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 |
| Evidence |
https://pubmed.ncbi.nlm.nih.gov/28749475/ |
| 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 |