Heart failure can drastically affect how people live their lives, limiting their activity levels and causing major changes to daily life. However, quality of life is not always considered when evaluating treatment effectiveness and devising care plans. A report based on a major pan-European survey of people living with heart failure found that fewer than 15% routinely discussed their quality of life with their care teams. Steven Macari, founder of Avec and co-author of the report, says that the findings ‘reveal the necessity to listen more closely to patients’ needs and their desire to improve their quality of life.’ Mr Macari hopes that the survey will lead to greater collaboration between people living with heart failure and their care teams, and greater recognition of the importance of quality of life among decision-makers.
Quality of life urgently needs to receive more consideration in research, strategic plans and delivery of care, so that people living with heart failure can get the support they need to maintain happy and fulfilling lives.
Health-related quality of life usually refers to a person’s subjective experience of how a condition and its treatment affect their wellbeing, including impact on the social, emotional and physical aspects of their lives.
People living with heart failure often have markedly worse quality of life than both the general population and people living with other chronic diseases. Symptoms such as swelling in the legs, chest pain, fatigue and breathlessness can make day-to-day living very difficult. From going to work to going on holiday, from playing sports to grocery shopping and driving, heart failure can seriously affect all aspects of a person’s life. One study of how living with heart failure affects relationships found a decline in shared hobbies, shifts in household roles and responsibilities, and detrimental effects on sexual intimacy.
As well as extending life expectancy, many people with heart failure find it equally or even more important to consider how a treatment impacts their quality of life. The side effects of different treatments, which can include headaches, dizziness and dehydration, and the time spent monitoring their condition may be important when it comes to decisions about care. People’s priority is not only living a longer life, but ensuring their life is enjoyable, fulfilling and meaningful.
As quality of life is so important for individuals, it is vital that care teams consider the daily experience of treatments and how they align with longer-term care plans. For instance, for a person planning travel, diuretics are likely not appropriate at certain times.
As every person with heart failure is unique, the treatments and interventions required to improve their quality of life will differ – and so, an exercise rehabilitation programme which improves one person’s wellbeing may not be indicated for another due to too much discomfort. This is also important for people living with other conditions as well as heart failure, such as iron deficiency or diabetes, as interactions with other treatments will have to be considered. For this reason, personalised care should be prioritised in treatment plans.
Mortality, morbidity and hospitalisations are the most common factors used to evaluate the effectiveness of new treatments for heart failure, whereas quality of life data and patient-reported outcomes are often not used.
Patient-reported outcome measures (PROMs) evaluate how satisfied individuals are with the treatment and their experience of it. They should be standard practice in clinical trials and evaluations of treatments and care models.
In recent years, there have been exciting developments in co-design, where patient outcomes and quality of life are considered from the start in researching and designing interventions. For instance, a team at an Australian hospital co-designed an app to help people manage their self-care after leaving hospital.
Despite the personal burden the syndrome can pose, it is possible to live well with heart failure. With adequate support for self-management from care teams but also from loved ones and the wider society, people can markedly improve their lives – whether that means spending more time with their grandchildren or even running marathons.
Progressive heart failure policy should have quality of life at its centre to make sure that research and care are led by what is most meaningful and important to the person. Including quality of life in conversations about care and making it a focus of clinical studies are crucial first steps.
To learn more about how we can make sure policymakers address quality of life, register for the Heart Failure Policy Summit 2022. In the fourth and final session, taking place on Wednesday 16 November, we will hear from speakers who are transforming healthcare to put the person at the centre. They will include Nick Hartshorne-Evans and Steven Macari, two of the patient advocate co-authors of the European quality of life survey, ‘Heart failure – an inconvenient truth’
Blog post by Francesca Butler, Project Officer, Heart Failure Policy Network