This survey provides a unique opportunity to examine HCT services from the perspective of youth themselves. There are two main findings from this study. First, based on youth report, we found low rates of discussing HCT issues by rheumatologists. Fewer than 4 in 10 youth recalled discussing health changes in adulthood, transfer to adult clinical care or maintaining health insurance coverage. Somewhat more encouraging, however, was that 6 in 10 youth reported that healthcare providers usually or always encouraged youth responsibility for healthcare. The validity of these findings is supported by the fact that they are remarkably consistent with reports from parents of children with arthritis . These results, together with those of other studies, suggest that the majority of youth living with arthritis are not discussing HCT even though it is considered best practice. The second key finding was that youth perceptions of autonomy support from their healthcare providers was associated with higher likelihood of discussing self-responsibility and discussing the changing healthcare needs of adults. Autonomy is an important psychosocial developmental task of adolescence . And autonomy support is increasingly recognized as an influential element of chronic care management. It appears that providers who youth perceive to be addressing this psychosocial task are the providers who are also providing developmentally appropriate healthcare services. Much of the HCT literature has advocated for clinical interventions that teach skills to youth living with chronic medical conditions, such as making appointments, reordering medications, and arranging the transfer of care to an adult service . But it may be that the strategy of asking providers to add more and specific health education to the long list of anticipatory guidance and health promotion tasks may be ineffective. Instead, a strategy that encourages providers to take a developmentally targeted approach to clinical work with youth health may result in more and perhaps more youth centered approaches to preparing for adulthood. Our finding of a strong association between provider support for autonomy and HCT discussions suggests that developmentally “in-tune” providers may be the best prepared to provide guidance about transition planning for youth living with JA.
Supporting autonomy in healthcare settings refers to the processes of care that enhance a person’s sense of personal choice of therapeutic plans and personal behaviors . Autonomy support is a key aspect of both patient centered care and adolescent development, and a key to successful healthcare transition. Healthcare providers can be autonomy supportive by seek to understand each adolescent’s experience of growing up with JIA, and involve them in identifying problems and resources, goals and strategies. The adolescent health interview strategy, HEADS , is one strategy that providers can use to become more patient centered and autonomy supportive. HEADS directs the adolescent health interview to areas of development and behavior that impact the current and future health of adolescents and which are likely to change over the transition to adulthood. HEADS topics include, but are not limited to Home, Education/Employment, Activities, Drugs, Depression, Sexuality, Safety. Conducting an interview in the HEADS order allows for exploration of topics in what are typically progressively more challenging topics. HEADS becomes a powerful autonomy support tool when the questions are used to trigger discussions of situations where an adolescent has successfully navigated a challenge, to elicit adolescent generated solutions and opportunities, and to model decision making. For example, the ‘home’ questions, “Tell me about your home and who you live with” become a patient centered, autonomy supportive transition intervention when they are expanded to include “How does having arthritis impact things around home?” or “How do you think that will change when you graduate high school?” or “Do you think having arthritis will affect your where you live when you go to college.” Autonomy support is enhance too, when adolescents have an opportunity to meet privately with their health care providers, and when they are assured confidentiality. Autonomy support in clinical settings with adolescents, especially those with chronic conditions, is challenging given the time constraints of visits and the focus on acute exacerbations and chronic management. Yet, the long term payoff from a program of autonomy support may be more efficient, effective and enjoyable patient communication and ultimately the successful transition to self-management and adult focused care.
The small sample size, sampling strategy and lack of sample heterogeneity limit the generalizability of our findings to the entire population of youth with arthritis. Our sample is primarily female, white and from two parent households and they all had access to a computer and the internet. It is likely that our sample represents, in general, a group with better access to resources than other youth with rheumatologic conditions. Thus we expect that our results may present a “best case” scenario in terms of the extent of healthcare transition counseling. Those youth with fewer resources may not be receiving as much in the way of transition services. In addition, results are derived from youth self-report and are not corroborated with medical records or provider reports. Thus, rates of counseling are subject to recall bias, and autonomy support is a perception of youth rather than an observed practice.
Further research on strategies for supporting young people during the process of HCT is necessary. Evidence to date has documented a strong need for HCT services, but there is little examination of the necessary components for effective programs . Our findings highlight the importance of supporting the development of autonomy in young people living with JA and suggest that support for autonomy is related to the HCT process. Future research should identify key markers of autonomy-supportiveness in clinical interactions between young people with JA and their providers as well as examine whether support for autonomy predicts successful HCT in youth who are at the stage where this transition is appropriate.
Study findings also point to an opportunity for providers and educators to focus on training current and future rheumatology professionals (and others) to be expert in delivering developmentally targeted, youth-centered care. Finally, training providers to engage in clinical interactions that cultivate autonomy may equip youth with the skills necessary to take control of their disease management and prepare for the transfer of care to adult providers.
Youth in the US report infrequent healthcare transition counseling from their rheumatologist.
Rheumatologists’ support for healthcare autonomy in young people is associated with HCT counseling
Improving clinician’s attention to the developmentally relevant autonomy supportive counseling may improve HCT counseling