Condition: Rheumatic Diseases · Rheumatic Disorder · Rheumatologic Conditions (JRA,Lupus) · Sponsor: University of the West of England
Assessing the impact of glucocorticoids in children and young people with rheumatic conditions, to develop a patient reported outcome measure (PROM). Glucocorticoids, also known as steroids, are a very effective medication for the treatment of rheumatological conditions. They are used to reduce inflammation, pain and damage to organs. However, steroids can have some unwanted side effects, such as, increased weight, skin changes, feeling anxious, delayed puberty, diabetes and loss of bone mass. These side effects can therefore impact children and young people's health related quality of life (HRQoL). The investigators would like to create a new questionnaire for children and young people (CYP) who take steroids due to their rheumatological condition. The questionnaire, called a Patient Reported Outcome Measure, (PROM), will measure how steroids are affecting CYP. The first step in creating the questionnaire is to talk to children, young people and their parents/guardians about their experiences of taking steroids. The investigators plan to do this in focus groups, with people around the same age. The second step will then be to take everything people said in the focus group to create the questions in the questionnaire. Cognitive interviewing will then be used in a structured one on one interview to test for relevance, clarity and understanding of the questions. Children, young people and their parents/guardians will be involved throughout the research. Children and young pe…
This description comes directly from the study's public registry record.
Emily Barnes · +447747560680 · emily4.barnes@live.uwe.ac.uk
Dr Jo Robson · +441173281973 · jo.robson@uwe.ac.uk
Always discuss trial participation with your own doctor first.
| Bristol Royal Hospital for Children | Bristol, North Somerset, United Kingdom | Recruiting |
| Royal Hospital for children Glasgow | Glasgow, North Somerset, United Kingdom | Recruiting |
| Alder Hey Hospital | Liverpool, North Somerset, United Kingdom | Recruiting |
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Source record: clinicaltrials.gov/study/NCT07350395