Improving the Pediatric to Adult Care Transition Experience: Recommendations from Young Adults with Complex Care Needs: A Scoping Review Protocol
DOI:
https://doi.org/10.15273/hpj.v1i1.10643Abstract
With advancements in modern medicine, an increasing number of youth with complex care needs (CCN) survive into adulthood. As service demands increase for this group, challenges exist on how to best facilitate meeting their needs as they transition from pediatric to adult health care. There is growing evidence of young adults describing their transition experiences and suggesting improvements to the design and delivery of these services. By synthesizing the existing literature, an increased understanding can be gained about the recommendations of those who have recently transitioned from pediatric to adult health care, thus improving both patient outcomes and experiences. This scoping review aims to comprehensively map recommendations on how to improve the transition from pediatric to adult health care based on the experiences of young adults (aged 18-30) with CCN. This study protocol outlines a scoping review of peer-reviewed and grey literature, following the Joanna Briggs Institute (JBI) scoping review methodology. Literature will be identified using a comprehensive search strategy developed by a JBI-trained librarian. Papers involving primary studies with recommendations of young adults recently transitioned from pediatric to adult care will be included. Search strategy results will be screened by two independent reviewers and included studies will have duplicates removed and charted according to a modified PRISMA flow diagram. Working with the Centre for Research in Integrated Care at the University of New Brunswick, knowledge translation activities will involve targeted communication channels to a variety of knowledge users, such as researchers, clinicians, and policymakers.
Keywords: pediatric to adult transition, transition experience, complex care needs, scoping review, quality improvement, patient engagement
References
Al-Yateem, N. (2012). Child to adult: Transitional care for young adults with cystic fibrosis. The British Journal of Nursing, 21(14), 850–854. https://doi.org/10.12968/bjon.2012.21.14.850
Amaria, K., Stinson, J., Cullen-Dean, G., Sappleton, K., & Kaufman, M. (2011). Tools for addressing systems issues in transition. Healthcare Quarterly, 14(Spec No. 3), 72–76.
Arim, R. G., Kohen, D. E., Brehaut, J. C., Guèvremont, A., Garner, R. E., Miller, A. R., McGrail, K., Brownell, M., Lach, L. M., & Rosenbaum, P. L. (2015). Developing a non-categorical measure of child health using administrative data. Statistics Canada. https://www150.statcan.gc.ca/n1/pub/82-003-x/2015002/article/14140-eng.htm
Barnert, E. S., Coller, R. J., Nelson, B. B., Thompson, L. R., Tran, J., Chan, V., Padilla, C., Klitzner, T.S., Szilagyi, M., & Chung, P. J. (2019). Key population health outcomes for children with medical complexity: A systematic review. Maternal and Child Health Journal, 23(9), 1167–1176. https://doi.org/10.1007/s10995-019-02752-1
Betz, C. L., Lobo, M. L., Nehring, W. M., & Bui, K. (2013). Voices not heard: A systematic review of adolescents‘ and emerging adults‘ perspectives of health care transition. Nursing Outlook, 61(5), 311–336. https://doi.org/10.1016/j.outlook.2013.01.008
Bloom, S. R., Kuhlthau, K., Van Cleave, J., Knapp, A. A., Newacheck, P., & Perrin, J. M. (2012). Health care transition for youth with special health care needs. Journal of Adolescent Health, 51(3), 213–219. https://doi.org/10.1016/j.jadohealth.2012.01.007
Blum, R. W. (2002). Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care. Pediatrics, 110, 1301–1303.
Blum, R. W., Garell, D., Hodgman, C. H., Jorissen, T. W., Okinow, N. A., Orr, D. P., & Slap, G. B. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 14(7), 570–576.
Bonato, S. (2018). Searching the grey literature: A handbook for searching reports, working papers, and other unpublished research. Rowman & Littlefield.
Brenner, M., Kidston, C., Hilliard, C., Coyne, I., Eustace-Cook, J., Doyle, C., Begley, T., & Barrett, M. J. (2018). Children‘s complex care needs: A systematic concept analysis of multidisciplinary language. European Journal of Pediatrics, 177(11), 1641–1652. https://doi.org/10.1007/s00431-018-3216-9
Chamberlain, M. A., & Kent, R. M. (2005). The needs of young people with disabilities in transition from paediatric to adult services. Europa Medicophysica, 41(2), 111–123.
Cheak-Zamora, N. C., & Teti, M. (2015). “You think it‘s hard now ”¦ It gets much harder for our children”: Youth with autism and their caregiver‘s perspectives of health care transition services. Autism, 19(8), 992–1001. https://doi.org/10.1177/1362361314558279
Cohen, E., Berry, J. G., Sanders, L., Schor, E. L., & Wise, P. H. (2018). Status complexicus? The emergence of pediatric complex care. Pediatrics, 141(Supplement 3), S202–S211. https://doi.org/10.1542/peds.2017-1284E
Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538. https://doi.org/10.1542/peds.2010-0910
de Jong-Gierveld, J. (2001). Adolescent behavior: Demographic. In N. J. Smelser, & P. B. Baltes (Eds.), International encyclopedia of the social and behavioral sciences, (pp. 98–101). Elsevier.
