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Peng K, Zhu P, Gu X, Hu C, Teng Y, Gu Z. Listening to the voices of adolescents with inflammatory bowel disease after returning to school: a qualitative study. Arch Dis Child 2025:archdischild-2024-328010. [PMID: 39880591 DOI: 10.1136/archdischild-2024-328010] [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: 09/16/2024] [Accepted: 01/22/2025] [Indexed: 01/31/2025]
Abstract
BACKGROUND The prevalence of inflammatory bowel disease (IBD) among Chinese adolescents has continued to increase in recent years. Adolescents with IBD interrupted their schooling due to the diagnosis and treatment of the disease. And when the condition stabilises, they will return to school. However, as a lifelong and recurrent disease, the instability of the disease after returning to school affects normal school participation. OBJECTIVE This study aims to explore the psychological and life challenges of adolescents with IBD in the complex and intertwined situations of disease management, adolescent development and school social interactions. METHODS A qualitative descriptive study was conducted. Qualitative data were collected from adolescents aged 11-19 (n=21; 7 males and 14 females) through in-depth, semistructured interviews. Reflexive thematic analysis was employed to ensure rigour. RESULTS The results highlight the challenges of returning to school for adolescents with IBD. There are three emerging themes and nine subthemes (in parentheses). (1) Problems of continued disease management (occasional uncontrollable flare-ups of symptoms, regular medical checkups disrupting daily school programming and shame from medication management). (2) Difficulties of impaired school functioning (difficulty keeping up with academic study and participating in high-intensity sports activities). (3) Challenges of maintaining friendship (burden of disease disclosure, difficulty in sharing food with friends, common topics of conversation decreasing and absence of group activities). CONCLUSION We call on medical institutions and schools to strengthen cooperation and further optimise support measures for this group through the intermediary role of school health clinics.
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Affiliation(s)
- Keyuan Peng
- School of Nursing, School of Public Health, Yangzhou University, Yangzhou, Jiangsu, People's Republic of China
| | - Pingting Zhu
- School of Nursing, School of Public Health, Yangzhou University, Yangzhou, Jiangsu, People's Republic of China
| | - Xinyue Gu
- School of Nursing, School of Public Health, Yangzhou University, Yangzhou, Jiangsu, People's Republic of China
| | - Chenglei Hu
- School of Nursing, School of Public Health, Yangzhou University, Yangzhou, Jiangsu, People's Republic of China
| | - Yi Teng
- School of Nursing, School of Public Health, Yangzhou University, Yangzhou, Jiangsu, People's Republic of China
| | - Zhie Gu
- Northern Jiangsu People's Hospital, Yangzhou, Jiangsu, People's Republic of China
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2
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Butt MF, Groen J, Jonker CAL, Burton-Murray H, Carrington EV, Chang L, Di Lorenzo C, Ellis J, Escher JC, Gorter RR, Jewell S, Karrento K, Koster EC, Nurko S, Rosen R, van Tilburg MA, Zarate-Lopez N, Corsetti M, Benninga MA. Pediatric to adult transition care in neurogastroenterology and motility: A position paper from the American Neurogastroenterology and Motility Society and European Society of Neurogastroenterology and Motility. Neurogastroenterol Motil 2024; 36:e14869. [PMID: 39038114 PMCID: PMC11486583 DOI: 10.1111/nmo.14869] [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: 04/26/2024] [Accepted: 07/02/2024] [Indexed: 07/24/2024]
Abstract
Transition services-programs that support adolescents and young adults (AYAs) as they move from a child-centered to a more autonomous, adult-orientated healthcare system-have been associated with improved short- and long-term healthcare outcomes. Unfortunately, there is a paucity of evidence exploring transition services within the neurogastroenterology and motility (NGM) field. The overall aim of this article, endorsed by the American Neurogastroenterology and Motility Society and European Society of Neurogastroenterology and Motility, is to promote a discussion about the role of transition services for patients with NGM disorders. The AYAs addressed herein are those who have: (a) a ROME positive disorder of gut-brain interaction (DGBI), (b) a primary or secondary motility disorder (including those with motility disorders that have been surgically managed), or (c) an artificial feeding requirement (parenteral or enteral tube feeding) to manage malnutrition secondary to categories (a) or (b). The issues explored in this position paper include the specific physical and psychological healthcare needs of patients with NGM disorders; key healthcare professionals who should form part of a secondary care NGM transition service; the triadic relationship between healthcare professionals, caregivers, and patients; approaches to selecting patients who may benefit most from transition care; methods to assess transition readiness; and strategies with which to facilitate transfer of care between healthcare professionals. Key areas for future research are also addressed, including the construction of NGM-specific transition readiness questionnaires, tools to assess post-transfer healthcare outcomes, and educational programs to train healthcare professionals about transition care in NGM.
