As pediatric patients with chronic gastrointestinal (GI) disorders mature into adulthood, they require a seamless transition of care into an adult practice. Health care transition is more than a simple transfer of care to an adult provider; it is a purposeful, planned movement of young adults with chronic medical conditions from a child-centered health care system to adult-oriented one.1 Many adolescents with chronic GI disorders are at increased risk of developmental and psychosocial delays and depressive disorders.2-6 A successful transition program can mitigate some of the psychosocial impacts of chronic disorders by improving self-efficacy and autonomy.7
Despite the need for a well-planned process of transition, the idea is often met with angst by patients and their families. It can seem like abandonment to patients who have come to rely on their pediatric providers for their care and often look to the extended team of social workers and coordinators in the pediatric practice as their support system. The pediatric provider is best suited to address and allay these concerns while emphasizing the benefits of a well-planned transition of care. Since transition to adult care often coincides with other life events – such as moving away from home for a new job or to attend a university, assuming financial independence, or acquiring increased autonomy in life decisions – it is a particularly vulnerable time for young adults. During this phase, adherence to medical therapy may decline.8,9 Studies show that well-structured transition programs can improve adherence and ensure uninterrupted control of symptoms for chronic GI and non-GI disorders.10,11Timing of transition
Unlike other nations where legislation often mandates the age of transition to adult care, the United States leaves decisions about the appropriate time to transition to the discretion of individual patients and pediatricians. While the actual transfer of care may not happen until later, it is prudent to start planning when the patient is in early adolescence. The pediatric gastroenterologist should initiate the discussion with patients and caregivers when the child is 13-15 years of age.12,13 Since health care transition is a complex and lengthy process, it should be approached within a framework that is appropriate for the developmental stage of the patient and at a time when their disease is in remission.14
During the initial discussions, the idea of transition should be introduced to the patient and his or her family by emphasizing the benefits of improved self-management skills, adherence to therapy, and normalization of development. The pediatrician should encourage a greater sense of independence and self-reliance by seeing the patient alone for at least a portion of the clinic visit and encourage future independent visits.
Developing a transition plan
Studies have shown that a large proportion of patients with chronic GI disorders, such as inflammatory bowel disease (IBD), who are on the verge of transitioning to adult care do not demonstrate transition readiness.15-17 Interestingly, provider awareness of transition readiness itself does not improve self-management skills among patients.18 In fact, clinicians may not always assess health literacy–related readiness for transition accurately among their patients.19 Hence, it is essential to have a well-planned transition clinic that engages nurses, patient coordinators, and social workers; a coordinated, team-based approach can contribute significantly toward improving self-efficacy and transition readiness among patients with chronic GI and non-GI disorders.20-23 In fact, studies of chronic non-GI disorders show increased adherence to the therapy plan with transition models that incorporate didactic modules led by nurses, social workers, or dieticians.10,20,22Once the concept of transition of care has been introduced, it is prudent to devise a transition plan tailored to the specific needs and goals of the patient and family.24 Each plan should include who the adult provider will be, the tasks the adolescent must master before entering adult care, and how the care will be financed (because insurance coverage and options may change).25 A well-planned transition should enhance self-efficacy and self-management skills, increase knowledge of medical states, ensure adherence to therapy, and encourage independent decision making.12
Assessing transition readiness
Once the process of transitioning has been initiated, it is helpful to assess transition readiness at regular intervals. This will identify gaps in knowledge and inform appropriate interventions for individual patients. There are several questionnaires that can be administered at regular intervals and be made an integral part of routine clinic visits for adolescent patients. These assessments are now billable under CPT Code 99420 (administration and interpretation of health risk assessment). A standardized instrument should be used and the results recorded in the clinical encounter to ensure billing compliance.