Anita Afzali MD, MPH
Director, Inflammatory Bowel Diseases Program
University of Washington Medicine - Harborview Medical Center





 

Inflammatory bowel disease (IBD) is a heterogeneous group of diseases that includes both ulcerative colitis (UC) and Crohn’s disease (CD).  Approximately 30% of CD and 20% of UC patients have disease onset prior to the age of 20 and the incidence of pediatric IBD is rising¹.  Similar to other chronic diseases such as cystic fibrosis, children with IBD will eventually require transition to adult care.  This requires careful attention, collaboration and coordination to ensure best outcomes for a vulnerable population.  The transition of care is a “purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems”².  This should not be mistaken for a transfer of care, which is a single event and a simple “planned movement of patient and their medical records from one provider to another at a distinct point in time”³.  

 

Pediatric versus Adult Healthcare Models in IBD: 

The pediatric healthcare model is family-focused and is usually designed to include a multi-disciplinary team.  It requires parental or caregiver involvement for knowledge, understanding, guidance and consent^4,5.  Unlike the pediatric model, the adult healthcare model is one which promotes individualized care and independence^4,5.  There is also less familiarity of the adult provider on issues related to adolescent growth and development and child-specific psychosocial needs.  Despite differences in the healthcare models, there are also overlapping events such as school graduations, moving away from home, financial independence, marriage and pregnancy, which may further impact the timing of transition, there may also be less oversight available by parent or caregiver, as well as economic barriers or access to health care and issues with adherence to treatment.  

 

Differences Between Pediatric and Adult IBD:

Adolescents with IBD are more likely to have more severe complex disease, including more extensive CD or UC involvement, higher risk for perianal disease, and are more likely to require use of biologic agents and immunomodulator therapy, and are at a higher risk for steroid dependence^6,7.  All of these factors suggest more aggressive disease phenotype in pediatric patients.  The risk for surgery among adolescents is about 35% within the first five years of time of diagnosis⁷.  Adolescents are also more likely to have upper gastrointestinal and extraintestinal manifestations⁷.  Nutritional impairment and weight loss occur in nearly 85% of children with IBD⁸, and the highest levels of mental health disorders including depression and anxiety are found among adolescents with IBD compared to other chronic conditions⁹. 

The first period of adult life from age 18 to 25 has been described as an unstable period between adolescence and full adulthood, and as with other chronic diseases, this period may be longer in IBD³.  The ‘emerging adults with IBD’ or EAI³ have an increased risk for disease progression and other complications of disease¹⁰, higher economic burden of all-cause total health care costs, highest utilization of emergency services, and poorer adherence to treatment^11-14.

Because of these differences, including more severe disease phenotype, need for chronic medications, increased risks for anxiety, depression and other co-morbidities, and increased healthcare costs and poorer adherence, in an effort to improve outcomes, it is imperative for uninterrupted care and management of IBD in these young adults.

 

Resources for Evaluation of Patient Readiness and Adherence for Transition of Care:

The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) has published recommendations regarding the transition of patients with childhood onset of IBD to adult care¹⁵.  The NASPGHAN recommendations to the pediatric gastroenterologist are to begin the process of transition when the patient enters early to middle adolescence and:

1. See the adolescent patient without their parents or caregivers in order to build independence and self-reliance.
2. Discuss and introduce the subject and the benefits of a transition to an adult gastroenterologist early on to the patient and family.
3. Select an experienced adult gastroenterologist knowledgeable and interested in the unique needs of young adults with IBD.
4. Provide all appropriate medical records and summaries to the adult gastroenterologist in advance, to ensure confidence in the patient and family that the pediatric and adult providers are working together.  The NASPGHAN Medical Summary Form can be found in Appendix A of the medical position statement¹⁵.

 

NASPGHAN has also created a ‘Healthcare Provider Transitioning Checklist’ which can be utilized as early as age 12-14 years, to evaluate the readiness of the adolescents to transitional care [http://www.naspghan.org/files/documents/pdfs/medical resources/ibd/Checklist_PatientandHealthcareProdiver_TransitionfromPedtoAdult.pdf]¹⁵

There are also other clinical instruments available to perform regular assessments of the EAI or young adult’s readiness and potential areas for early intervention, to best achieve transition-relevant skills.  Although the evaluation of readiness is difficult to measure, tools such as the Transition Readiness Assessment Questionnaire (TRAQ)¹⁶ and the portable medical record called MyHealth Passport for IBD¹⁷ are both available online and be utilized by patients and providers in clinic.  The Morisky Adherence Scale¹⁸ is another clinical instrument tool used to identify and intervene early in any potential adherence problems.  And lastly, the PHQ-9 Depression Screening Tool¹⁹ incorporates DSM-IV diagnostic criteria for depression and can be incorporated with the other transition readiness and adherence tools to evaluate all patients prior to transition of care.

