The experiences of adolescent solid organ transplantation recipients, parents, and healthcare professionals in healthcare transition: A qualitative systematic review

Agarwal, 2017, Perspectives on care for young adults with type 1 diabetes transitioning from pediatric to adult health systems: A national survey of pediatric endocrinologists, Pediatric Diabetes, 18, 524, 10.1111/pedi.12436 Annunziato, 2013, Strangers headed to a strange land? A pilot study of using a transition coordinator to improve transfer from pediatric to adult services, The Journal of Pediatrics, 163, 1628, 10.1016/j.jpeds.2013.07.031 Bert, 2020, Transitional care: A new model of care from young age to adulthood, Health Policy, 124, 1121, 10.1016/j.healthpol.2020.08.002 Bitencourt, 2021, Clinical team perspectives on the psychosocial aspects of transition to adult care for patients with childhood- onset systemic Lupus Erythematosus, Arthritis Care & Research (Hoboken), 73, 39, 10.1002/acr.24463 Blum, 1993, Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine, The Journal of Adolescent Health, 14, 570, 10.1016/1054-139X(93)90143-D Chandra, 2015, Growing up: Not an easy transition- perspectives of patients and parents regarding transfer from a pediatric liver transplant center to adult care, International journal of hepatology (New York), 2015, 765957 Chhiba, 2022, Factors associated with graft survival in south African adolescent renal transplant patients at CMJAH over a 20-year period (GRAFT-SAT study), Pediatric Transplantation, 26, 10.1111/petr.14148 Coyne, 2019, Healthcare transition for adolescents and young adults with long-term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences, Journal of Clinical Nursing, 28, 4062, 10.1111/jocn.15006 Crawford, 2022, Transition from a renal paediatric clinic to an adult clinic: Perspectives of adolescents and young adults, parents and health professionals, Journal of Child Health Care, 26, 531, 10.1177/13674935211028410 Dezsofi, 2018, Solid organ transplantation in childhood, Orvosi Hetilap, 159, 1948 Dharnidharka, 2015, Across all solid organs, adolescent age recipients have worse transplant organ survival than younger age children: A US national registry analysis, Pediatric Transplantation, 19, 471, 10.1111/petr.12464 Dwyer-Matzky, 2018, Lack of preparedness for pediatric to adult-oriented health care transition in hospitalized adolescents and young adults, Academic Pediatrics, 18, 102, 10.1016/j.acap.2017.07.008 Fegran, 2014, Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis, International Journal of Nursing Studies, 51, 123, 10.1016/j.ijnurstu.2013.02.001 Fisch, S. M., Neininger, M. P., Prenzel, F., Bernhard, M. K., Hornemann, F., Merkenschlager, A., … Bertsche, A. (2018). Experiences, expectations, and fears of adolescents with epilepsy or bronchial asthma. European Journal of Pediatrics, 177(10), 1451–1457. https://doi.org/10.1007/s00431-018-3200-4 Gilleland Marchak, 2015, Providers’ assessment of transition readiness among adolescent and young adult kidney transplant recipients, Pediatric Transplantation, 19, 849, 10.1111/petr.12615 Gold, 2015, Transition to adult care in pediatric solid-organ transplant: development of a practice guideline, Progress in Transplantation (Aliso Viejo, Calif.), 25, 131, 10.7182/pit2015833 Gray, 2021, Adult provider perspectives on transition and transfer to adult care: A multi-specialty, multi-institutional exploration, Journal of Pediatric Nursing, 59, 173, 10.1016/j.pedn.2021.04.017 Heldman, 2015, National survey of adult transplant hepatologists on the pediatric-to-adult care transition after liver transplantation, Liver Transplantation, 21, 213, 10.1002/lt.24044 Hoegy, 2019, Medication adherence in pediatric transplantation and assessment methods: A systematic review, Patient Preference and Adherence, 13, 705, 10.2147/PPA.S200209 Jones, 2019, Evaluation of a health care transition improvement process in seven large health care systems, Journal of Pediatric Nursing, 47, 44, 10.1016/j.pedn.2019.04.007 Jose, 2021, Evaluation of a young adult renal and transplant transition clinic in a regional setting: Supporting young adults and parents’ transition to self-management, The Australian Journal of Rural Health, 29, 83, 10.1111/ajr.12683 Junge, 2017, Transition after pediatric liver transplantation - perceptions of adults, adolescents and parents, World Journal of Gastroenterology, 23, 2365, 10.3748/wjg.v23.i13.2365 Kelly, 2014, The adolescent liver transplant patient, Clinics in Liver Disease, 18, 613, 10.1016/j.cld.2014.05.006 Kerkar, 2015, Transitional care in solid organ transplantation, Seminars in Pediatric Surgery, 24, 83, 10.1053/j.sempedsurg.2015.01.006 Killian, 2017, Psychosocial predictors of medication adherence in pediatric heart and lung organ transplantation, Pediatric Transplantation, 21, 10.1111/petr.12899 Kim, 2014, Long-term outcomes of children after solid organ transplantation, Clinics (São Paulo, Brazil), 69, 28, 10.6061/clinics/2014(Sup01)06 Korus, 2011, Exploring the