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
Thus, transition-readiness assessment tools and transition-satisfaction scales are available for use in rheumatology transition processes.
Got Transition: The Center for Health Care Transition Improvement, a national center for healthcare transition, has developed a structured approach called the Six Core Elements of Health Care Transition (HCT), with sample tools and two transition measurement options.
For pediatric practices, the Six Core Elements of HCT consist of a transition policy, tracking and monitoring, readiness assessment, transition planning, transfer of care, and transfer completion. For adult providers, the Six Core Elements of HCT are slightly different and include a transition and young adult care policy, tracking and monitoring, orientation to adult practice, integration into adult approach to care, initial visit and ongoing care.
Recently, the American College of Physicians Council on Subspecialty Societies established a Pediatric to Adult Health Care Transitions Workgroup, which is charged with adapting the transition tools from Got Transition for primary care internal medicine and subspecialty providers and disseminating their use among their society’s members. The ACP plans to launch the set of transition tools developed by the subspecialty workgroups at its national internal medicine meeting in 2016 and on its website in 2016.
This call to action is significant in that it recognizes the critical role of adult subspecialty providers in the transition process and promotes more standardized transition processes. The ACR is one of the more than 10 subspecialty societies that have joined in this initiative. The ACR appointed a Transition Workgroup as part of this initiative, which includes adult and pediatric rheumatology providers (both ACR and Association of Rheumatology Health Professionals members), parents, a patient organization representative, and a young adult. The Workgroup developed recommendations and tools for ACR members involved in transitioning youth/young adults.
One of the authors of this paper (SA: [email protected]) is leading this Transition Workgroup for the ACR and can be contacted with questions.
Excerpted and adapted from:
White PH, Ardoin S. Transitioning wisely: Improving the connection from pediatric to adult health care. Arthritis Rheumatol. 2016 Apr;68(4):789–794.