Methods: Data from an online survey of youth with rheumatologic conditions (n=134) were analyzed. Respondents were recruited through pediatric rheumatology clinics, community organizations, and social media sites to achieve a convenience sample of those with and without access to sub-specialty care. Autonomy support was measured using 6 items from the Healthcare Climate Questionnaire, dichotomized into high and low groups using a median split. Adolescent-structured care was assessed with 2 questions from the Young Adult Healthcare Survey asking about privacy and confidentiality in the provision of care. Whether respondents had discussed health care transition with their health care provider was measured with 2 questions from the National Survey of Children with Special Health Care Needs: the first asked if youth had talked with their rheumatologist about eventually seeing an adult provider and the second asked if youth had talked with a health care provider about health care needs as they become an adult. Descriptive, bivariate, and multivariate analyses were conducted to identify significant associations between variables.
Results: Overall, only one third of youth reported talking to their rheumatologist about transferring to adult medicine and less than half had talked with any health care provider about their health care needs as they become an adult. Forty percent reported being seen privately by a rheumatologist or being informed about confidentiality. Youth receiving adolescent-structured care were significantly more likely than those who did not receive adolescent-structured care to report high levels of autonomy support (OR 2.42, p=.02). Also, youth with high levels of autonomy support were significantly more likely than those with low levels to report talking with a health care provider about health care needs as they become adults (OR 2.56, p=.01). No significant associations were found between adolescent-structured care and either health care transfer (OR 1.54, p=.30) or adult transition (OR 1.35, p=.39). In addition, no significant associations were found between autonomy support and health care transfer (OR 1.63, p=.26).
Conclusions and Implications: Among this small youth sample, less than half are receiving transition services and adolescent-structured care. Findings also indicate that autonomy support from health care providers may play a role in the development of transition planning skills for youth living with arthritis.
