Priority 13 from the Liver Glycogen Storage Disease (International) PSP

UNCERTAINTY: How can we improve the quality of life of patients with liver Glycogen Storage Disease?  (JLA PSP Priority 13)
Overall ranking 13
JLA question ID 0090/13
Explanatory note

The final workshop participants decided that quality of life is an important aspect that should be addressed in each of the top priorities for liver GSD.  
Evidence

For details of the evidence checked, please see the spreadsheet held on the JLA website.
Health Research Classification System category Metabolic and endocrine 
Extra information provided by this PSP
Original uncertainty examples How can we increase the quality of life of GSD I patients? ~ Quality of life impact on patients and their caregivers? Adult management type 1a to improve quality of life. 
Submitted by Patient, carer and healthcare professionals 
PSP information
PSP unique ID 0090
PSP name International Glycogen Storage Disease PSP
Total number of uncertainties identified by this PSP 72  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 24 May 2019