Priority from the Bleeding Disorders PSP

UNCERTAINTY: What is the psychological impact and burden of being a person or a carer of a person, with an acquired or non-acquired bleeding disorder?
Overall ranking This was one of the 15 questions at the workshop that fell outside of the Top 10. These were not ranked in any order of priority
JLA question ID 0078/20
Explanatory note Inherited bleeding disorders ar a major burden on the individual and their familiy. We have concentrated on the physical aspects of the problem and not on the psychological stress. 
Evidence Cassis, FR, F Querol, A Forsyth, A Iorio, HIA Board. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia 18 (2012) e101-14.               Waldboth, V, C Patch, R Mahrer-Imhof, A Metcalfe. Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition. Int J Nurs Stud 62 (2016) 44-59.
Health Research Classification System category Blood
Extra information provided by this PSP
Original uncertainty examples Not available
Submitted by Not available
PSP information
PSP unique ID 0078
PSP name Bleeding Disorders
Total number of uncertainties identified by this PSP. 66 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 7 July 2018