Youth report of healthcare transition counseling and autonomy support from their rheumatologist.

BACKGROUND: 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. METHODS: Data 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. RESULTS: One 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. CONCLUSION: The 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.

Living with juvenile arthritis: adolescents' challenges and experiences.

INTRODUCTION: The objective of this study was to identify challenges that teens experience while living with juvenile arthritis (JA) from the perspective of youth and young adults with JA. METHOD: Focus group interviews were conducted with youth (aged 14-21 years) and young adults (aged 22-29 years) with JA using a semi-structured interview protocol that included questions about the challenges adolescents experience while living with arthritis. RESULTS: Challenges of living with JA were identified in the areas of (a) health care, (b) relationships, (c) school, (d) physical, and (e) individual. However, distinct perspectives emerged between youth and young adult participants. For youth, challenges were situated in present time and focused heavily on interpersonal situations. Alternatively, young adults reported challenges that illuminated their experiences of movement from adolescence into young adulthood (e.g., independently managing their JA and disclosure to dating partners). DISCUSSION: Findings from this study display complex and multifaceted experiences that teens face while living with arthritis. Experiences associated with arthritis were not limited to being described as health care-related challenges; rather, arthritis permeates multiple contexts in adolescents' lives.