Organizing a Transition of Care in IBD:

The key players involved in a transitional care program should always center around the patient.  Parents/caregivers, pediatric and adult gastroenterologists, IBD nurse specialists, psychologists or counselors, dietician and pharmacists should all be part of this multidisciplinary team to ensure best delivery of care and improved patient outcomes.

Three goals in the process of transition in IBD were identified by JC Escher: “(1) to get the patient ready for transfer, having attained specific skills and knowledge; (2) to get the parents ready for transfer; (3) to get the adult gastroenterologist ready and well informed at the time of transfer.”²⁰

Although there are several suggested timelines for the transition process, it is important to understand that this still requires special attention and tailoring based on the young adult’s developmental abilities, which is more based on competency and emotional and cognitive maturity rather than a chronological age alone²¹.  In a survey of adult gastroenterologists caring for young adults with IBD, it was reported that young adults need improved education about their medical history and treatment/medications, and pediatric gastroenterologists need better communication with referring adult providers.  Lastly, the study concluded that adult providers would benefit from formalized adolescent training⁵.  Similar results were described in a UK study²² of adult and pediatric gastroenterologists, which also concluded that pediatric providers were more likely to consider the need for a structured transition process compared to adult providers (80% versus 47% respectively, p=0.001).

 

Barriers to a Successful Transition of Care Program:

The Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) developed and validated by Schwartz and colleagues^23,24 have identified seven major inter-related components of patients, parents and providers which impacts transition readiness and potential targets of intervention: patient development, knowledge, skills/efficacy to managing health, beliefs/expectations of the transition process, transition goals, relationships among patients, parents and providers, and psychosocial functioning regarding conditions and emotions related to the transition process; as well as pre-existing factors which are less modifiable but may still influence the transition process including socio-demographics/culture, insurance/access, health status, risks and problems due to complications of disease, and neurocognition/IQ. These components can either be barriers or potential facilitators for a successful transition of care.  Clinicians are encouraged to review these components early and regularly.

Achieving the goals of a successful transition of care program may be difficult due to limitations of resources or access to clinics with a structured program, poor readiness or preparation for the young adult to transition, limited communication between the pediatric gastroenterologists to referring adult providers, and suboptimal training in adolescent medicine for adult gastroenterologists^22,25,26.  Other barriers to the success of a transition includes the reluctance or inability to ‘let go’ by other key players involved in this process aside from the EAI, such as the parent or pediatric provider.  There are also inherent differences in treatment goals and health priorities from patient and pediatric provider to an adult provider^3,27.  Sebastian and colleagues²² reported lack of funding, time, support of services, training and too few of patients as the top five obstacles experienced among local pediatric and adult gastroenterologists for ability to deliver transition of care services.

 

Conclusions:

To date, although a number of transition clinic models currently exists, there is no standardized transition program in IBD. Future data-driven studies are needed to evaluate the tools and strategies currently used to help evaluate early readiness of the young adult, implement improved communication by the pediatric gastroenterologists and provide expansion in training for the adult providers in order to achieve a smooth transition and best outcomes for the EAI.

 

References:

