TranslatePriority 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://www.ncbi.nlm.nih.gov/pubmed/28476522 https://www.ncbi.nlm.nih.gov/pubmed/26856513 |
| 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 |
