, Zhang X, Lévesque D, Bessissow T. Transition care in inflammatory bowel disease: A needs assessment survey of Quebec gastroenterologists and allied nurses. World J Gastrointest Pharmacol Ther 2017; 8:186-192. [PMID: 28828197 PMCID: PMC5547377 DOI: 10.4292/wjgpt.v8.i3.186] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/17/2017] [Revised: 03/28/2017] [Accepted: 05/09/2017] [Indexed: 02/06/2023] Open
Abstract
AIM To determine the tools needed and problems encountered during the transition of inflammatory bowel disease (IBD) patients from pediatric to adult gastroenterologists (GIs) in Québec, Canada.
METHODS We conducted a needs assessment survey of Quebec health care professionals (HCPs). The survey was handed out to 136 Québec HCPs at a local conference in 2013. Additionally, it was emailed to any other HCPs in Quebec involved in caring for IBD patients. The completed surveys were compiled to derive descriptive data. Further specific subgroup analysis was then conducted.
RESULTS Among the conference attendees and individuals emailed 77 (28.2%) completed the questionnaire. Respondents included adult GIs (61.3%), pediatric GIs (20.8%) and IBD nurses (18.3%). The majority of respondents believed that a standardized structure is important for a successful transition. Adult and pediatric GIs equally felt that patients were inadequately prepared for the transition (P = 0.6). There were significant differences between adult and pediatric GIs when it came to resource availability (55.6% vs 90.9%, P = 0.002) and perceived need of a formal transition clinic (21.7% vs 68.8%, P = 0.0006). Both transition program and medical summaries were identified as the most valuable tools to improve transition.
CONCLUSION As described in previous studies, our survey reinforces the importance of a transition program, education for young adult IBD patients and the need to improve communication between adult and pediatric GIs.
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Hakizimana A, Ahmed I, Russell R, Wright M, Afzal NA. Challenges of modern day transition care in inflammatory bowel disease: From inflammatory bowel disease to biosimilars. World J Gastroenterol 2017; 23:4473-4479. [PMID: 28740335 PMCID: PMC5504362 DOI: 10.3748/wjg.v23.i25.4473] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/29/2017] [Revised: 04/03/2017] [Accepted: 05/09/2017] [Indexed: 02/06/2023] Open
Abstract
In this article we discuss the challenges of delivering a high quality Transition care. A good understanding of the adolescent needs with good communication between Transition care physicians and the patient is essential for good continuity of care. Despite availability of several guidelines, one model doesn’t fit all and any transition service development should be determined by the local need and available healthcare facilities.
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Insurance Among Young Adults With Inflammatory Bowel Disease: Changes Under the Affordable Care Act Dependent Provision. J Pediatr Gastroenterol Nutr 2017; 64:962-965. [PMID: 27513697 DOI: 10.1097/mpg.0000000000001378] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/07/2023]
Abstract
BACKGROUND A total of 20% to 30% of patients with inflammatory bowel disease (IBD) present before age 18 years, eventually requiring transfer to adult care. Vulnerability during transfer may be exacerbated by loss of insurance. A provision of the Affordable Care Act (ACA) allows young adults (YAs) to remain on parental private insurance through age 25 years. There has been a decrease in uninsured YAs since its implementation in 2010. Little is known about whether insurance coverage of YAs with IBD has been affected. OBJECTIVE The aim of the present study was to determine whether the proportion of uninsured YAs with IBD has changed following the implementation of extended dependent eligibility under the ACA. METHODS We conducted a cross-sectional analysis of hospitalized patients with IBD, identified in the Nationwide Inpatient Sample (NIS) using diagnostic codes, to estimate proportions of insurance coverage during the years 2006-2013. We compared 19 to 25 year olds to 2 to 18 and 26 to 35 year olds, unaffected by the provision, to account for underlying trends. RESULTS From 2006 to 2010, 19 to 25 year olds had the highest proportion of uninsured, peaking at 14.1% in 2010. In 2011, the proportion decreased to 10.1%, below the proportion of uninsured 26 to 35 year olds (13.1%), remaining in this range through 2013. Private coverage increased in 2011 for 19 to 25 year olds, remaining stable for 26 to 35 year olds. DISCUSSION Previous research cited 5% uninsured among all hospitalized patients with IBD. Our study indicates a higher proportion for YAs, decreasing after the ACA. Lack of insurance increases vulnerability during transfer but may be modifiable through policy change. Furthermore, research should analyze the effects of Medicaid expansion and health care exchanges.
