The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis

Rheumatology (Oxford). 2007 Jan;46(1):161-8. doi: 10.1093/rheumatology/kel198. Epub 2006 Jun 20.


Objective: There is an extensive evidence base for the need of transitional care, but a paucity of robust outcome data. The aim of the study was to determine whether the quality of life of adolescents with juvenile idiopathic arthritis (JIA) could be improved by a co-ordinated, evidence-based programme of transitional care.

Methods: Adolescents with JIA aged 11, 14 and 17 yrs and their parents were recruited from 10 rheumatology centres in the UK. Data were collected at baseline, 6 and 12 months including core outcome variables. The primary outcome measure was health-related quality of life (HRQL): Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Secondary outcome measures included: knowledge, satisfaction, independent health behaviours and pre-vocational experience.

Results: Of the 359 families invited to participate, 308 (86%) adolescents and 303 (84%) parents accepted. A fifth of them had persistent oligoarthritis. Median disease duration was 5.7 (0-16) yrs. Compared with baseline values, significant improvements in JAQQ scores were reported for adolescent and parent ratings at 6 and 12 months and for most secondary outcome measures with no significant deteriorations between 6 and 12 months. Continuous improvement was observed for both adolescent and parent knowledge with significantly greater improvement in the younger age groups at 12 months (P = 0.002).

Conclusions: This study represents the first objective evaluation of an evidence-based transitional care programme and demonstrates that such care can potentially improve adolescents' HRQL.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adolescent Health Services / organization & administration*
  • Arthritis, Juvenile / psychology
  • Arthritis, Juvenile / rehabilitation*
  • Child
  • Continuity of Patient Care / organization & administration*
  • Delivery of Health Care, Integrated
  • Female
  • Follow-Up Studies
  • Health Behavior
  • Health Knowledge, Attitudes, Practice
  • Health Services Research
  • Humans
  • Male
  • Patient Satisfaction
  • Program Evaluation
  • Quality of Life*
  • Severity of Illness Index
  • Sickness Impact Profile*
  • Treatment Outcome