Advanced Heart Failure Top 10 priorities

    1. Which treatments have the biggest impact on the quality of life of people with advanced heart failure?
    2. What amount and type of exercise is safe and effective for people with advanced heart failure?
    3. 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.
    4. How can the work of heart failure charities be better integrated with NHS services to optimise the care of people with advanced heart failure?
    5. Which approaches, in additional to standard therapies, are effective in supporting breathless people with advanced heart failure?
    6. How do we break down barriers for patients with advanced heart failure, carers and health professionals to enable talking about end of life care?
    7. What are the benefits of asking a person with advanced heart failure ‘what is important to them’?
    8. What is the most effective way to use diuretics in advanced heart failure, with respect to, fluid overload, kidney function, survival & quality of life?
    9. How can advanced heart failure patients and professionals be helped to communicate about patients’ symptoms that are difficult to express such as anxiety and low mood?
    10. What support would be most effective for carers of people with advanced heart failure for example support groups?

The following questions were also discussed and put in order of priority at the workshop:

    1. Which approaches are effective in reducing fatigue in people with advanced heart failure?
    2. Can the long-term care needs of people with advanced heart failure be better met by closer co-operation between heart failure and palliative care teams?
    3. How can healthcare professionals manage the expectations of people with advanced heart failure? For example, uncertainty
    4. Which approaches are effective in helping people with advanced heart failure to have a good night’s sleep?
    5. How do health professionals explain how advanced heart failure progresses and what that means for patients’ symptoms?
    6. What percentage of people with advanced heart failure have advanced care plan (ACP) discussions?
    7. How can we distinguish between co-morbidities (other chronic conditions) for example: COPD/chest infection & advanced heart failure?
    8. How do people get support to continue as their heart failure becomes more advanced?
    9. Which healthcare professional is most appropriate for people with advanced heart failure to consult with at each stage of their disease journey?
    10. Do health professionals understand the life / activity / functional consequences of each medicine?
    11. Is there an ‘App’ to help people manage advanced heart failure?
    12. How do health professionals best manage chronic kidney disease and advanced heart failure?  a. What medication is best to use? b. How to manage diuretics c. Is metolazone or iv furosemide better?
    13. How do health professionals respond when people with advanced heart failure ask ‘When am I going to die? Are we talking days, months, years? What about sudden death?
    14. What is the optimum time to discuss deactivation of ICDs (implants) and discuss palliative care with people with advanced heart failure?
    15. What helps with symptoms from peripheral oedema experienced by people with advanced heart failure? For example, massage, exercise.

Document downloads

For full details of all of the questions identified by this PSP, please see the document below.