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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: 29] [Impact Index Per Article: 3.6] [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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Timmer A, Peplies J, Westphal M, Kaltz B, Ballauff A, Claßen M, Laass MW, Koletzko S. Transition from pediatric to adult medical care - A survey in young persons with inflammatory bowel disease. PLoS One 2017; 12:e0177757. [PMID: 28542322 PMCID: PMC5436761 DOI: 10.1371/journal.pone.0177757] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/01/2016] [Accepted: 05/03/2017] [Indexed: 12/18/2022] Open
Abstract
Background Transition to adult health services is a vulnerable phase in young persons with chronic disease. We describe how young persons with inflammatory bowel disease in Germany and Austria experience care during the transitional age, focusing on differences by type of provider (pediatric vs. adult specialist, no specialist). Methods This was a follow up survey in patients previously registered with a pediatric IBD registry. Patients aged 15 to 25 received a postal questionnaire, including a measure of health care experience and satisfaction. Descriptive analyses were stratified by age. Sub-analyses in the 18–20 year age group compared health care experience by type of provider. Determinants of early or late transfer were examined using multinomial logistic regression. Results 619 patients responded to the survey; 605 questionnaires were available for analysis. Usual age of completing transition was 18. Earlier transfer was more common with low parental SES (OR 1.8, 95% CI 0.7 to 4.6), and less common with advanced schooling (OR 0.5, 95% CI 0.2 to 1.2). Structured transition was uncommon. 48% of the respondents had not received any preceding transition advice. Overall satisfaction with IBD care was high, especially with respect to interpersonal aspects, but less so in aspects of continuity of care. Conclusions Despite high overall patient satisfaction, relevant deficiencies in transitional care were documented. Some of these were associated with lower parental social status. Differences in health care satisfaction by type of provider (adult vs. pediatric) were small.
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Affiliation(s)
- Antje Timmer
- Division of Epidemiology and Biometry, Department of Health Services Research, Medical Faculty, Carl von Ossietzky University, Oldenburg, Germany
- Department of Clinical Epidemiology, Leibniz Institute for Prevention Research and Epidemiology – BIPS GmbH, Bremen, Germany
- * E-mail:
| | - Jenny Peplies
- Department of Clinical Epidemiology, Leibniz Institute for Prevention Research and Epidemiology – BIPS GmbH, Bremen, Germany
- Institute for Public Health & Nursing Research IPP, Faculty of Human and Health Sciences, Bremen, Germany
| | - Max Westphal
- Department of Clinical Epidemiology, Leibniz Institute for Prevention Research and Epidemiology – BIPS GmbH, Bremen, Germany
| | - Birgit Kaltz
- German Crohn’s Disease and Ulcerative Colitis association (registered association), Berlin, Germany
| | - Antje Ballauff
- Center for Children’s and Adolescent Medicine, Krefeld, Germany
| | - Martin Claßen
- Childrens Hospital, Klinikum “Links der Weser“, Bremen, Germany
| | - Martin W. Laass
- Children’s Hospital, Medical Faculty Carl Gustav Carus, Technical University, Dresden, Germany
| | - Sibylle Koletzko
- Division of Pediatric Gastroenterology and Hepatology, Dr. von Hauner Children’s Hospital, Ludwig Maximilian University, Munich, Germany
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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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Al-Jahdali E, Mosli M, Saadah O. A cross-sectional survey of Saudi gastroenterologists: Transition strategies for adolescents with inflammatory bowel disease. Saudi J Gastroenterol 2017; 23:233-237. [PMID: 28721977 PMCID: PMC5539677 DOI: 10.4103/sjg.sjg_77_17] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/14/2023] Open
Abstract
