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Open Access Research

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

Courtney Kellerman Wells14, Barbara J McMorris2, Keith J Horvath3, Ann W Garwick1 and Peter B Scal45*

Author Affiliations

1 University of Minnesota, School of Social Work, Minneapolis, MN, USA

2 University of Minnesota, School of Nursing, Minneapolis, MN, USA

3 University of Minnesota, School of Public Health, Minneapolis, MN, USA

4 University of Minnesota, School of Medicine, Minneapolis, MN, USA

5 Department of Pediatrics, University of Minnesota, 717 Delaware St. SE, Room 359, Minneapolis, MN, 55455, USA

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Pediatric Rheumatology 2012, 10:36  doi:10.1186/1546-0096-10-36

Published: 14 November 2012

Abstract

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.

Keywords:
Healthcare transition; Autonomy support; Adolescent health; Young adult; Arthritis; Counseling; Chronic condition