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Affiliation(s)
- Mohsin F. Butt
- NIHR Nottingham BRC, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK. Nottingham Digestive Diseases Centre, Translational Medical Sciences, School of Medicine, University of Nottingham, Nottingham, UK
- Centre for Neuroscience, Trauma and Surgery, Wingate Institute of Neurogastroenterology, The Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, Whitechapel, London, UK
- Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota, USA
| | - Jip Groen
- Emma Children's Hospital-Amsterdam UMC, Location University of Amsterdam, Pediatric Gastroenterology, Amsterdam, The Netherlands
| | - Charlotte AL. Jonker
- Emma Children's Hospital-Amsterdam UMC, Location University of Amsterdam, Pediatric Gastroenterology, Amsterdam, The Netherlands
| | - Helen Burton-Murray
- Department of Psychiatry, Harvard Medical School, Boston, Massachusetts, USA
| | - Emma V. Carrington
- Department of Surgery and Cancer, Imperial College and Imperial College NHS Trust, London, UK
| | - Lin Chang
- G. Oppenheimer Center for Neurobiology of Stress at University of California, Los Angeles, Los Angeles, California; Vatche and Tamar Manoukian Division of Digestive Diseases, David Geffen School of Medicine at University of California, Los Angeles, Los Angeles, California
| | - Carlo Di Lorenzo
- Division of Gastroenterology, Hepatology, and Nutrition, Department of Pediatrics, Nationwide Children's Hospital, Columbus, OH, United States
| | - Jacob Ellis
- Department of Child and Adolescent Psychological Medicine, University College London Hospitals NHS Foundation Trust, London, UK
| | - Johanna C. Escher
- Department of Pediatric Gastroenterology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands
| | - Ramon R. Gorter
- Department of Pediatric Surgery, Emma Children's Hospital, Amsterdam UMC location University of Amsterdam, Amsterdam, The Netherlands
| | | | - Katja Karrento
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, United States
| | - Emma C. Koster
- Department of Internal Medicine, Division of Dietetics, Erasmus Medical Center, Rotterdam, The Netherlands
| | - Samuel Nurko
- Center for Motility and Functional Gastrointestinal Disorders, Division of Gastroenterology, Children's Hospital Boston, Boston, Massachusetts, USA
| | - Rachel Rosen
- Center for Motility and Functional Gastrointestinal Disorders, Division of Gastroenterology, Children's Hospital Boston, Boston, Massachusetts, USA
| | - Miranda A.L. van Tilburg
- Graduate Medical Education, Cape Fear Valley Health, Fayetteville, NC, USA
- Joan C Edwards School of Medicine, Marshall University, Huntington, WV, USA
- Department of Gastroenterology and Hepatology, University of North Carolina, Chapel Hill, NC, USA
- School of Social Work, University of Washington, Seattle, WA, USA
| | - Natalia Zarate-Lopez
- Department of Gastroenterology and Gastrointestinal Physiology, University College London Hospitals NHS Foundation Trust, London, UK
- Division of Surgery and Interventional Science, University College London, London, UK
| | - Maura Corsetti
- NIHR Nottingham BRC, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK. Nottingham Digestive Diseases Centre, Translational Medical Sciences, School of Medicine, University of Nottingham, Nottingham, UK
| | - Marc A. Benninga
- Emma Children's Hospital-Amsterdam UMC, Location University of Amsterdam, Pediatric Gastroenterology, Amsterdam, The Netherlands
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3
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Raffaele A, Ferlini CM, Fusi G, Lenti MV, Cereda E, Caimmi SME, Bertozzi M, Riccipetitoni G. Navigating the transition: a multidisciplinary approach to inflammatory bowel disease in children. Pediatr Surg Int 2024; 40:245. [PMID: 39192007 PMCID: PMC11349840 DOI: 10.1007/s00383-024-05789-8] [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] [Accepted: 07/12/2024] [Indexed: 08/29/2024]
Abstract
PURPOSE A multidisciplinary approach to Inflammatory Bowel Disease (IBD) has recently demonstrated a positive impact in pediatric patients, reducing dropout rates and facilitating the transition to adult care. Our study aims to evaluate how this approach influences disease activity, dropout rates, and transition. METHODS We conducted a longitudinal observational study including all patients diagnosed with IBD during pediatric-adolescent age, with a minimum follow-up period of 12 months. For each patient, endpoints included therapeutic approach, need for surgery and transition features. RESULTS We included 19 patients: 13 with Ulcerative Colitis (UC) and 6 with Crohn's disease (CD). Most patients required multiple lines of therapy, with over 50% in both groups receiving biological drugs. Compliance was good, with a single dropout in each group (10, 5%). The need for surgery was significantly higher in the CD group compared to the UC group (16% vs. 7.7%, p < 0.01). Mean age at transition was significantly higher in the UC group compared to the CD group (19.2 ± 0.7 years SD vs. 18.3 ± 0.6 years SD, p < 0.05). CONCLUSIONS In our experience, the multidisciplinary approach to IBD in transition-age patients appears effective in achieving clinical remission, offering the potential to reduce therapeutic dropouts.