BACKGROUND/AIMS The transition of adolescents with inflammatory bowel disease (IBD) from pediatric to adult care requires a well-structured standardized protocol to ensure the delivery of optimal healthcare and decrease the risk of nonadherence, hospitalizations, and complications. The aims of this survey are to evaluate current IBD transition practices adopted by gastroenterology services across the Kingdom of Saudi Arabia (KSA) and to identify the major challenges standing in the way of implementing effective transition strategies from the perspectives of pediatric and adult gastroenterologists. PATIENTS AND METHODS An online survey was distributed to KSA pediatric and adult gastroenterologists through the Kingdom's national gastroenterology association. The questionnaire included closed-ended questions regarding existing institutional transition strategies and perspectives regarding the impact of different factors on their ability to effectively transition adolescents from pediatric to adult care. RESULTS A total of 80 adult and pediatric gastroenterologists responded to the survey invitation. Most of the participating gastroenterologists worked at a tertiary care center (82.5%). The majority of gastroenterologist (73.8%) reported that they do not follow a defined protocol for transitioning in their current practices. However, a structured transition program was noted to be "very important" by 78.8% of gastroenterologists. The most favored method of transitioning was joint outpatient clinic attended by patient, caregiver, pediatric gastroenterologist, and adult gastroenterologist (35.9%) and the most commonly reported barrier to transitioning was "lack of proper preparation" for transitioning (53.2%). CONCLUSIONS Although acknowledged by the majority of participants as being "very important," no standardized IBD transition protocol is followed in the majority of practices across KSA. A well-structured national protocol for transitioning adolescents with IBD is needed.
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Affiliation(s)
- Elaf Al-Jahdali
- Department of Medicine, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia
| | - Mahmoud Mosli
- Department of Medicine, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia,Address for correspondence: Dr. Mahmoud Mosli, Department of Medicine, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia. E-mail:
| | - Omar Saadah
- Department of Paediatrics, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia
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What Teens Do Not Know Can Hurt Them: An Assessment of Disease Knowledge in Adolescents and Young Adults with IBD. Inflamm Bowel Dis 2017; 23:89-96. [PMID: 28002128 DOI: 10.1097/mib.0000000000000974] [Citation(s) in RCA: 19] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/15/2022]
Abstract
BACKGROUND Although adequate disease-related knowledge is recognized as an important component of transition readiness, little empirical attention has been directed toward understanding the levels of disease knowledge of adolescents and young adults (AYAs) with inflammatory bowel diseases (IBDs) or factors associated with higher levels of knowledge. This study described disease knowledge in a sample of AYAs with IBDs and examined individual, family, and patient-provider relationship factors associated with higher knowledge. METHODS Seventy-five AYAs (ages 16-20) and their parents participated. AYAs and parents reported on demographics, parent autonomy granting behaviors, health care satisfaction, patient-provider transition-related communication, and disease knowledge. AYAs self-reported on disease self-efficacy. Disease information was abstracted from the medical record. RESULTS On average, AYAs answered 8.20 (SD = 1.75) of 12 knowledge questions correctly. Over 85% of AYAs correctly identified their type of IBD, number and type of IBD-related surgeries, and name of their current IBD medical provider. In contrast, knowledge about frequency of medication refills, effects of drugs and alcohol on IBD, and number to call to schedule medical appointments was suboptimal (i.e., 50% or fewer provided a correct response). Older AYA age, greater AYA health care satisfaction, higher AYA self-efficacy, and more frequent patient-provider transition-related communication were each associated with higher IBD-related knowledge. CONCLUSIONS To promote disease knowledge, providers should foster AYA self-efficacy by encouraging age-appropriate involvement in IBD management and make discussion of transition-related issues a priority during clinical appointments. Moreover, fostering collaborative and positive relationships with patients will improve satisfaction and may also enhance knowledge.
