Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis

Rheumatology (Oxford). 2005 Jun;44(6):806-12. doi: 10.1093/rheumatology/keh603. Epub 2005 Mar 15.

Abstract

Objectives: To define the transitional care workload of a multicentre cohort of adolescents with juvenile idiopathic arthritis (JIA) including disease, self-advocacy and vocational issues prior to the implementation of a transitional care programme.

Methods: Data were collected using questionnaires completed by senior clinicians, patients and parents in 10 UK paediatric rheumatology centres. Entry criteria for patients included a confirmed diagnosis of JIA for at least 6 months and an age of 11, 14 or 17 yr.

Results: Of 359 families invited to participate, 308 (85.79%) adolescents with JIA and 303 parents/guardians accepted. Of these, 19.5% had persistent oligoarthritis. Despite their imminent transfer to adult care, ongoing transitional issues were identified in the 17-yr-old cohort: 55.8% were still seeing the rheumatologists with their parent, 20% were not self-medicating, 68.5% had not had intra-articular injections under local anaesthetic and 14% had received no careers counselling. This age group also had significant disease-related issues; 54.6% had moderate to severe functional disability, 67.5% were still on disease-modifying anti-rheumatic drugs and, as a group, they had significantly greater pain than younger patients.

Conclusions: This study has objectively identified the transitional care workload facing paediatric and adult rheumatologists in terms of disease-related, self-advocacy and vocational issues. Outcome data following the implementation of a coordinated transitional care programme are awaited.

Publication types

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

MeSH terms

  • Adolescent
  • Age of Onset
  • Antirheumatic Agents / therapeutic use
  • Arthritis, Juvenile / drug therapy
  • Arthritis, Juvenile / physiopathology
  • Arthritis, Juvenile / therapy*
  • Child
  • Cohort Studies
  • Continuity of Patient Care / organization & administration*
  • Female
  • Humans
  • Joints / physiopathology
  • Male
  • Pain Measurement / methods
  • Parents
  • Personal Autonomy
  • Rehabilitation, Vocational / methods
  • Self Care / methods
  • Workload

Substances

  • Antirheumatic Agents