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Affiliation(s)
- A Raffaele
- Department of Clinical, Surgical, Diagnostics and Pediatric Sciences, University of Pavia, Pavia, Italy
- Pediatric Surgery Unit, Department of Maternal and Child Health, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy
| | - C M Ferlini
- Pediatric Surgery Unit, Department of Maternal and Child Health, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy
| | - G Fusi
- Pediatric Surgery Unit, Department of Maternal and Child Health, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy
| | - M V Lenti
- Department of Internal Medicine, Fondazione IRCCS Policlinico San Matteo, University of Pavia, Pavia, Italy
- Department of Internal Medicine and Medical Therapeutics, University of Pavia, Pavia, Italy
| | - E Cereda
- Clinical Nutrition and Dietetics Unit, Department of Oncology and Hematology, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy
| | - S M E Caimmi
- Pediatrics Unit, Department of Maternal and Child Health, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy
| | - M Bertozzi
- Department of Clinical, Surgical, Diagnostics and Pediatric Sciences, University of Pavia, Pavia, Italy.
- Pediatric Surgery Unit, Department of Maternal and Child Health, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy.
| | - G Riccipetitoni
- Department of Clinical, Surgical, Diagnostics and Pediatric Sciences, University of Pavia, Pavia, Italy
- Pediatric Surgery Unit, Department of Maternal and Child Health, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy
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4
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Benítez JM, Suárez-Ferrer C, Calafat M, Bastón-Rey I. Paediatric to adult transition programme in inflammatory bowel disease, why do we need it? GASTROENTEROLOGIA Y HEPATOLOGIA 2024; 47:104-106. [PMID: 37977428 DOI: 10.1016/j.gastrohep.2023.11.001] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/05/2023] [Revised: 11/07/2023] [Accepted: 11/08/2023] [Indexed: 11/19/2023]
Affiliation(s)
- José Manuel Benítez
- Miembros del Grupo Joven de GETECCU (Grupo Español de Trabajo sobre Enfermedad de Crohn y Colitis Ulcerosa), España; Hospital Universitario Reina Sofía, IMIBIC, Córdoba, España.
| | - Cristina Suárez-Ferrer
- Miembros del Grupo Joven de GETECCU (Grupo Español de Trabajo sobre Enfermedad de Crohn y Colitis Ulcerosa), España; Hospital Universitario La Paz, Madrid, España
| | - Margalida Calafat
- Miembros del Grupo Joven de GETECCU (Grupo Español de Trabajo sobre Enfermedad de Crohn y Colitis Ulcerosa), España; Hospital Germans Trias i Pujol, CIBEREHD, Badalona, Barcelona, España
| | - Iria Bastón-Rey
- Miembros del Grupo Joven de GETECCU (Grupo Español de Trabajo sobre Enfermedad de Crohn y Colitis Ulcerosa), España; Hospital Clínico Universitario de Santiago, Santiago de Compostela, A Coruña, España
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Michel HK, Boyle B, David J, Donegan A, Drobnic B, Kren C, Maltz RM, McKillop HN, McNicol M, Oates M, Dotson JL. The Pediatric Inflammatory Bowel Disease Medical Home: A Proposed Model. Inflamm Bowel Dis 2022; 28:1420-1429. [PMID: 34562013 DOI: 10.1093/ibd/izab238] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/04/2021] [Indexed: 12/09/2022]
Abstract
Care for patients with inflammatory bowel disease (IBD) can be complex and costly. Care delivery models to address these challenges and improve care quality are essential. The patient-centered medical home (PCMH), which was developed in the primary care setting, has recently been applied successfully to the adult IBD population. Following the tenets of the PCMH, this specialty medical home (SMH) emphasizes team-based care that is accessible, comprehensive, patient/family-centered, coordinated, compassionate, and continuous and has demonstrated improved patient outcomes. Children and young adults with IBD have equally complex care needs, with additional challenges not faced by the adult population such as growth, physical and psychosocial development, and transition of care from pediatric to adult providers. Thus, we advocate that the components of the PCMH are equally-if not more-important in caring for the pediatric patient population. In this article, we review what is known about the application of the PCMH model in adult IBD care, describe care delivery within the Center for Pediatric and Adolescent IBD at Nationwide Children's Hospital as an example of a pediatric IBD medical home, and propose a research agenda to further the development and dissemination of comprehensive care delivery for children and adolescents with IBD.
