Transition from Pediatric to Adult Care
Transition of care is emerging as an increasingly important clinical focus for young adult patients with chronic conditions, including inflammatory bowel diseases (IBD). Transition from pediatric to adult care is not simply a transfer of patient care from one health-care provider to another. It is a dynamic process defined as the purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems. Several factors are involved in ensuring a successful transition, including education, communication, and ongoing preparation, to strengthen self-management skills, confidence, and independence. Effective transition requires a multidisciplinary and coordinated approach to ensure successful “graduation,” which is marked by independence, effective self-management, and establishment of care with an adult gastroenterologist and adult medical care team. This chapter will review current data, trends, and recommendations for this evolving subspecialty in IBD care.
KeywordsAdolescents and young adults (AYA) Self-management Teens Transition
- 1.Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, Slap GB. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14:570–6.Google Scholar
- 2.American Academy of P, American Academy of Family P, American College of P, Transitions Clinical Report Authoring G, Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128:182–200. doi: 10.1542/peds.2011-0969.
- 3.American Academy of P, American Academy of Family P, American College of Physicians-American Society of Internal M. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–6.Google Scholar
- 4.McPheeters M, Davis AM, Taylor JL, Brown RF, Potter SA, Epstein Jr RA. Transition care for children with special health needs. Rockville: Agency for Healthcare Research and Quality; 2014.Google Scholar
- 5.Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM, Society for Adolescent M. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33:309–11.Google Scholar
- 6.Baldassano R, Ferry G, Griffiths A, Mack D, Markowitz J, Winter H. Transition of the patient with inflammatory bowel disease from pediatric to adult care: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr. 2002;34:245–8.Google Scholar
- 7.Leung Y, Heyman MB, Mahadevan U. Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist. Inflamm Bowel Dis. 2011;17:2169–73. doi: 10.1002/ibd.21576.
- 8.Kahn SA. Transition of care for adolescents and young adults with IBD: the more we learn, the less we know. J Pediatr Gastroenterol Nutr. 2016 doi: 10.1097/MPG.0000000000001285.
- 9.El-Matary W. Transition of children with inflammatory bowel disease: big task, little evidence. World J Gastroenterol. 2009;15:3744–7.Google Scholar
- 10.Dabadie A, Troadec F, Heresbach D, Siproudhis L, Pagenault M, Bretagne JF. Transition of patients with inflammatory bowel disease from pediatric to adult care. Gastroenterol Clin Biol. 2008;32:451–9. doi: 10.1016/j.gcb.2008.01.044.
- 11.Marcus SB, Strople JA, Neighbors K, Weissberg-Benchell J, Nelson SP, Limbers C, Varni JW, Alonso EM. Fatigue and health-related quality of life in pediatric inflammatory bowel disease. Clin Gastroenterol Hepatol. 2009;7:554–61.Google Scholar
- 12.Karwowski CA, Keljo D, Szigethy E. Strategies to improve quality of life in adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2009;15:1755–64. doi: 10.1002/ibd.20919.
- 13.Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–53. doi: 10.1136/adc.2010.202473.
- 14.Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115:112–20. doi: 10.1542/peds.2004-1321.
- 15.Bensen R, McKenzie R, Fernandes S, Fishman L. Transitions in pediatric gastroenterology: results of a National Provider Survey. J Pediatr Gastroenterol Nutr. 2016;63(5):488–93. doi: 10.1097/MPG.0000000000001199.
- 16.Gray WN, Maddux MH. Current transition practices in pediatric IBD: findings from a National Survey of Pediatric Providers. Inflamm Bowel Dis. 2016;22:372–9. doi: 10.1097/MIB.0000000000000642.
- 17.Adamiak T, Walkiewicz-Jedrzejczak D, Fish D, Brown C, Tung J, Khan K, Faubion Jr W, Park R, Heikenen J, Yaffee M, Rivera-Bennett MT, Wiedkamp M, Stephens M, Noel R, Nugent M, Nebel J, Simpson P, Kappelman MD, Kugathasan S. Incidence, clinical characteristics, and natural history of pediatric IBD in Wisconsin: a population-based epidemiological study. Inflamm Bowel Dis. 2013;19:1218–23. doi: 10.1097/MIB.0b013e318280b13e.
- 18.Kugathasan S, Judd RH, Hoffmann RG, Heikenen J, Telega G, Khan F, Weisdorf-Schindele S, San Pablo Jr W, Perrault J, Park R, Yaffe M, Brown C, Rivera-Bennett MT, Halabi I, Martinez A, Blank E, Werlin SL, Rudolph CD, Binion DG. Epidemiologic and clinical characteristics of children with newly diagnosed inflammatory bowel disease in Wisconsin: a statewide population-based study. J Pediatr. 2003;143:525–31.Google Scholar
- 19.Goodhand J, Dawson R, Hefferon M, Tshuma N, Swanson G, Wahed M, Croft NM, Lindsay JO. Inflammatory bowel disease in young people: the case for transitional clinics. Inflamm Bowel Dis. 2010;16:947–52. doi: 10.1002/ibd.21145.
