At the Association of Cardiovascular Nursing & Allied Professions conference in June, Professor Tiny Jaarsma called for a pillar of self-care to be added to heart failure (HF) care guidelines.1 Taylor et al.2 agree that HF care needs an additional pillar and suggest cardiac rehabilitation. Currently, the HF pillars are focused on medications shown to improve the outcomes of people with heart failure with reduced ejection fraction (HFrEF),3 but other key non-pharmacological interventions are not considered. Also, the pillars of care do not provide guidance for people with heart failure with preserved ejection fraction (HFpEF), which represent 50% of the HF population.4 While these pillars focus on a single important aspect of care, they do not capture the totality of HF management or illness types. A focus on interventions to improve HF management is welcome but can obscure the challenges that treatment – as well as illness – impose on patients and their carers.
Burden of treatment is a concept that describes the balance between an individual’s capacity (their abilities and available resources) and the workload (tasks assigned by healthcare professionals) related to treating their illness.5 When workload exceeds capacity, engagement with self-care, quality of life and clinical outcomes worsen.6–9
Research in people with HF has shown a relationship between symptom severity and the difficulty reported with workload associated with their illness (treatment burden).10,11 Medications were reported as part of ‘troublesome self-care’.12 But it appears that the burden lies not in the act of taking the medications. In both Norway and the UK, those with HF rated the treatment burden associated with taking medications as very easy.10,11 The parallel qualitative research highlighted that those respondents reported treatment burden as influenced by factors like carers doing the work of medication management, or the high value assigned to that work. These helpful factors were not captured in the questionnaire used to measure treatment burden.13 In interviews, people with HF reported the high treatment burden involved in required interactions with inaccessible healthcare professionals, medication side effects, or in what taking those medications means.12,13
“I remember saying to a doctor do I have to keep taking these tablets? I’m fed up you know?” (B001 male 52 years)13
Self-care
Self-care is recommended in the guidelines as part of the management for HF,4 and has been shown to improve patient outcomes. However, clinicians often don’t consider the work required to manage complex treatment regimens, especially for older patients with multiple comorbidities. Those with HF are believed by clinicians to have poor self-care practices.14 This may relate to a lack of support and information provided by healthcare professionals (HCPs). In the UK, in a sample of all types of HF, around 50% of participants reported not being told about core self-care elements (diet or exercise) by any HCP. In those that had been advised to change their diet or begin exercise, these activities were also reported to cause greater treatment burden.10
In both the UK and Norway, people with HF reported higher treatment burden around activities related to interaction with healthcare services, e.g. accessing specialists, getting appointments, and primary-care follow-up.10,11
“I can’t remember ever seeing the same doctor twice. I wish I had, that would have felt much safer.” (P.15, NYHA II)12
Care pathways
Care pathways in healthcare systems,15 and the nature of clinical interactions within that system,7,12,13,16,17 can influence treatment burden. Insufficient, complex, and inaccessible healthcare services add significantly to patients’ treatment burden, likely contributing to poor outcomes.
The national heart failure audit in the UK,18 highlighted the deficiencies of current care pathways. Of patients with HFrEF admitted to hospital for HF exacerbation, only 56% are discharged on core HF medications, 32% receive cardiology follow-up, and 10% are referred to cardiac rehabilitation.18
The lack of established care pathways for people with HFpEF means half of the population have no routine access to specialist care.19,20 The lack of care pathways leads to misconceptions in both clinicians and patients. Clinicians have reported a lack of knowledge around the diagnosis, management, and illness perceptions related to HF.19,21,22 Patients have reported that they believe that their HF isn’t serious, that nothing can be done, or other things are more important.21
“I nursed my husband through Alzheimer’s […] So I just said to the doctor, forget it [pursuing HFpEF diagnosis], put it on hold.” (P006, female, 82 years)21
Shifting the pillars
There is a call for more HF specialists to meet the growing prevalence of HF,23 an acknowledgement that new ways of working are required,24 and that changes to HF care pathways are needed.25–27 The prevalence and demands of HF, including HFpEF, are expected to rise.18,28
The British Society of Heart Failure has announced a campaign ‘25in25’ to reduce the mortality of HF through prevention, early diagnosis, specialist care and patient empowerment.29 But to ensure any changes made by this campaign do not create further health inequalities or overwhelming burden on either patients or clinicians, the pillars of HF care require a shift from the current singular focus.
The focus of the current pillars of HF treatment is on the medical management of those with HFrEF, ignoring 50% of people with HF, self-care regimens, and deficits in the current care pathways. To reduce burden of treatment for people with HF a more inclusive framework for the management of those with HF is needed (figure 1). A foundation of sufficient numbers of knowledgeable HCPs is paramount to improving HF management. Healthcare providers should implement pillars of care for all HF types, but those pillars should include more than just medication optimisation.1,2,6 A broader view of HF care, which is more inclusive and considers the implicit burden created by HF and its treatment for both patients and clinicians, may be the key to future HF care (table 1).
Table 1. Description of pillars of care for heart failure
| Pillars of care | Burdens alleviated |
|---|---|
| Accessible pathways for diagnosis and management for all HF types |
|
| Optimal medical therapy for HFrEF (ACEi/ARNI, BB, MRA, SGLT2i) | |
| Optimal medical therapy for HFpEF (SGLT2i, MRA, comorbidity management) |
|
| Supported self-care regimens including cardiac rehabilitation | |
| Key: ACEi = angiotensin-converting enzyme inhibitor; ARNI = angiotensin-receptor/neprilysin inhibitor; BB = beta blocker; HF = heart failure; HFpEF = heart failure with preserved ejection fraction; HFrEF = heart failure with reduced ejection fraction; MRA = mineralocorticoid-receptor antagonist; SGLT2i = sodium-glucose cotransporter-2 inhibitor | |
These pillars will hold up the goal of improved outcomes and better quality of life for people with HF in a more patient-centred approach, while simultaneously reducing the treatment burden.
Conflicts of interest
None.
Funding
This work was supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) Wessex. The views expressed are those of the author and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.
Acknowledgements
Thank you to Professors Carl May and Christi Deaton for their comments on drafts of this editorial.
References
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