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Affiliation(s)
- Hilary K Michel
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital, Columbus, OH, USA.,Department of Pediatrics, The Ohio State Wexner Medical Center, Columbus, OH, USA
| | - Brendan Boyle
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital, Columbus, OH, USA.,Department of Pediatrics, The Ohio State Wexner Medical Center, Columbus, OH, USA
| | - Jennie David
- Division of Pediatric Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH, USA
| | - Amy Donegan
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital, Columbus, OH, USA.,Department of Pediatrics, The Ohio State Wexner Medical Center, Columbus, OH, USA
| | - Barb Drobnic
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital, Columbus, OH, USA
| | - Courtney Kren
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital, Columbus, OH, USA
| | - Ross M Maltz
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital, Columbus, OH, USA.,Department of Pediatrics, The Ohio State Wexner Medical Center, Columbus, OH, USA.,The Center for Microbial Pathogenesis, The Research Institute, Nationwide Children's Hospital, Columbus, OH, USA
| | - Hannah N McKillop
- Department of Pediatrics, The Ohio State Wexner Medical Center, Columbus, OH, USA.,Division of Pediatric Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH, USA
| | - Megan McNicol
- Department of Pharmacy, Nationwide Children's Hospital, Columbus OH, USA
| | - Melanie Oates
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital, Columbus, OH, USA
| | - Jennifer L Dotson
- Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital, Columbus, OH, USA.,Department of Pediatrics, The Ohio State Wexner Medical Center, Columbus, OH, USA.,The Center for Innovation in Pediatric Practice, The Research Institute, Nationwide Children's Hospital, Columbus, OH, USA
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6
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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. Transitional care for inflammatory bowel disease: A survey of Japanese pediatric gastroenterologists. Pediatr Int 2021; 63:65-71. [PMID: 32621773 DOI: 10.1111/ped.14376] [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: 04/02/2020] [Revised: 06/02/2020] [Accepted: 06/29/2020] [Indexed: 02/06/2023]
Abstract
BACKGROUND In 2019 we reported the results of a Japanese national survey designed to explore the views of adult gastroenterologists regarding transitional care for patients with childhood-onset inflammatory bowel disease (IBD). For the present study, we conducted a similar survey of pediatric gastroenterologists to compare the views of the two sets of specialists. METHODS The survey conducted in 2019 involved 48 representative members of the Japanese Society for Pediatric Gastroenterology, Hepatology and Nutrition. They were contacted by conventional mail and their answers were not anonymized. Respondents who had already referred patients with IBD to adult gastroenterologists were asked in a questionnaire to rank the importance of specific statements on a Likert scale. RESULTS The response rate was 79% and 29 (60%) of the respondents had experienced transitional care for patients with IBD. Transfer to adult care was considered by 90% of the respondents to be the ideal form of medical care for adolescents/young adults with IBD. However, 59% of the respondents had experienced some degree of difficulty when making referrals for such care. The majority of pediatric gastroenterologists considered that the ideal age for transfer was 18-22 years. Among the respondents, physicians at municipal hospitals considered that the presence of diseases other than IBD and a shortage of manpower were significantly more important issues than other practice settings. CONCLUSIONS The present survey revealed that the general views regarding transitional care for IBD between pediatric and adult gastroenterologists were similar, except for the appropriate time for transfer. The results underline the importance of preparing a transition program appropriate to practice settings.
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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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Michel HK, Kim SC, Siripong N, Noll RB. Gaps Exist in the Comprehensive Care of Children with Inflammatory Bowel Diseases. J Pediatr 2020; 224:94-101. [PMID: 32482390 PMCID: PMC7483573 DOI: 10.1016/j.jpeds.2020.04.002] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/31/2019] [Revised: 02/18/2020] [Accepted: 04/01/2020] [Indexed: 12/12/2022]
Abstract
OBJECTIVES To describe patterns of primary and specialty care delivery in pediatric patients with inflammatory bowel diseases (IBD), delineate which members of the healthcare team provided services, and identify gaps in care. STUDY DESIGN Cross-sectional survey of parents of children (2-17 years) with IBD and adolescents with IBD (13-17 years) at a free-standing, quaternary children's hospital regarding healthcare receipt. RESULTS There were 161 parents and 84 adolescents who responded to the survey (75% and 60% response, respectively). The mean patient age was 14 ± 3 years, 51% were male, 80% had Crohn's disease, 16% ulcerative colitis, and 4% IBD-unspecified. Most parents were white (94%), living in a suburban setting (57%). Sixty-nine percent of households had ≥1 parent with a bachelor's degree or higher. Most had private insurance (43%) or private primary with public secondary insurance (34%). Most patients received annual check-ups (70%), vaccinations (78%), and care for minor illnesses (74%) from their primary care provider. Check-ups for gastrointestinal symptoms, IBD monitoring, and changes in type/dosing of IBD treatment were provided by their gastroenterology provider (77%, 93%, and 86% of patients, respectively). Discussions about family/peer relationships, school/extracurricular activities, and mood were not addressed in 30%-40% of participants. Adolescents frequently reported that no one had talked to them about substance use (40%), sexual health (50%), or body image (60%); 75% of adolescents and 76% of their parents reported that no one had discussed transitioning to an adult provider. CONCLUSIONS There were gaps in the psychosocial care of pediatric patients with IBD. Coordinated, comprehensive care delivery models are needed.
