Priority 6 from the Mitochondrial Disease PSP

UNCERTAINTY: What are the psychological impacts of mitochondrial disease? What are the best ways to provide psychological support for people with mitochondrial disease and their families? (JLA PSP Priority 6)
Overall ranking 6
JLA question ID 0095/6
Explanatory note  Not available

Health Research Classification System category
Metabolic and Endocrine
Extra information provided by this PSP
Original uncertainty examples What are the best ways to treat the symptoms related to mitochondrial disease (including distress,~ PSYCHOLOGICAL help is completely non-existent but would be great help~ What is the impact of mitochondrial disease on your family? emotional, psychological?~ Can parents of mito children have a go to advocate to expedite access to technology and equipment. We are currently seeking private psychiatric consultation because we have been begging for antidepressants for 4 yrs. My daughter describes herself as broken. ~ which psychological therapies are effective ? ~ How can we best support people with depression? ~ Psychological support would be much appreciated, as it is difficult to live with this disease, and remain positive all of the time. ~ a frequent discussion on our online adult support group is the lack of psychological support for mitochondrial patients/families given that the condition can dramatically impact on daily life and leaves those affected feeling very isolated. If research could be done to show
Submitted by

 6 x Patients, 6 x Carers, 6 x H

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