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)
Overall ranking	3
JLA question ID	0098/03
Explanatory note	Whilst there is evidence on self-management for heart failure, there is no real focus on patient-related outcomes such as fatigue
Evidence	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	Cardiovascular

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?
Submitted by	9 x patients, 2 x health professionals, 1 x carer

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?

Submitted by

9 x patients, 2 x health professionals, 1 x carer

PSP information
PSP unique ID	0098
PSP name	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