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Affiliation(s)
- Hilary K. Michel
- Division of Pediatric Gastroenterology, Hepatology, and Nutrition, University of Pittsburgh Medical Center (UPMC) Children’s Hospital of Pittsburgh, Pittsburgh, PA, United States,Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Nationwide Children’s Hospital and The Ohio State University College of Medicine, Columbus, OH, United States
| | - Sandra C. Kim
- Division of Pediatric Gastroenterology, Hepatology, and Nutrition, University of Pittsburgh Medical Center (UPMC) Children’s Hospital of Pittsburgh, Pittsburgh, PA, United States
| | - Nalyn Siripong
- Clinical Translational Science Institute, University of Pittsburgh, Pittsburgh, PA, United States
| | - Robert B. Noll
- Department of Pediatrics, University of Pittsburgh, Pittsburgh, PA, United States
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8
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Schuiteman S, Chua KP, Plegue MA, Ilyas O, Chang T. Self-Management of Health Care Among Youth: Implications for Policies on Transitions of Care. J Adolesc Health 2020; 66:616-622. [PMID: 32113903 PMCID: PMC7980769 DOI: 10.1016/j.jadohealth.2020.01.009] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/01/2019] [Revised: 01/01/2020] [Accepted: 01/03/2020] [Indexed: 01/21/2023]
Abstract
PURPOSE Transitions from pediatric to adult health care are important milestones for youth. In surveys, providers report that youth lack the motivation or skills to manage their care independently, a prerequisite for successful transitions. To assess the validity of this belief, we surveyed youth regarding their current and desired level of involvement in their care. METHODS In 2017-2018, we conducted a national text message survey of youth aged 14-24 years. The survey included three open-ended questions assessing participants' independence on three health care tasks (scheduling appointments, attending appointments, and picking up prescriptions) and one open-ended question assessing their desire to be more, less, or equally involved in their care as they are now. We qualitatively analyzed free-text responses to identify themes. RESULTS Among 1,214 eligible participants, 805 (66.3%) completed all four questions and were included in the sample. Forty-one percent of youth reported wanting to be more involved in their care. Among young adults aged 18-24 years, 22% were not fully independent on the three health care tasks and reported wanting to be less involved or equally as involved as they are currently. CONCLUSION Many youth should be viewed as partners in health care transitions instead of as barriers, but some youth are at high risk for failed transitions. Policymakers and providers should promote routine screening of youth for their current levels of engagement in care and desire to be more involved.
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Affiliation(s)
- Sam Schuiteman
- University of Michigan Medical School, Ann Arbor, Michigan.
| | - Kao-Ping Chua
- Department of Pediatrics, University of Michigan, Ann Arbor, Michigan; Institute of Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan
| | - Melissa A Plegue
- Department of Family Medicine, University of Michigan, Ann Arbor, Michigan
| | - Omar Ilyas
- University of Michigan, Ann Arbor, Michigan
| | - Tammy Chang
- Institute of Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan; Department of Family Medicine, University of Michigan, Ann Arbor, Michigan
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9
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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] [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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10
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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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11
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Abstract
PURPOSE OF REVIEW The transition of patients from pediatric to adult centered care represents not only the means to transfer medical care to a group of providers who specialize in adult care but also is part of the process of the transfer of healthcare responsibility from the family to a patient. The intent of this review is to provide a summary of some of the important studies published in the past 2 years that advance this knowledge. RECENT FINDINGS Progress has been made in the recognition of the process of transition, including developing tools to assess transition readiness, improving routes of communication along with patient education. Other studies provided information on patients' preferences for information seeking, types of family interactions, and factors that improved transition success. SUMMARY In general, reported clinics and programs did demonstrate improvements in adherence, clinic retention, and even quality of life. Further studies should focus on clinical outcomes of transition programs and risk assessment for transitioning patients.