- 20.Turunen P, Kolho KL, Auvinen A, Iltanen S, Huhtala H, Ashorn M. Incidence of inflammatory bowel disease in Finnish children, 1987–2003. Inflamm Bowel Dis. 2006;12:677–83.Google Scholar
- 21.Van Limbergen J, Russell RK, Drummond HE, Aldhous MC, Round NK, Nimmo ER, Smith L, Gillett PM, McGrogan P, Weaver LT, Bisset WM, Mahdi G, Arnott ID, Satsangi J, Wilson DC. Definition of phenotypic characteristics of childhood-onset inflammatory bowel disease. Gastroenterology. 2008;135:1114–22. doi: 10.1053/j.gastro.2008.06.081.
- 22.Fishman LN, Barendse RM, Hait E, Burdick C, Arnold J. Self-management of older adolescents with inflammatory bowel disease: a pilot study of behavior and knowledge as prelude to transition. Clin Pediatr (Phila). 2010;49:1129–33. doi: 10.1177/0009922810379042.
- 23.Greenley RN, Kunz JH, Biank V, Martinez A, Miranda A, Noe J, Telega G, Tipnis NA, Werlin S, Stephens MC. Identifying youth nonadherence in clinical settings: data-based recommendations for children and adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2012;18:1254–9. doi: 10.1002/ibd.21859.
- 24.Whitfield EP, Fredericks EM, Eder SJ, Shpeen BH, Adler J. Transition readiness in pediatric patients with inflammatory bowel disease: a patient survey of self-management skills. J Pediatr Gastroenterol Nutr. 2015;60:36–41. doi: 10.1097/MPG.0000000000000555.
- 25.Gray WN, Denson LA, Baldassano RN, Hommel KA. Treatment adherence in adolescents with inflammatory bowel disease: the collective impact of barriers to adherence and anxiety/depressive symptoms. J Pediatr Psychol. 2012;37:282–91. doi: 10.1093/jpepsy/jsr092.
- 26.Greenley RN, Stephens M, Doughty A, Raboin T, Kugathasan S. Barriers to adherence among adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2010;16:36–41. doi: 10.1002/ibd.20988.
- 27.Greenley RN, Karazsia B, Schurman JV, Gumidyala AP, Nguyen EU, Thomason MM, Walter JG, Noe J, Werlin S, Kahn SA. Trajectories of oral medication adherence in youth with inflammatory bowel disease. Health Psychol. 2015b;34:514–21. doi: 10.1037/hea0000149.
- 28.Fishman LN, Houtman D, van Groningen J, Arnold J, Ziniel S. Medication knowledge: an initial step in self-management for youth with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2011;53:641–5. doi: 10.1097/MPG.0b013e3182285316.
- 29.Hait EJ, Barendse RM, Arnold JH, Valim C, Sands BE, Korzenik JR, Fishman LN. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr. 2009;48:61–5. doi: 10.1097/MPG.0b013e31816d71d8.
- 30.GotTransition.org. Sample Transition Readiness Assessment for Youth.
- 31.Hait E, Arnold JH, Fishman LN. Educate, communicate, anticipate-practical recommendations for transitioning adolescents with IBD to adult health care. Inflamm Bowel Dis. 2006;12:70–3. doi: 10.1097/01.MIB.0000194182.85047.6a.
- 32.NASPGHAN. Transitioning a patient with IBD from pediatric to adult care.Google Scholar
- 33.CDHNF. Preparing to transition from a pediatric to adult care practitioner: transitioning to adulthood with IBD.Google Scholar
- 34.Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, Hogan SL, Gipson DS, McCoy LP, Hooper SR. A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TR(x)ANSITION scale. Ren Fail. 2012;34(6):744–753. doi: 10.3109/0886022X.2012.678171. Epub 2012 May 14. PMID: 22583152.
- 35.Ferris M, Cohen S, Haberman C, Javalkar K, Massengill S, Mahan JD, Kim S, Bickford K, Cantu G, Medeiros M, Phillips A, Ferris MT, Hooper SR. Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx questionnaire. J Pediatr Nurs. 2015;30(5):691–699. doi: 10.1016/j.pedn.2015.05.009. Epub 2015 Jul 22. PMID: 26209873.
- 36.Bell L. Adolescents with renal disease in an adult world: meeting the challenge of transition of care. Nephrol Dial Transplant. 2007;22:988–91. doi: 10.1093/ndt/gfl770.
- 37.Desir B, Seidman EG. Transitioning the paediatric IBD patient to adult care. Best Pract Res Clin Gastroenterol. 2003;17:197–212.Google Scholar
- 38.Greenley RN, Gumidyala AP, Nguyen E, Plevinsky JM, Poulopoulos N, Thomason MM, Walter JG, Wojtowicz AA, Blank E, Gokhale R, Kirschner BS, Miranda A, Noe JD, Stephens MC, Werlin S, Kahn SA. Can you teach a teen new tricks? Problem solving skills training improves oral medication adherence in pediatric patients with inflammatory bowel disease participating in a randomized trial. Inflamm Bowel Dis. 2015a;21:2649–57. doi: 10.1097/MIB.0000000000000530.
- 39.Spekhorst LM, Hummel TZ, Benninga MA, van Rheenen PF, Kindermann A. Adherence to oral maintenance treatment in adolescents with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2016;62:264–70. doi: 10.1097/MPG.0000000000000924.