Pediatric Rheumatology Online Journal → June 2003 → Miscellaneous Topics→ Abstract #76
                                                                August 2003 → Health-Care Delivery → Abstract #76

A MULTI-CENTRE AUDIT OF THE TRANSFER PROVISIONS MADE FOR YOUNG PEOPLE WITH JUVENILE IDIOPATHIC ARTHRITIS (JIA)

J. E. McDonagh,¹ L. P. Robertson,² T. R. Southwood,¹ K. L. Shaw,¹ on Behalf of the BPRG, CCAA, LHT & YAC

¹Institute of Child Health, Diana, Princess of Wales Children's Hospital, Birmingham, United Kingdom; ²Department of Rheumatology, Bristol Royal Infirmary, Bristol, United Kingdom

Purpose
Young people with JIA and their parents report that transfer to adult services can be distressing and call for increased preparation. The purpose of this audit was to assess the provisions made for the transfer of patients with JIA to adult rheumatology clinics and to gain baseline data to evaluate a UK Programme of Transitional Care.
Methods
A case-note audit of the last 20 patients transferred to adult rheumatology care was conducted in participating centres (n=10). Analyses used simple descriptive statistics.
Results
Data is available for 8 centres and includes 135 patients (71% female). Most frequent diagnoses were rheumatoid factor negative polyarthritis (24.%), systemic arthritis (18%) and extended oligoarthritis (15%). Mean age at disease onset was 8 ± 4.5yrs, at first discussion of transition 18 ± 6yrs and at transfer 18.9 ± 5.6yrs. Consultants were involved in 85% of transfers. Involvement of individual multidisciplinary professionals ranged from 3-58%. Few patients had a transitional plan (3%) and only 2% received written information about transition. Documentation of education appeared in 58% of cases, careers 45%, exercise 39%, home/social support 25%, peers/social life 21%, driving 16%, alcohol 15%, sexual health 12%, weight/diet 10%, future independent utilisation of health services 8%, drugs/cigarettes 5%, and dental care 4%. Parent's needs were rarely documented (1%). Only 16% of patients had visited clinics independently and only 15% of those requiring joint injections had done so without sedation. A medical summary was sent to adult services in 73% of cases and 20% of adult rheumatologists copied the first clinic letter to the pediatric team.
Conclusions
Documentation of transitional care was limited and supported the view that transfer is ill prepared. While lack of documentation does not necessarily imply lack of action, it is important for effective multidisciplinary working. Re-audit is planned for June 2003.