Background/Purpose: A NIH focus group study found that adolescents and young adults (AYA) with active disease relied heavily on their parents for disease management. It was reported that increased parental involvement demonstrated less AYA control and responsibility. It was further recommended to reduce the role of the parent in order to enable the AYA to manage the disease into adulthood^. (Huang, JS et al.  Transition to Adult Care: Systematic Assessment of Adolescents with Chronic Illnesses and their Medical Teams, J Ped, 159;6, Dec 2011).  This study examines parental involvement and AYA self-management of healthcare responsibilities and decision making in pediatric rheumatology.

Methods: A cross sectional study of 42 adolescent/young adult patients ages 14-25 yrs with a childhood onset rheumatic disease and 32 of their parents were prospectively recruited from consecutive ambulatory visits at single center urban academic institution. Both groups were asked to complete separate surveys that assessed transition readiness perception, parental involvement, and AYA management skills.  Healthcare providers were asked to complete a questionnaire assessing age appropriate parental involvement at each encounter. Patient and parent demographics were obtained.

Results: There were 23 AYAs between ages 13-17 (16 yrs, SD 0.93) and 17 AYAs between 18-25 (20 yrs, SD 1.98). AYA self-reported ethnicity showed 38% (16) were white, 21% (9) were Hispanic, and 7% (3) were Hispanic.  Diagnosis composed of 55% (23) JIA, followed by 19% (8) SLE.  Of the parents, 64% (27) were mothers and 48% (20) were white. 

Table 1 demonstrates that parents agreed that AYA self-management was somewhat/very important.  Both groups of parents reported to be somewhat/very involved in the patient’s health and consistently performed most tasks for the AYA. (Figure 1a). Yet 53% of all parents answered that AYA should self-manage between ages 16-18.  Both adolescents (87%) and young adults (84%) also agreed that self-management was somewhat/very important. There was a discrepancy between young adult involvement (89%) and the tasks performed by the AYA (Figure 1b).

Physicians perceived a progression in decision-making from the adolescent to young adults, but reported that only a minority of young adults (41%) demonstrated independent healthcare responsibility again. AYAs and parents perceived increased parental and less AYA decision-making from adolescent to young adult (Figure 1c).  

Conclusion: In this cohort of childhood onset rheumatic diseases there was a failure to demonstrate progress towards independence from the adolescent to the YA cohorts. The majority of patients over age 18 were not independent in making health care decisions and one third of young adults took over health related specific tasks from their parents. Further prospective longitudinal study is needed to determine the optimal goals and methods to successfully achieve health care independence.