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.
Bibliographical noteFunding Information:
This work was supported by the United States Health Resources and Services Administration, Maternal and Child Health Bureau through the Leadership Education in Adolescent Health Fellowship Training Program, [T71-MC-00006] to CKW and BJM); Agency for Healthcare Research and Quality [K08-HS015511, to PBS] and from the University of Minnesota-Academic Health Center Faculty Research Development Program [to PBS, AWG, KJH] This work reflects the opinions of the authors and does not represent the opinions or influences of any of the funding agencies.
- Adolescent health
- Autonomy support
- Chronic condition
- Healthcare transition
- Young adult