information needs of adolescents and their parents throughout the kidney transplant continuum, Progress in Transplantation, 21, 53, 10.1177/152692481102100107 Landers, 2016, Examining the interaction of parental involvement and parenting style in predicting adherence in youth with type 1 diabetes, Families, Systems & Health, 34, 41, 10.1037/fsh0000183 Lawrence, 2020, Adherence, medical outcomes, and health care costs in adolescents/young adults following pediatric liver transplantation, Journal of Pediatric Gastroenterology and Nutrition, 70, 183, 10.1097/MPG.0000000000002553 Lieb, 2020, Prospective single-Centre clinical observational study on electronically monitored medication non-adherence, its psychosocial risk factors and lifestyle behaviours after heart transplantation: A study protocol, BMJ Open, 10, 10.1136/bmjopen-2020-038637 Lochridge, 2013, Perceptions of solid organ transplant recipients regarding self-care management and transitioning, Pediatric Nursing, 39, 81 Lockwood, 2020, Chapter 2: Systematic reviews of qualitative evidence Macher, 2022, Transition of care from childhood and adolescence to adulthood in nephrology, Medical Science (Paris), 38, 182, 10.1051/medsci/2022003 Mazur, 2017, European academy of Paediatric consensus statement on successful transition from paediatric to adult care for adolescents with chronic conditions, Acta Paediatrica, 106, 1354, 10.1111/apa.13901 Mehta, 2017, Medication adherence among adolescent solid-organ transplant recipients: A survey of healthcare providers, Pediatric Transplantation, 21, 10.1111/petr.13018 Mitchell, 2017, Transition to adult care for pediatric liver transplant recipients: The Western Australian experience, Pediatric Transplantation, 21, 10.1111/petr.12820 Nassetta, 2022, A systematic review of adherence to immunosuppression among pediatric heart transplant patients, J Cardiovasc Dev Dis, 9 Organ Procurement and Transplantation Network Organ Procurement and Transplantation Network Prentice-Hoogervorst, 2022, Adolescent paediatric transplant patients’ experiences of transition to adult services, Health SA, 27, 1937 Prüfe, 2017, Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: A qualitative study, BMJ Open, 7, 10.1136/bmjopen-2016-015593 Rea, 2021, Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives, Patient Education and Counseling, 104, 2089, 10.1016/j.pec.2021.01.027 Sarigol, 2017, Pediatric liver transplant patients’ transition to adulthood: Patient and parent experiences, Nursing & Health Sciences, 19, 393, 10.1111/nhs.12358 Schmidt, 2018, Differential effect of a patient-education transition intervention in adolescents with IBD vs. diabetes, European Journal of Pediatrics, 177, 497, 10.1007/s00431-017-3080-z Shellmer, 2014, The start of the transplant journey: Referral for pediatric solid organ transplantation, Pediatric Transplantation, 18, 125, 10.1111/petr.12215 Steinberg, 2018, Adherence in pediatric kidney transplant recipients: Solutions for the system, Pediatric Nephrology, 33, 361, 10.1007/s00467-017-3637-0 Stevens, 2021, Transition of pediatric liver transplant patients to adult care: A review, Current Gastroenterology Reports, 23, 3, 10.1007/s11894-020-00802-1 Thomas, 2008, Methods for the thematic synthesis of qualitative research in systematic reviews, BMC Medical Research Methodology, 8, 45, 10.1186/1471-2288-8-45 Toft, 2018, The experiences of young liver patients transferring from Children’s to adult services and their support needs for a successful transition, Progress in Transplantation, 28, 244, 10.1177/1526924818781567 Tong, 2012, Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ, BMC Medical Research Methodology, 12, 181, 10.1186/1471-2288-12-181 Twito, 2019, The “combined team” transition clinic model in endocrinology results in high adherence rates and patient satisfaction, Journal of Pediatric Endocrinology & Metabolism, 32, 505, 10.1515/jpem-2019-0056 White, 2018, Supporting the health care transition from adolescence to adulthood in the medical home, Pediatrics, 142, 10.1542/peds.2018-2587 Wright, 2019, Healthcare transition in pediatric liver transplantation: The perspectives of pediatric and adult healthcare professionals, Pediatric Transplantation, 23, 10.1111/petr.13530 Wright, 2016, “are these adult doctors gonna know me?” experiences of transition for young people with a liver transplant, Pediatric Transplantation, 20, 912, 10.1111/petr.12777 Wright, 2017, Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services, Pediatric Transplantation, 21, 10.1111/petr.12760 Yassaee, 2019, The impact of age of transfer on outcomes in the transition from pe-diatric to adult health systems:A systematic review of reviews, The Journal of Adolescent Health, 64, 709, 10.1016/j.jadohealth.2018.11.023 Zimmerman, 2022, The roles of quality of life and family and peer support in feelings about transition to adult care in adolescents with gastroenterology, renal, and rheumatology diseases, Journal of Pediatric Nursing, 62, 193, 10.1016/j.pedn.2021.04.032