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Are Expectations Too High for Transitioning Adolescents With Inflammatory Bowel Disease? Examining Adult Medication Knowledge and Self-Management Skills. J Pediatr Gastroenterol Nutr 2016; 63:494-499. [PMID: 27280748 PMCID: PMC5331613 DOI: 10.1097/mpg.0000000000001299] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/17/2022]
Abstract
OBJECTIVE Transition readiness assessment has focused attention on adolescent knowledge and skills, but data-driven benchmarks have not been established. METHODS Patients with inflammatory bowel disease (IBD), ages 25 to 50 years, attending an outpatient gastroenterology clinic, were recruited to complete a voluntary, confidential survey asking patients to recall medications and potential side effects, and to rate their degree of independence performing health maintenance tasks. RESULTS The 141 respondents (48% response rate) had mean age of 36 years with median disease duration of 11 years. They were 60% female, 54% had Crohn disease, and 23% were diagnosed before age 18. Nearly all patients were fully independent answering doctor's questions during the visit (93%) and scheduling office visits (92%). Excluding pharmacy pick up, full independence seen in only 57%, whereas 16% significantly delegated tasks. No differences by sex, disease type, medication class, age at disease onset, or disease duration were found across levels of self-management. Almost all (97%) respondents could recall medication name, whereas fewer were able to recall dose (63%) or frequency (65%). Side effect knowledge was poor; among 81 patients on a biologic or immunomodulator, only 17 (21%) cited cancer and 22 (27%) cited infection. CONCLUSIONS Adolescent IBD transition programs now have empirical data from the present study about adult benchmarks for independence in self-management skills. Further research can establish which skills correlate with medication adherence and active collaboration with the medical team. The present study also exposes important gaps in medication risk knowledge and may allow improved patient education for subgroups of adult patients with IBD.
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Clarke T, Lusher J. Transitioning patients with inflammatory bowel disease (IBD) from adolescent to adult services: a systematic review. Frontline Gastroenterol 2016; 7:264-270. [PMID: 28839867 PMCID: PMC5369483 DOI: 10.1136/flgastro-2015-100575] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/04/2015] [Revised: 05/27/2015] [Accepted: 06/04/2015] [Indexed: 02/04/2023] Open
Abstract
Approximately a quarter of patients with inflammatory bowel disease (IBD) are diagnosed before 20 years of age, presenting with more extensive distribution and severity of disease than adult onset. The purpose of this review was to determine facilitators of, and barriers to, successful transition of patients with IBD from adolescent to adult services. A systematic review of IBD transition research was conducted in March 2014 searching PubMed, MEDLINE, PsycINFO, Web of Science and the Cochrane Database of Systematic Reviews databases. A hand search of reference lists and narrative reviews was carried out to maximise the potential for retrieving all relevant manuscripts. Primary studies written in English of full-length peer-reviewed journal articles that investigated transition of paediatric patients with IBD to adult services were included. Studies were excluded if the primary focus was not IBD. The search produced 283 potentially relevant studies. After removing duplicates and screening for suitability, six met our inclusion criteria. Barriers to transition included system inadequacies and a lack of resources, clinical time and training. Successful transition involved joint medical visits, structured transition services, improved communication between paediatric and adult services and improved education for patients and staff. If the transition process for adolescents suffering with IBD is to improve then it is vital that more research is conducted to better our understanding of ways in which we can ensure that defined protocols are in place for a smooth transition for every adolescent, leading to improved standards and minimal disruption to care.
