Priority 3 from the Rare Musculoskeletal Diseases in Adulthood PSP

UNCERTAINTY: What is the psychological impact of having a rare metabolic bone disorder and how can patients and their families best be supported? (JLA PSP Priority 3)
Overall ranking 3
JLA question ID 0076/3
Explanatory note Not available for this PSP
Evidence

None identified
Health Research Classification System category Musculoskeletal
Extra information provided by this PSP
Original uncertainty examples What is the psychosocial impact of fibrous dysplasia? ~ Does having OI and lots of injuries affect the brain etc do we become socially creatively different. . I read somewhere that traumatic incidents in early life have a long term affect. There's not a lot about the pychological impact of breaking 145 bones glfor instance. If you scanned our brains would we be different? ~ Long term effects on life - mental health
Submitted by Individual survey submissions categorised by Health or Social Care Professionals, Organisations representing people with rare musculoskeletal diseases, people with rare musculoskeletal diseases, relatives/carers/friends, Other.  For full details of the type of submitter for each individual question, please see the spreadsheet of data held on the JLA website.
PSP information
PSP unique ID 0076
PSP name Rare Musculoskeletal Diseases in Adulthood
Total number of uncertainties identified by this PSP. 39  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 18 June 2018