Abstract
Objectives
Juvenile Dermatomyositis is a rare, chronic autoimmune condition of childhood with known psychosocial implications. This study sought to establish current psychology support for children and young people across the United Kingdom with rheumatic conditions, with a specific focus on those with Juvenile Dermatomyositis.
Methods
Electronic surveys were distributed to the 15 centres that belong to the Juvenile Dermatomyositis Research Group in the United Kingdom, collecting responses from health care professionals in the fields of medicine, nursing and psychology.
Results
One hundred percent of professionals from medicine and nursing replied from all 15 centres. Of these, 7 (47%) did not have a named psychologist as part of their rheumatology team, despite the majority, 13 (87%) having more than 200 paediatric rheumatology patients. Of the remaining centres, hospital psychology provision varied considerably. When rating their service, only 3 (8%) out of 40 professionals scored their service as a 5, (where 1 is poor, 5 is excellent): there were wide discrepancies in these scores. Many challenges were discussed, including limited psychology provision, lack of time and difficulties of offering support across large geographical areas.
Conclusion
Many of the challenges discussed are applicable to other centres worldwide. Suggestions have been proposed which may help to improve the situation for children and young people with rheumatic conditions, including Juvenile Dermatomyositis. Based on these findings, we suggest that rheumatology teams maximise use of these data, to advocate and work towards more comprehensive psychology provision and support in their individual centres.