1. Kelsen J and Baldassano RN.  Inflammatory bowel disease: the difference between children and adults.  Inflammatory Bowel Diseases 2009; 15:1438-1447.
2. Blum RW, Dale Garrell D, Hodgman CH, et al.  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 1993; 14:570-576.
3. Trivedi I, Keefer L.  The emerging adult with inflammatory bowel disease: Challenges and recommendations for the adult gastroenterologist.  Gastroenterology Research and Practice. 2015; 2015:260807. doi:10.1155/2015/260807.
4. Bollegala N and Nguyen GC.  Transitioning the Adolescent with IBD from Pediatric to Adult Care: A review of the literature.  Gastroenterology Research and Practice. Volume 2015: 7 pages.
5. Hait EJ, Barendse RM, Arnold JH, et al.  Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists.  Journal of Pediatric Gastroenterology and Nutrition 2008; 48:61-65.
6. Goodhand J, Dawson R, Hefferon M, et al.  Inflammatory bowel disease in young people: the case for transitional clinics. Inflamm Bowel Dis 2010; 16:947-952.
7. Vernier-Massouille G, Balde M, Salleron J, et al.  Natural history of pediatric Crohn’s disease: a population-based cohort study.  Gastroenterology 2008; 135:1106-1113.
8. Hartman C, Eliakim R, Shamir R.  Nutritional status and nutritional therapy in inflammatory bowel diseases.  World J Gastroenterol 2009; 15:2570-2578.
9. Greenley RN, Hommel KA, Nebel J, et al.  A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease.  J Pediatr Psychol 2010; 35:857-869.
10. Louis E. Epidemiology of the transition for early to late Crohn’s disease.  Digestive Diseases 2012; 30:376-379.
11. Bickston SJ, Waters HC, Dabbous O, et al.  Administrative claims analysis of all –cause annual costs of care and resource utilization by age category for ulcerative colitis patients.  Journal of Managed Care Pharmacy 2008; 14:352-362.
12. Kappelman MD, Rifas-Shiman SL, Porter CQ, et al.  Direct health care costs of Crohn’s disease and ulcerative colitis in US children and adults.  Gastroenterology 2008; 135:1907-1913.
13. Ananthakrishnan AN, McGinley EL, Saeian K, et al.  Trends in ambulatory and emergency room visits for inflammatory bowel diseases in the United States: 1994-2005.  American Journal of Gastroenterology 2010; 105:363-370.
14. Goodhand J, Hedin CR, Croft NM, et al.  Adolescents with IBD: the importance of structured transition care.  Journal of Crohn’s and Colitis 2011; 5:509-519.
15. Baldassano R, Ferry G, Griffiths A, et al.  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. Journal of Pediatric Gastroenterology and Nutrition 2002; 34:245-248.
16. Wood DL, Sawicki GS, Miller M, et al.  The transition readiness assessment questionnaire (TRAQ): its factor structure, reliability, and validity.  Acad Pediatr 2014; 14:415-422.
17. Benchimol EI, Walters TD, Kaufman M, et al.  Assessment of knowledge in adolescents with inflammatory bowel disease using a novel transition tool.  Inflamm Bowel Dis 2011; 17:1131-1117.
18. Morisky DE, Ang A, Krousel-Wood, M, et al.  Predictive Validity of a Medication Adherence Measure in an Outpatient Setting.  J Clin Hypertens 2008; 10:348-354.
19. Kroenke K, Spitzer R, Williams W.  The PHQ-9: Validity of a Brief Depression Severity Measure.  JGIM 2001; 16:606-616.
20. Escher JC.  Transition from pediatric to adult health care in inflammatory bowel disease.  Digestive Diseases 2009; 27:383-386.
21. Hait E, Arnold JH, Fishman LN.  Educate, communicate, anticipate – practical recommendations for transitioning adolescents with IBD to adult health care.  Inflamm Bowel Dis 2006; 12:70-73.
22. Sebastian S, Jenkins H, McCartney S, et al.  The requirements and barriers to successful transition of adolescents with inflammatory bowel disease: differing perceptions from a survey of adult and paediatric gastroenterologists.  Journal of Crohn’s and Colitis 2012; 6:830-844.
23. Schwartz LA, Tuchman L, Hobbie WL, et al.  A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions: transition readiness.  Child Care Health Dev 2011; 37:883-895.
24. Schwartz LA, Brumley LD, Tuchman LK, et al.  Stakeholder validation of a model for readiness for transition to adult care.  JAMA Pediatr 2013; 167:939-946.
25. Wright EK, Williams J, Andrews JM, et al.  Perspectives of paediatric and adult gastroenterologists on transfer and transition of adolescents with inflammatory bowel disease.  Intern Med J 2014; 44:490-496.
26. Fishman LN, Ziniel SI, Adrichem ME, et al.  Provider awareness alone does not improve transition readiness skills in adolescent patients with inflammatory bowel disease.  JPGN 2014; 59:221-224.
27. Cervesi C, Battistutta S, Martelossi S, et al.  Health priorities in adolescents with inflammatory bowel disease: physicians’ versus patients’ perspectives. J Pediatr Gastroenterol Nutr 2013; 57:39-42.