Priority 15 from the Advanced Heart Failure PSP

UNCERTAINTY: How do health professionals explain how advanced heart failure progresses and what that means for patients’ symptoms?  (JLA PSP Priority 15)
Overall ranking 15
JLA question ID 0098/15
Explanatory note

No significant evidence for people with advanced heart failure


 No definite evidence

Health Research Classification System category  Cardiovascular
Extra information provided by this PSP
Original uncertainty examples How likely are my symptoms to get worse/better? ~ How can we better prognosticate in patients with advanced heart failure in light of new treatments and interventions. ~ Will my symptoms be an indicator that my condition is deteriorating?  ~ How do we diagnose/predict end of life in HF? TO guide when to get palliative care support, reduce treatment burden, prepare relatives, etc. ~ What are the most reliable prognostic parameters? ~ Nature of symptom burden, particularly how it changes over the course of disease ~ What is the prevalence of symptoms What are the priority ones which have greatest impact ~ Are patients given enough information about what symptoms to expect such as leg swelling, breathlessness, cough?  pts often present with a cough or leg swelling and they don't seem to know this is a symptom of their heart failure?
Submitted by  7 x health professionals, 1 x patient
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