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Affiliation(s)
- Tilean Clarke
- School of Psychology, Faculty of Life Sciences and Computing, London Metropolitan University, London, UK
| | - Joanne Lusher
- School of Psychology, Faculty of Life Sciences and Computing, London Metropolitan University, London, UK
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Trivedi I, Holl JL, Hanauer S, Keefer L. Integrating Adolescents and Young Adults into Adult-Centered Care for IBD. Curr Gastroenterol Rep 2016; 18:21. [PMID: 27086002 DOI: 10.1007/s11894-016-0495-z] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/05/2023]
Abstract
Planned healthcare transition, initiated in pediatric care, is a gradual process aimed at fostering the adolescent patient's disease knowledge and skills with the ultimate objective of preparing patients and families for adult-centered care. The process is critical in inflammatory bowel diseases (IBD) where there is an increased risk of non-adherence, hospitalizations, and emergency department use as young adult patients graduate from pediatric to adult-centered care. While evidence for healthcare transition in IBD is mounting, important gaps remain in the understanding of this process from the perspective of the adult gastroenterologist. This paper summarizes what is known about healthcare transition in IBD and explores the unanswered questions-a conceptual and methodological framework for transition interventions, relevant outcomes that define successful transition, and key stakeholder perspectives. For the adult gastroenterologist managing the young adult patient population, this paper presents the paradigm of "care integration"-a process of ongoing, multi-modality support for the patient, initiated in the adult care setting, with the goal of improving self-management skills and active participation in medical decision-making.
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Affiliation(s)
- Itishree Trivedi
- Division of Gastroenterology and Hepatology, Department of Medicine, Feinberg School of Medicine, Northwestern University, 676 N. St Clair, Suite 1400, Chicago, IL, 60611, USA.
- Center for Healthcare Studies, Institute for Public Health and Medicine, Feinberg School of Medicine, Northwestern University, 633 N. St. Clair Street (20th floor), Chicago, IL, 60611, USA.
| | - Jane L Holl
- Center for Healthcare Studies, Institute for Public Health and Medicine, Feinberg School of Medicine, Northwestern University, 633 N. St. Clair Street (20th floor), Chicago, IL, 60611, USA
- Department of Pediatrics, Feinberg School of Medicine, Northwestern University, 225 E. Chicago Avenue #86, Chicago, 60611, IL, USA
| | - Stephen Hanauer
- Division of Gastroenterology and Hepatology, Department of Medicine, Feinberg School of Medicine, Northwestern University, 676 N. St Clair, Suite 1400, Chicago, IL, 60611, USA
| | - Laurie Keefer
- Division of Gastroenterology, Department of Medicine, Icahn School of Medicine at Mount Sinai, 17 East 102nd Street - 5th Floor, New York, 10029, NY, USA
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Transition of Inflammatory Bowel Disease Care: Assessment of Transition Readiness Factors and Disease Outcomes in a Young Adult Population. Inflamm Bowel Dis 2016; 22:702-8. [PMID: 26841222 DOI: 10.1097/mib.0000000000000633] [Citation(s) in RCA: 20] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
BACKGROUND Limited data exist on what factors impact transition readiness and how readiness impacts short-term disease outcomes. METHODS Patients between the ages of 18 and 25 with an established inflammatory bowel disease diagnosis completed questionnaires at the time of an outpatient visit in the pediatric or adult setting, which included the Transition Readiness Assessment Questionnaire (TRAQ). After 6 months, electronic medical records were reviewed. RESULTS A total of 95 patients were enrolled, 46 in the adult care setting and 49 in the pediatric care setting. Patients in the adult setting had a significantly higher overall TRAQ score compared with the pediatric setting (median: 4.42 [IQR: 3.9-4.6] versus 4.06 [IQR: 3.4-4.4], P < 0.001). Logistic regression analysis demonstrated that age was independently associated with higher TRAQ scores (odds ratio: 1.49; 95 confidence interval%, 1.1-2.02). Nonadherent patients scored lower on the Managing Medications subscale (median: 4.25 [IQR: 3.3-4.8] versus 4.75 [IQR: 4.3-5.0], P < 0.01). Logistic regression showed that patients who scored <4.75 on the Medication Management subscale were 3.8 times more likely to be nonadherent than patients who scored ≥4.75 (95% confidence interval, 1.4-10.3). This remained significant after adjusting for gender and age. During the 6-month follow-up period, 9/95 patients (10%) had hospitalizations or ED visits related to inflammatory bowel disease. There were no associations between TRAQ scores and hospitalizations/ED visits. CONCLUSIONS Age is the primary factor that drives transition readiness. Our findings suggest that administering the medication management portion of the TRAQ can be used to identify patients at risk for nonadherence. Follow-up studies are needed to determine how readiness impacts long-term disease outcomes.
