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
Evidence	https://pubmed.ncbi.nlm.nih.gov/28476522%20 https://pubmed.ncbi.nlm.nih.gov/26856513%20 https://pubmed.ncbi.nlm.nih.gov/26391741%20 https://www.ncbi.nlm.nih.gov/pubmed/23529909 https://pubmed.ncbi.nlm.nih.gov/23398775%20%20 https://pubmed.ncbi.nlm.nih.gov/23430944%20 https://pubmed.ncbi.nlm.nih.gov/20573558/ https://pubmed.ncbi.nlm.nih.gov/20304331%20 https://pubmed.ncbi.nlm.nih.gov/19397532/
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

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