Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis.
OBJECTIVE
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.
Shaw
K L
KL
Institute of Child Health, Diana, Princess of Wales Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.
Southwood
T R
TR
McDonagh
J E
JE
D000293:Adolescent; D017668:Age of Onset; D018501:Antirheumatic Agents / Q000627:therapeutic use; D001171:Arthritis, Juvenile / Q000188:drug therapy / Q000503:physiopathology / Q000628:therapy*; D002648:Child; D015331:Cohort Studies; D003266:Continuity of Patient Care / Q000458:organization & administration*; D005260:Female; D006801:Humans; D007596:Joints / Q000503:physiopathology; D008297:Male; D010147:Pain Measurement / Q000379:methods; D010290:Parents; D026684:Personal Autonomy; D012050:Rehabilitation, Vocational / Q000379:methods; D012648:Self Care / Q000379:methods; D016526:Workload
D018501:Antirheumatic Agents