Birmingham hospital to take part in major study to help teenagers with arthritis
BIRMINGHAM Children's Hospital is taking part in major multi-centre, multi-agency study which is set to benefit thousands of teenagers throughout the UK who suffer from the potentially crippling condition of arthritis.
The study will be the largest long-term study following adolescents with arthritis into adulthood ever to be carried out.
The three-year project has been funded by a grant of £247,416 by medical research charity the Arthritis Research Campaign. It will be run by the British Paediatric Rheumatology Group; the Children's Chronic Arthritis Association, a charity run for families of children with arthritis; and the Lady Hoare Trust, a charity which provide social workers for disabled children.
Rheumatology services aimed specifically at teenage patients are under-developed, with many young people having to face the switch from a children's clinic to an adult clinic without a satisfactory transition period.
Although the study is still in its early consultation stages, it is expected that up to 500 young people aged between 11 and 19 in between 10 and 12 UK centres will take part over the next three years. Recruitment will begin in October 2000.
Tauny Southwood, convenor of the BPRG, and Professor of Paediatric Rheumatology and consultant rheumatologist at Birmingham Children's Hospital, said the aim was to greatly improve the quality of life with young people with juvenile chronic arthritis.
The study aims to improve disease education and general health education among young people with arthritis; help them become more in control of their own health care; help them make the transition from living with their parents to living independently; and to make the transition from school to further education.
"There is a clear problem with employment for young people with JCA in that they are three times more likely to be unemployed than able-bodied young people," said Professor Southwood. "So we aim to bring careers advisers and social workers into clinics to offer practical advice and counselling, and strengthen liaison with schools.
"We also want the young patients to be more actively involved in decisions about their treatment and to know more about their condition. There also needs to be better and earlier sex education – there's a growing awareness that sexual issues are important for disabled people."
In Birmingham, a local co-ordinator, probably an occupational therapist, will be appointed to work with the young person and their family and to liaise with the multi-disciplinary health team.