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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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13
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Kim J, Ye BD. Successful Transition from Pediatric to Adult Care in Inflammatory Bowel Disease: What is the Key? Pediatr Gastroenterol Hepatol Nutr 2019; 22:28-40. [PMID: 30671371 PMCID: PMC6333582 DOI: 10.5223/pghn.2019.22.1.28] [Citation(s) in RCA: 16] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/23/2018] [Revised: 11/27/2018] [Accepted: 11/28/2018] [Indexed: 12/13/2022] Open
Abstract
The incidence of pediatric-onset inflammatory bowel disease (IBD) is on the rise, accounting for up to 25% of IBD cases. Pediatric IBD often has extensive bowel involvement with aggressive and rapidly progressing behavior compared to adult IBD. Because IBD has a high morbidity rate and can have a lifelong impact, successful transition from pediatric to adult care is important to maintain the continuity of care. Furthermore, successful transition facilitates appropriate development and psychosocial well-being among patients, as well as comprehensive and harmonious healthcare delivery amongst stakeholders. However, there are various obstacles related to patients, family, providers, and organizations that interfere with successful transition. Successful transition requires a flexible and tailored plan that is made according to the patient's developmental abilities and situation. This plan should be established through periodic interviews with the patient and family and through close collaboration with other care providers. Through a stepwise approach to the transition process, patients' knowledge and self-management skills can be improved. After preparation for the transition is completed and the obstacles are overcome, patients can be gradually moved to adult care. Finally, successful transition can increase patients' adherence to therapy, maintain the appropriate health status, improve patients' self-management, and promote self-reliance among patients.
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Affiliation(s)
- Jeongseok Kim
- Department of Gastroenterology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea
| | - Byong Duk Ye
- Department of Gastroenterology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea.,Inflammatory Bowel Disease Center, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea
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14
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Kim J, Ye BD. Successful transition from pediatric to adult care in inflammatory bowel disease: what is the key? Intest Res 2018; 17:24-35. [PMID: 30419636 PMCID: PMC6361010 DOI: 10.5217/ir.2018.00128] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/17/2018] [Accepted: 10/07/2018] [Indexed: 12/13/2022] Open
Abstract
The incidence of pediatric-onset inflammatory bowel disease (IBD) is on the rise, accounting for up to 25% of IBD cases. Pediatric IBD often has extensive bowel involvement with aggressive and rapidly progressing behavior compared to adult IBD. Because IBD has a high morbidity rate and can have a lifelong impact, successful transition from pediatric to adult care is important to maintain the continuity of care. Furthermore, successful transition facilitates appropriate development and psychosocial well-being among patients, as well as comprehensive and harmonious healthcare delivery amongst stakeholders. However, there are various obstacles related to patients, family, providers, and organizations that interfere with successful transition. Successful transition requires a flexible and tailored plan that is made according to the patient’s developmental abilities and situation. This plan should be established through periodic interviews with the patient and family and through close collaboration with other care providers. Through a stepwise approach to the transition process, patients’ knowledge and self-management skills can be improved. After preparation for the transition is completed and the obstacles are overcome, patients can be gradually moved to adult care. Finally, successful transition can increase patients’ adherence to therapy, maintain the appropriate health status, improve patients’ self-management, and promote self-reliance among patients.
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Affiliation(s)
- Jeongseok Kim
- Department of Gastroenterology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea
| | - Byong Duk Ye
- Department of Gastroenterology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea.,Department of Inflammatory Bowel Disease Center, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea
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15
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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: 7] [Impact Index Per Article: 0.9] [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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16
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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: 23] [Impact Index Per Article: 2.9] [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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17
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Däbritz J, Gerner P, Enninger A, Claßen M, Radke M. Inflammatory Bowel Disease in Childhood and Adolescence. DEUTSCHES ARZTEBLATT INTERNATIONAL 2017; 114:331-338. [PMID: 28597827 PMCID: PMC5470346 DOI: 10.3238/arztebl.2017.0331] [Citation(s) in RCA: 33] [Impact Index Per Article: 4.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/17/2016] [Revised: 11/17/2016] [Accepted: 03/02/2017] [Indexed: 12/12/2022]
Abstract
BACKGROUND The incidence of inflammatory bowel disease (IBD) in childhood and adolescence is 5-11 cases per 100 000 persons per year, corresponding to a new diagnosis of IBD in 800-1470 patients in Germany each year. METHODS This review is based on pertinent publications retrieved by a selective search in PubMed, including guidelines from Germany and abroad. RESULTS Children and adolescents with IBD often have extensive involvement and an aggressive course of disease. Nonetheless, infliximab and adalimumab are the only biological agents that have been approved for this group of patients. In Crohn's disease, exclusive enteral nutrition is the treatment of first choice for inducing a remission. Patients with (peri-)anal fistulae are treated primarily with infliximab. Corticosteroids and aminosalicylates should be used with caution. In contrast, children and adolescents with ulcerative colitis are treated with either aminosalicylates or prednisolone to induce a remission. As a rule, maintenance pharmacotherapy with thiopurines in Crohn's disease and severe ulcerative colitis, or with aminosalicylates in mild to moderate ulcerative colitis, is indicated for several years, at least until the end of puberty. Patients with refractory disease courses are treated with methylprednisolone, anti-TNF-α-antibodies, and/or calcineurin inhibitors. The spectrum of surgical interventions is the same as for adults. Specific aspects of the treatment of children and adolescents with IBD include adverse drug effects, the areas of nutrition, growth, and development, and the structured transition to adult medicine. CONCLUSION Children and adolescents with IBD or suspected IBD should be cared for by pediatric gastroenterologists in a center where such care is provided. Individualized treatment with multidisciplinary, family-oriented longterm care is particularly important. Drug trials in children and adolescents are needed so that the off-label use of drugs to patients in this age group can be reduced.
