Self-care in heart failure: time to update measures and assess cognitive capacity?

This invited commentary refers to ‘Affective symptoms, cognitive function and self-care behaviours in adults with heart failure according to ejection fraction phenotype’. by M. Jędrzejczyk et al., https://doi.org/10.1093/eurjcn/zvaf112. In November 2025, the Lancet published a commentary on the evolving spectrum of cardiovascular diseases (CVD).1 The authors drew together a series of large prospective observational studies and remarked that, collectively, these studies are signalling a change in the global case mix of CVD. Notably, the rates of acute coronary syndromes and stroke appear to be reducing, whilst conditions like cardiac arrhythmias, valve diseases, and venous thromboembolism are experiencing a surge.1 A closer look at the distribution shows marked stability for heart failure (16% of all CVDs in 2000–02, rising to 17% in 2017–19).1 However it is likely heart failure incidence will correspondingly increase given the intimate relationship between heart failure, arrythmias2 and valve disease.3 Regardless of your ‘read’ of these statistics, it is probably safe to say there is still much work to be done to optimise heart failure prevention and clinical outcomes. In the European Journal of Cardiovascular Nursing, a recent paper has presented some interesting correlations that could, if substantiated in a larger sample, signal an area where improvements could be made.4 Using multiple linear regression models, Jędrzejczyk et al. were able to examine differences between heart failure phenotypes [reduced (HFrEF), mildly reduced and preserved ejection fraction (HFpEF)], affective symptoms (anxiety and depression), cognitive function and self-care behaviours in 250 patients with acute decompensated heart failure. The authors used validated outcome tools to obtain their measures for affective symptoms (Hospital Anxiety and Depression Scale5 and the Patient Health Questionnaire-96); cognition [Mini-Mental State Examination (MMSE)7 and the Montreal Cognitive Assessment8]; and self-care behaviour [European Heart Failure Self-Care Behaviour Scale (EHFSCBS-9)9]. Appropriate statistical test were leveraged, suitable statistical adjustments were made and a measured interpretation employed. Thus, the finding that there is a significant negative correlation (r = −0.299, P = 0.003) between MMSE scores and EHFScBS-9 in HFpEF is intriguing. The authors postulate this result as suggestive that better cognitive function results in better self-care behaviours, and vice versa. This interpretation is presented judiciously as the authors recognize that the data was not normally distributed, the mean scores between HFrEF (median = 28.0, interquartile range [IQR] 27.0–29.0) and HFpEF (median = 28.0, IQR 26.0–29.0) were ostensively the same and not indicative of mild cognitive impairment according to established MMSE cut-points.10 Lastly, the significance was not maintained when adjusted for ‘key demographic and clinical factors’. That self-care is superiorly performed or achieved when a person has better cognitive function is perhaps not surprising. Cognitive impairment is fairly common in HFpEF, a likely consequence of poor cardiac output and/or cerebral hypoperfusion, and is often exacerbated by the significant comorbidity burden that accompanies HFpEF.11 Impaired cognitive function can affect attention, reasoning, planning and executive functioning,12 skills that are necessary for example in tracking body weight to identify possible fluid retention. In addition to requiring cognitive reserve, self-care can be overall very demanding and difficult to perform, particularly when a holistic lens is applied.13 One of the largest reviews to date across all heart failure phenotypes determined that symptoms of heart failure ‘predominately act to impede patients’ efforts to engage in self-care’.14 An analysis of HFpEF specifically indicated that burden of treatment and burden of care were such that people with HFpEF frequently found themselves in a ‘situational tipping point’ whereby their capacity (physical ability) to perform self-care work was so eroded it precipitated or exacerbated more vulnerabilities.15 In totality, the findings across studies suggest that cognitive screening in HFpEF is warranted, and indeed may support personalized messages regarding self-care. If the findings are replicated in larger samples, and cognitive support interventions are tested, we may see recommendations for cognitive screening and the ‘cognitive personalization’ of care during heart failure consultations appearing in future guidelines. One factor worth considering in the context of these results is the potential need for updating the EHFSCBS-9,9 and/or other measures of self-care in light of recent evidence on fluid and salt restriction in heart failure. The FRESH-UP study reported that among 504 patients with heart failure randomized to liberal fluid intake vs. the fluid restriction group, there was no improvement in quality of life as measured by the Kansas City Cardiomyopathy Questionnaire. Further, thirst distress was higher in the fluid restriction group and there were no differences were observed for safety events.16 In the SODIUM-HF trail, Ezekowitz et al.17 reported that in ambulatory patients with heart failure, a dietary intervention to reduce sodium intake did not reduce clinical events. Consequently, heart failure guidelines provide cautious recommendations regarding fluid and salt restriction for heart failure management.18 Nonetheless, there remains a strong rationale for monitoring salt intake as part of overall blood pressure control. It often takes many years for new evidence to be translated into clinical practice. Even acknowledging this lag, it is reasonable to assume that self-care advice concerning fluid and salt restriction is less frequently emphasized in clinical settings, and therefore may be less relevant to patients when they respond to the two EHFScBS-9 items addressing these behaviours (Item 5: I limit the amount of fluids I drink; Item 7: I eat a low salt diet.9) People responding ‘I do not agree at all’ to these items are perhaps not indicating that they do not follow these once ubiquitous self-care recommendations, rather they have not been advised to and therefore it is a question of relevance. Similar interpretive issues may apply to statements concerning ‘contacting medical personnel’ and ‘exercising regularly’, particularly in HFpEF, where there is evidence that funding restrictions prohibit access to the specialist services19–21 and cardiac rehabilitation opportunities.21–23 Unfortunately, it is no easy task to update a valid and reliable questionnaire that has a significant history of use within important clinical trials.24 Content and construct validation is a long and arduous process and an amendment would have wide-ranging impacts given that this scale has been extensively translated across multiple languages and is freely available. Further, adapting a scale alters its utility in terms of making comparisons or combining results across studies that pre-date that amendment. This is perhaps the most important consideration, and additional work, or at least statistical adjustment, might be needed to integrate and interpret new findings with old. This study has raised an important issue in HFpEF that is the potential impact of cognitive function on a person’s ability to perform self-care. Prevailing evidence, predominantly qualitative, would support this quantitative causative association. The results also open up an intriguing discussion, is there a need to update the EHFSCBS-9, and/or other measures of self-care with similar statement, in view of recent publications that challenge earlier evidence on tight fluid and salt restriction in heart failure? Faye Forsyth (Conceptualization [lead]; Writing—original draft [lead]; Writing—review & editing [lead]), Sandra Mulrennan (Writing—review & editing [supporting]), and Philip Moons (Supervision [lead]; Writing—review & editing [equal]) No funding was secured or used for this commentary. This commentary does not contain new data.

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