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Bennett AL, Moore D, Bampton PA, Bryant RV, Andrews JM. Outcomes and patients’ perspectives of transition from paediatric to adult care in inflammatory bowel disease. World J Gastroenterol 2016; 22:2611-2620. [PMID: 26937149 PMCID: PMC4768207 DOI: 10.3748/wjg.v22.i8.2611] [Citation(s) in RCA: 33] [Impact Index Per Article: 3.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/28/2015] [Revised: 11/30/2015] [Accepted: 12/14/2015] [Indexed: 02/06/2023] Open
Abstract
AIM: To describe the disease and psychosocial outcomes of an inflammatory bowel disease (IBD) transition cohort and their perspectives.
METHODS: Patients with IBD, aged > 18 years, who had moved from paediatric to adult care within 10 years were identified through IBD databases at three tertiary hospitals. Participants were surveyed regarding demographic and disease specific data and their perspectives on the transition process. Survey response data were compared to contemporaneously recorded information in paediatric service case notes. Data were compared to a similar age cohort who had never received paediatric IBD care and therefore who had not undergone a transition process.
RESULTS: There were 81 returned surveys from 46 transition and 35 non-transition patients. No statistically significant differences were found in disease burden, disease outcomes or adult roles and responsibilities between cohorts. Despite a high prevalence of mood disturbance (35%), there was a very low usage (5%) of psychological services in both cohorts. In the transition cohort, knowledge of their transition plan was reported by only 25/46 patients and the majority (54%) felt they were not strongly prepared. A high rate (78%) of discussion about work/study plans was recorded prior to transition, but a near complete absence of discussion regarding sex (8%), and other adult issues was recorded. Both cohorts agreed that their preferred method of future transition practices (of the options offered) was a shared clinic appointment with all key stakeholders.
CONCLUSION: Transition did not appear to adversely affect disease or psychosocial outcomes. Current transition care processes could be optimised, with better psychosocial preparation and agreed transition plans.
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The Emerging Adult with Inflammatory Bowel Disease: Challenges and Recommendations for the Adult Gastroenterologist. Gastroenterol Res Pract 2015; 2015:260807. [PMID: 26064089 PMCID: PMC4434201 DOI: 10.1155/2015/260807] [Citation(s) in RCA: 30] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/31/2014] [Revised: 03/25/2015] [Accepted: 04/16/2015] [Indexed: 12/12/2022] Open
Abstract
Incidence of pediatric inflammatory bowel disease (IBD) is rising. Adult gastroenterologists are seeing increasing numbers of young adults with IBD, a subpopulation with unique needs and challenges that can impair their readiness to thrive in an adult healthcare system. Most adult gastroenterologists might not have the training or resources to address these needs. “Emerging adulthood” is a useful developmental lens through which this group can be studied. With complex disease phenotype and specific concerns of medication side effects and reproductive health, compounded by challenges of geographical and social flux and lack of adequate health insurance, emerging adults with IBD (EAI) are at risk of disrupted care with lack of continuity. Lessons learned from structured healthcare transition process from pediatric to adult services can be applied towards challenges in ongoing care of this population in the adult healthcare system. This paper provides an overview of the challenges in caring for the post transition EAI from the perspective of adult gastroenterologists and offers a checklist of provider and patient skills that enable effective care. This paper discusses the system-based challenges in care provision and search for meaningful patient-oriented outcomes and presents a conceptual model of determinants of continuity of care in this unique population.
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