Priority 18 from the Mitochondrial Disease PSP

UNCERTAINTY: What aspects of their health should be monitored over time and how often in people with mitochondrial disease? (JLA PSP Priority 18)
Overall ranking 18
JLA question ID 0095/18
Explanatory note  Not available

Health Research Classification System category Metabolic and Endocrine
Extra information provided by this PSP
Original uncertainty examples How my care can keep in line with the progression of the disease and take note of new developments ~ If epilepsy(or diabetes) is a known symptom of the condition-should base line investigations be carried out at diagnosis ~ When to have hearing/eye examinations. ~ how often should people have heart checks? ~ have annual heart checks ~ What do you do if you’re having a ‘mitochondrial episode’ more information on mitochondria- like checks for diabetes, kidney. ~ Would a checklist of procedures be helpful? E.g when to have blood tests and which ones, when is my cardiology check due etc ~ How often should be seen?
Submitted by 10 x Patient, 7 x Carer, 4 x Healthcare professional
PSP information
PSP unique ID 0095
PSP name Mitochondrial Disease
Total number of uncertainties identified by this PSP. 42  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 19 January 2020