Juvenile dermatomyositis
The BPSU surveillance aimed to: estimate the incidence of juvenile dermatomyositis, investigate if there was clustering of cases in time and place, evaluate the presenting features, the delay between onset and diagnosis and document initial drug treatment. The BPSU survey enabled the estimation of the incidence of juvenile dermatomyositis in the United Kingdom for the first time. It also allowed a picture to emerge of the presentation and treatment of the disease.
Lead investigator
Prof D Candy
About the study
When this study occurred, parenteral nutrition was widely available for managing intestinal failure in children. In those with protracted intestinal failure, prolonged administration was now feasible. Desirably, in these circumstances, this administration would occur at home.
Home administration of parenteral nutrition was associated with a better quality of life for the patient. There was also a reduced rate of infection of the administration line. And it was cheaper for the health services. It took place if adequate facilities for its support were available in the community. The development of support services for medical management in the community was important for health services at the time.
To help quantify the need for support services for the home administration of parenteral nutrition, the research team looked into children receiving parenteral nutrition for a prolonged period in the United Kingdom and the Republic of Ireland.
For the study, prolonged was defined as a period of greater than six weeks, as it was unlikely that parenteral nutrition would be under consideration earlier than this. Factors relating to suitability for home administration of parenteral nutrition were: expectation of stopping parenteral nutrition shortly, associated medical problems, poor housing or lack of facilities, family medical or social problems, family literacy or numeracy problems, and parental confidence or competence.
The team found that the majority of children on prolonged parenteral nutrition, who were suitable for home treatment, were at home. But awareness of the availability of this treatment should have been more universal.
Duration
February 1992 – April 1992
Published papers
Support group