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Affiliation(s)
- Jan Däbritz
- Department of Pediatrics, University Hospital Rostock
- Centre for Immunobiology, Blizard Institute, Barts Cancer Institute the Barts & The London School of Medicine & Dentistry, Queen Mary University of London, Großbritannien
| | | | | | - Martin Claßen
- Department of Pediatrics, Klinikum links der Weser, Bremen
| | - Michael Radke
- Department of Pediatrics, University Hospital Rostock
- Department of Pediatrics, Klinikum Westbrandenburg, Potsdam
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18
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Ludvigsson JF, Agreus L, Ciacci C, Crowe SE, Geller MG, Green PHR, Hill I, Hungin AP, Koletzko S, Koltai T, Lundin KEA, Mearin ML, Murray JA, Reilly N, Walker MM, Sanders DS, Shamir R, Troncone R, Husby S. Transition from childhood to adulthood in coeliac disease: the Prague consensus report. Gut 2016; 65:1242-51. [PMID: 27196596 PMCID: PMC4975833 DOI: 10.1136/gutjnl-2016-311574] [Citation(s) in RCA: 72] [Impact Index Per Article: 8.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/01/2016] [Accepted: 03/27/2016] [Indexed: 12/20/2022]
Abstract
The process of transition from childhood to adulthood is characterised by physical, mental and psychosocial development. Data on the transition and transfer of care in adolescents/young adults with coeliac disease (CD) are scarce. In this paper, 17 physicians from 10 countries (Sweden, Italy, the USA, Germany, Norway, the Netherlands, Australia, Britain, Israel and Denmark) and two representatives from patient organisations (Association of European Coeliac Societies and the US Celiac Disease Foundation) examined the literature on transition from childhood to adulthood in CD. Medline (Ovid) and EMBASE were searched between 1900 and September 2015. Evidence in retrieved reports was evaluated using the Grading of Recommendation Assessment, Development and Evaluation method. The current consensus report aims to help healthcare personnel manage CD in the adolescent and young adult and provide optimal care and transition into adult healthcare for patients with this disease. In adolescence, patients with CD should gradually assume exclusive responsibility for their care, although parental support is still important. Dietary adherence and consequences of non-adherence should be discussed during transition. In most adolescents and young adults, routine small intestinal biopsy is not needed to reconfirm a childhood diagnosis of CD based on European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) or North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) criteria, but a biopsy may be considered where paediatric diagnostic criteria have not been fulfilled, such as, in a patient without biopsy at diagnosis, additional serology (endomysium antibody) has not been performed to confirm 10-fold positivity of tissue transglutaminase antibodies or when a no biopsy strategy has been adopted in an asymptomatic child.
