Priority 7 from the Bleeding Disorder PSP

UNCERTAINTY: What are the benefits of psychological and psychosocial strategies for support of individuals or families affected by bleeding disorders? (JLA PSP Priority 7)
Overall ranking 7
JLA question ID 0078/7
Explanatory note Although therapeutic strategies for bleeding disorders can be very effective they are not available for all patients. Moreover, even effective strategies can be difficult to accommodate and require limitations of activity and lifestyle. These factors can impact the life of the individual and their family, as can knowledge that the disorder is inherited. It is important to know whether psychological and psychosocial therapy can ameliorate these effects.
Evidence No specific data for haemophilia or bleeding disorders: Waldboth, V., et al. (2016). "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." International Journal of Nursing Studies 62: 44-59. 
Health Research Classification System category Blood
Extra information provided by this PSP
Original uncertainty examples How effective is the transition process between paediatric and adult services? ~ Does an education course including specialised nursing and Physiotherapy at the time of transfer from Paed to adult services improve patient compliance with regime, use of haemtrac and QoL?  ~ Can psychology improve treatment compliance and reduce bleeding episodes
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