Transitions in medical care can be high-risk periods due to the loss of continuity in care and worsening of medical conditions. Approximately one-quarter of the estimated 18 million adolescents aged 18–21 years in the U.S. have chronic conditions, including rheumatic diseases.2 As most youth with rheumatic and other chronic illnesses survive into adulthood, they, along with their healthier counterparts, need to transition from pediatric to adult healthcare providers. National surveys show that most parents, youth and young adults are unprepared for this change, and providers are looking for a systematic way to support their patients through this transition.3 Data show that without transition support, young adults have diminished health, compromised quality of care and increased healthcare costs.4
Unsatisfactory transitions can be attributed to many factors, including individual patient factors (e.g., limited self-management and self-advocacy skills, lack of family support) and system factors (e.g., changes in insurance coverage, communication gaps between health providers and health systems, lack of provider education about transition and access to care). Anecdotally, even when young adults “transfer” to the same provider within the same health system, gaps in care may occur.
Interventions in rheumatology practice can improve transition processes.
Surveys of young people with rheumatic disease indicate that they want independence in their care and information about the adult healthcare system. They are interested in knowing about the adult provider’s training and how to access adult health care.25,26
Approaches to improve transition in rheumatic and other diseases have included the development of young adult clinics, use of transition coordinators and interventions for youth and young adults to improve self-management skills. However, these programs are often disease specific, institution specific, small in size and difficult to generalize to larger populations.4
Assessments of rheumatology-specific transition-readiness skills are in development, including the Readiness for Adult Care in Rheumatology (RACER) questionnaire.34,35 Several non-disease-specific measures, such as the Transition Readiness Assessment Questionnaire (TRAQ), the TRxANSITION Scale and the Am I ON TRAC for Adult Care questionnaire, have been validated in youth with chronic disease.36-38 Another set of tested questions for assessing readiness involves asking patients to rate from 1 to 10 their interest and confidence in the desired outcome, such as surgery or weight reduction. These questions can be used in conjunction with a transition-readiness assessment instrument and have been widely used in motivational interviewing.39 A Mind the Gap scale has been developed to assess the satisfaction with transition to adult healthcare among patients with JIA and their families.40