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Affiliation(s)
- Jonas F Ludvigsson
- Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden,Department of Paediatrics, Örebro University Hospital, Örebro, Sweden,Division of Epidemiology and Public Health, School of Medicine, University of Nottingham, Nottingham, UK
| | - Lars Agreus
- Division of Family Medicine, Karolinska Institutet, Sweden
| | - Carolina Ciacci
- Department of Medicine and Surgery, University of Salerno, Salerno, Italy
| | - Sheila E Crowe
- University of California, San Diego (UCSD), San Diego, California, USA
| | | | - Peter H R Green
- Celiac Disease Center at Columbia University, New York, New York, USA
| | - Ivor Hill
- Division of Gastroenterology, Nationwide Children's Hospital, Columbus, Ohio, USA
| | - A Pali Hungin
- Primary Care and General Practice, School of Medicine, Pharmacy and Health, Durham University, Stockton on Tees, UK
| | - Sibylle Koletzko
- Ludwig-Maximilians-University of Munich, Dr. von Hauner Children's Hospital, Munich, Germany
| | - Tunde Koltai
- Hungary (for the Association of European Coeliac Societies, AOECS), Budapest, Hungary
| | - Knut E A Lundin
- Department of Gastroenterology and Centre for Immune Regulation, Oslo University Hospital Rikshospitalet, Oslo, Norway
| | - M Luisa Mearin
- Department of Paediatrics, Leiden University Medical Center, Leiden, The Netherlands
| | - Joseph A Murray
- Division of Gastroenterology and Hepatology, Department of Immunology Mayo Clinic, Rochester, Minnesota, USA
| | - Norelle Reilly
- Columbia University Medical Center-Division of Paediatric Gastroenterology, New York, New York, USA
| | - Marjorie M Walker
- Anatomical Pathology, Faculty of Health and Medicine, University of Newcastle, School of Medicine & Public Health, Newcastle, Australia
| | - David S Sanders
- Academic Unit of Gastroenterology, Royal Hallamshire Hospital & University of Sheffield, Sheffield, UK
| | - Raanan Shamir
- Institute of Gastroenterology, Nutrition and Liver Diseases Schneider Children's Medical Center of Israel, Tel-Aviv University, Tel Aviv, Israel
| | - Riccardo Troncone
- Department of Medical Translational Sciences & European Laboratory for the Investigation of Food Induced Diseases, University Federico II, Naples, Italy
| | - Steffen Husby
- Hans Christian Andersen Children's Hospital, Odense University Hospital, Odense C, Denmark
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19
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Transition of gastroenterological patients from paediatric to adult care: A position statement by the Italian Societies of Gastroenterology. Dig Liver Dis 2015; 47:734-40. [PMID: 26003394 DOI: 10.1016/j.dld.2015.04.002] [Citation(s) in RCA: 33] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/24/2014] [Revised: 03/07/2015] [Accepted: 04/06/2015] [Indexed: 02/07/2023]
Abstract
In 2013, four Italian Gastroenterological Societies (the Italian Society of Paediatric Gastroenterology, Hepatology and Nutrition, the Italian Society of Hospital Gastroenterologists and Endoscopists, the Italian Society of Endoscopy, and the Italian Society of Gastroenterology) formed a joint panel of experts with the aim of preparing an official statement on transition medicine in Gastroenterology. The transition of adolescents from paediatric to adult care is a crucial moment in managing chronic diseases such as celiac disease, inflammatory bowel disease, liver disease and liver transplantation. Improved medical treatment and availability of new drugs and surgical techniques have improved the prognosis of many paediatric disorders, prolonging survival, thus making the transition to adulthood possible and necessary. An inappropriate transition or the incomplete transmission of data from the paediatrician to the adult Gastroenterologist can dramatically decrease compliance to treatment and prognosis of a young patient, particularly in the case of severe disorders. For these reasons, the Italian gastroenterological societies decided to develop an official shared transition protocol. The resulting document discusses the factors influencing the transition process and highlights the main points to accomplish to optimize compliance and prognosis of gastroenterological patients during the difficult transition from childhood to adolescence and adulthood.
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20
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Transition readiness in pediatric patients with inflammatory bowel disease: patient survey of self-management skills. J Pediatr Gastroenterol Nutr 2015; 60:36-41. [PMID: 25199036 PMCID: PMC4624208 DOI: 10.1097/mpg.0000000000000555] [Citation(s) in RCA: 46] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
OBJECTIVE Transition may be associated with poor health outcomes, but limited data exist regarding inflammatory bowel disease (IBD). Acquisition of self-management skills is believed to be important to this process. IBD-specific checklists of such skills have been developed to aid in transition, but none has been well studied or validated. This study aimed to describe self-assessment ability to perform tasks on one of these checklists and to explore the relation between patient age and disease duration. METHODS Patients ages 10 to 21 years with IBD were recruited. An iPad survey queried the patients for self-assessment of ability to perform specific self-management tasks. Task categories included basic knowledge of IBD, doctor visits, medications and other treatments, and disease management. Associations with age and disease duration were tested with Spearman rank correlation. RESULTS A total of 67 patients (31 boys) with Crohn disease (n = 40), ulcerative colitis (n = 25), and indeterminate colitis (n = 2) participated in the study. Mean patient age was 15.8 ± 2.5 years, with median disease duration of 5 years (2 months-14 years). The proportion of patients who self-reported ability to complete a task without help increased with age for most tasks, including "telling others my diagnosis" (ρ = 0.43, P = 0.003), "telling medical staff I do not like or am having trouble following a treatment" (ρ = 0.37, P = 0.003), and "naming my medications" (ρ = 0.28, P = 0.02). No task significantly improved with disease duration. CONCLUSIONS Self-assessment of ability to perform some key tasks of transition appears to improve with age, but not with disease duration. More important, communication with the medical team did not improve with age, despite being of critical importance to functioning within an adult care model.
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