Fegran, L., Hall, E. O. C., Uhrenfeldt, L., Aagaard, H., & Ludvigsen, M.S. (2014). Adolescents‘ and young adults‘ transition experiences when transferring from pediatric to adult care: A qualitative metasynthesis. International Journal of Nursing Studies, 51(1), 123–135. https://doi.org/10.1016/j.ijnurstu.2013.02.001
Got Transition. (n.d.). A family toolkit: Pediatric-to-adult health care transition. https://www.gottransition.org/resource/?hct-family-toolkit
Hopper, A., Dokken, D., & Ahmann, E. (2014). Transitioning from pediatric to adult health care: The experience of patients and families. Pediatric Nursing, 40(5), 249–252.
Kaufman, M., Pinzon, J., Canadian Paediatric Society, &Adolescent Health Committee (2007). Transition to adult care for youth with special health care needs. Paediatrics and Child Health, 12(9), 785–788. https://doi.org/10.1093/pch/12.9.785
Luxford, K., & Sutton, S. (2014). How does patient experience fit into the overall healthcare picture? Patient Experience Journal, 1(1), 20–27.
McGowan, J., Sampson, M., Salzwedel, D. M., Cogo, E., Foerster, V., & Lefebvre, C. (2016). PRESS peer review of electronic search strategies: 2015 guideline statement. Journal of Clinical Epidemiology, 75, 40–46. https://doi.org/10.1016/j.jclinepi.2016.01.021
Nakhla, M. M., & Daneman, D. (2012). Transitions in the care of children and youth with type 1 diabetes. Diabetes Management, 2(6), 537–547.
Nelson, A. (2016). Paving the way for smooth transitions: Continuity of care from child to adult mental health systems [Unpublished master‘s thesis]. Simon Fraser University. https://summit.sfu.ca/item/16351
New Brunswick Health Council. (2017). Primary health survey 2017. https://nbhc.ca/sites/default/files/assets/images/results_nbhc_2017_primary_health_survey.xlsx
Nguyen, T., Stewart, D., Rosenbaum, P., Baptiste, S., Kraus de Camargo, O., &
Gorter, J. W. (2018). Using the ICF in transition research and practice? Lessons from a scoping review. Research in Developmental Disabilities, 72, 225–239. https://doi.org/10.1016/j.ridd.2017.11.003
Okumura, M. J., Saunders, M., & Rehm, R. S. (2015). The role of health advocacy in transitions from pediatric to adult care for children with special health care needs: Bridging families, provider and community services. Journal of Pediatric Nursing, 30(5), 714–723. https://doi.org/10.101/j.pedn.2015.05.015
Peters, M. D. J., Godfrey, C., McInerney, P., Munn, Z., Tricco, A. C., & Khalil, H. (2020). Chapter 11: Scoping reviews. In E. Aromataris, Z. Munn (Eds.), JBI Manual for Evidence Synthesis. JBI. https://doi.org/10.46658/JBIMES-20-12
Peters, M. D. J., Godfrey, C. M., Khalil, H., McInerney, P., Parker, D., & Soares,
C. B. (2015). Guidance for conducting systematic scoping reviews. JBI Evidence Implementation, 13(3), 141–146. https://doi.org/10.1097/XEB.0000000000000050
Pinzon, J., Harvey, J., Canadian Paediatric Society, & Adolescent Health Committee (2006). Care of adolescents with chronic conditions. Paediatrics and Child Health, 11(1), 43–48. https://doi.org/10.1093/pch/11.1.43
Rich, E. F. (2017). Getting ready to move on: Considering attachment within young peoples‘ experiences of preparing to transition out of CAMHS (Publication No. 10765524) [Doctoral dissertation, University of Leicester]. ProQuest Dissertations & Theses.
Saha, S., Loehrer, S., Cleary-Fisherman, M., Johnson, K., Chenard, R., Gunderson, G., Goldberg. R., Little, J., Resnick, J., Cutts, T., & Barnett, K. (2017). Pathways to population health: An invitation to health care change agents. 100 Million Healthier Lives. http://www.ihi.org/Topics/Population-Health/Documents/PathwaystoPopulationHealth_Framework.pdf
Schmidt, A., Ilango, S. M., McManus, M. A., Rogers, K. K., & White, P. H. (2020). Outcomes of pediatric to adult health care transition interventions: An updated systematic review. Journal of Pediatric Nursing, 51, 92–107. https://doi.org/10.1016/j.pedn.2020.01.002
Tricco, A. C., Lillie, E., Zarin, W., O'Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., . . . Straus, S. E. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850
Vincent, J. (2017). Being and becoming: Transition from higher education for emerging adults on the autism spectrum [Doctoral thesis]. Lancaster University. https://doi.org/10.17635/lancaster/thesis/76
White, P. H., Cooley, W. C., Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians. (2018). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 142(5), Article e20182587. https://doi.org/10.1542/peds.2018-2587
Wise, P. H. (2004). The transformation of child health in the United States. Health Affairs, 23(5), 9–25. https://doi.org/10.1377/hlthaff.23.5.9
