Priority 3 from the Advanced Heart Failure PSP
|UNCERTAINTY: What is the most empowering and effective education and self-management advice for people with advanced heart failure and carer? For example, dealing with fatigue. (JLA PSP Priority 3)
|JLA question ID
Whilst there is evidence on self-management for heart failure, there is no real focus on patient-related outcomes such as fatigue
Whilst there are studies/systematic reviews on self-management for heart failure, some are quite old (outside our 5 year search), the outcomes are quite diverse or on very specific issues (cognitive impairment/heart failure and education ). No real focus on patient-related outcomes such as fatigue
|Health Research Classification System category
|Extra information provided by this PSP
|Original uncertainty examples
|How do you inform patients about their medication in a way that empowers them to take it conscientiously and manage it well? ~ How can you support people from the point of diagnosis to understand and work through the emotional adjustments/loss that their 'life changing condition' will involve (bearing in mind each person's condition and adjustment is unique)?
~ So much of the impact is dependent upon ones own knowledge base at the time of diagnosis and subsequent 'downstream ‘ events in the heart disease / heart failure ~ Why does the process of assessment post diagnosis take so long? Why is HF treated as if it's all a fait accompli and you are where you are? I have felt as if I've had to get on with it myself, and if my wife and I hadn't had the good level of knowledge we have about nutrition and exercise, I'd be a great deal worse ~ What would support would you find helpful?
~ How do you find strength to cope with the ups and downs of your condition?
|9 x patients, 2 x health professionals, 1 x carer
|PSP unique ID
|Advanced Heart Failure
|Total number of uncertainties identified by this PSP.
|65 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
|Date of priority setting workshop
|13 February 2019