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 consent4,5. Unlike the pediatric model, the adult healthcare model is one which promotes individualized care and independence4,5. 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 dependence6,7. 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 treatment11-14.
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:
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 colleagues23,24 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 gastroenterologists22,25,26. 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 provider3,27. 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.
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.