Abstract
BackgroundTo increase understanding of the healthcare transition (HCT) process for young people living with Juvenile Idopathic Arthritis (JIA) by examining: 1) the extent to which youth report discussing HCT topics with their rheumatologist and 2) the association between youth perceptions of autonomy support from their rheumatologist and HCT discussions.MethodsData are from an online survey of youth in the United States with rheumatologic conditions (n= 134). HCT discussion was measured by 4 questions from the National Survey of Children with Special Health Care Needs. Youth perception of autonomy support was measured using a validated 6-item scale.ResultsOne third of the youth (33.7%) reported talking to their rheumatologist about transferring to adult medicine. Less than half (40.8%) of respondents talked with their rheumatologist about adult healthcare needs, and less than a quarter (22.0%) discussed acquiring health insurance as an adult. Nearly two-thirds of respondents (62.7%) reported that their rheumatologist usually/always encourages self-care responsibility. Multivariate analyses revealed significant associations between rheumatologist support for youth autonomy and HCT counseling.ConclusionThe low frequency of HCT counseling reported indicates a continuing need to increase awareness among rheumatologist in the USA. The strong associations between rheumatologist’s support for youth autonomy and HCT counseling suggest that developmentally “in-tune” providers may deliver the best guidance about transition planning for youth living with arthritis.
Highlights
To increase understanding of the healthcare transition (HCT) process for young people living with Juvenile Idopathic Arthritis (JIA) by examining: 1) the extent to which youth report discussing healthcare transition” (HCT) topics with their rheumatologist and 2) the association between youth perceptions of autonomy support from their rheumatologist and HCT discussions
The biologic disease-modifying antirheumatic drugs have resulted in marked reductions in disease activity and medication side effects for adolescents growing up with rheumatologic conditions like Juvenile Idiopathic Arthritis (JIA) [1]
Autonomy support may be an important element of HCT counseling as it is identified as a central element of behavior change counseling and effective health behavior interventions [13,14]
Summary
To increase understanding of the healthcare transition (HCT) process for young people living with Juvenile Idopathic Arthritis (JIA) by examining: 1) the extent to which youth report discussing HCT topics with their rheumatologist and 2) the association between youth perceptions of autonomy support from their rheumatologist and HCT discussions. The biologic disease-modifying antirheumatic drugs have resulted in marked reductions in disease activity and medication side effects for adolescents growing up with rheumatologic conditions like Juvenile Idiopathic Arthritis (JIA) [1]. Despite these advances, no cure exists for these conditions and most adolescents can expect to experience adulthood with the need for intensive and expensive medical care [2,3,4]. No cure exists for these conditions and most adolescents can expect to experience adulthood with the need for intensive and expensive medical care [2,3,4] Preparing youth and their families for the transition to adulthood and from. Autonomy support may be an important element of HCT counseling as it is identified as a central element of behavior change counseling and effective health behavior interventions [13,14]
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