What are the perceived therapy needs of adults with OI?
Research type
Research Study
Full title
What are the perceived therapy needs of adults living with Osteogenesis Imperfecta? A focus group study.
IRAS ID
275117
Contact name
Sophie Barlow
Contact email
Sponsor organisation
Royal National Orthopaedic Hospital NHS Trust
Clinicaltrials.gov Identifier
OI focus group Sophie Barlow, Osteogenesis Imperfecta focus group study
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
We are running a research study to find out what adults with Osteogenesis Imperfecta think about the therapy services they need. Osteogenesis Imperfecta(OI) is often called brittle bone disease. A person with OI inherits it from their parents, they are born with it and it affects them for their whole life. A person with OI does not have enough collagen in their bones and ligaments; this makes the bones more likely to break and the joints more likely to dislocate. Some people with OI have very few symptoms and others have severe physical disability. OI is categorised into different types. People with OI have previously reported problems in getting the right therapy healthcare for their needs such as physiotherapy, occupational therapy and psychology.
This study invites adults with Osteogenesis Imperfecta to take part in a group discussion. Adults with OI will be invited to take part. The discussion will be made possible by two researchers, one is a physiotherapist working with people with OI and one is a physiotherapy researcher. The group discussion will last up to two hours in total allowing for breaks. The group discussions will be organised in two separate group sessions. One group will be for people with type I OI; another group for people with type III or IV. The group discussion will be audio-recorded and typed. All personal information will remain anonymous and secure. The words spoken by the people in the group discussion will be analysed in detail by the researchers to find out if any themes come from the information. The information will be used to inform the future planning of healthcare services for people with OI. The results of this study will be published in a scientific journal and shared with other healthcare workers at a conference.REC name
Wales REC 6
REC reference
20/WA/0186
Date of REC Opinion
7 Jul 2020
REC opinion
Favourable Opinion