We told you so: 'knowledge is not enough to improve heart failure self-care behaviour'.

Abstract

This article refers to ‘Most elderly patients hospitalized for heart failure lack the abilities needed to perform the tasks required for self-care: impact on outcomes’ by M.T. Vidán et al., published in this issue on pages 1434–1442. In an innovative and elegantly conducted study in this issue of the Journal, Vidan and colleagues1 report data that confirm what many clinicians caring for elderly heart failure patients have sensed and suspected, namely, that even if persons report that they perform self-care behaviours it may not always happen in reality. In the study of Vidan et al., patients could on average perform three of six important self-care tasks: (i) to stand on a scale to take a reliable weight, (ii) to read and write down the weight, (iii) to assess oedemas, (iv) to identify the prescribed diuretic from a pill box, (v) to adjust the prescribed dose of diuretic treatment based on weight changes, and (vi) to identify highly salted foods. Only 5% could perform all the six tasks correctly. Surprisingly, prior heart failure self-care education only modestly improved the observed self-care ability and also surprisingly, the awareness of heart failure patients regarding their own needs for self-care support was poor, with less than half of patients receiving regular help. We are convinced that many clinicians will read this article with mixed feelings. Many will think ‘I told you so’, in other words: even after patient education, it is still hard for people, especially elderly, to do their daily self-care. Others might think that their patients certainly will do better than those in the study and others might doubt the value of patient education. In our recent work in the ‘Middle Range Theory of Self-care in Chronic Illness’,2 we describe that self-care is an extremely challenging process with several barriers such as experience and skills, motivation, habits, cultural beliefs and values, functional abilities and cognitive abilities, confidence, support and access to care.3 In this theory we describe that performing self-care requires the functional ability to engage in the required behaviours (e.g. balancing on a scale) and that problems with hearing, vision, balance, manual dexterity, cognition, motivation, psychological distress and energy can make self-care difficult.2, 4 Consequently, it seems logical to assume that if a patient lacks functional abilities or has decreased cognition, patient education by knowledge transfer alone will not change patient behaviour. Other researchers have also acknowledged the lack of knowledge and understanding of heart failure self-care in patients.5 More interactive and patient-centred approaches have been found to be more successful and www.heartfailurematter.org is a reliable web-based tool for patients to use.6 We fully agree with Vidan and colleagues who state that ‘as global self-care ability is independently associated with outcomes and potentially subject to changes, we should adjust the way of assessing these and educating elderly patients for heart failure self-management.’1 Patient education should be more than only presenting information to patients to improve their knowledge. Patient education should include contents to promote comprehensive understanding of heart failure and its symptoms, as well as the importance of self-care behaviours.4 Several interventions can help patients with heart failure to learn about self-care. A variety of interventions to improve self-care have been described ranging from disease management programmes,7 the heartfailurematters.org website, and/or e-health adjusted care pathway.8 Still not all interventions seem to be effective to improve outcomes, mainly those who only focus on knowledge transfer.7 So, if knowledge is not enough to improve self-care behaviours, what should our interventions to improve self-care be made of? First of all, it is important to consider that self-care in itself is complex and consists of three different components. Components of self-care are self-care maintenance, self-care monitoring, and self-care management.2 Self-care maintenance involves adherence to medication and lifestyle changes, while self-care monitoring of the signs and symptoms of heart failure includes activities such as daily weighing to assess fluid retention.9 Self-care management means responding appropriately to any changes in symptoms — for example, by increasing the dose of medications prescribed for use as needed.2, 3 The interventions that help patients to change self-care behaviour need to be tailored to these separate components and there is no magic solution that fixes all in one educational session that is suitable for every patients in all age groups, cultures and with different educational backgrounds. Second, to improve self-care it is vital to consider several issues that are involved performing the actual behaviour, such as motivation for self-care, skills to perform the behaviour and access to care. For example, to perform the self-care behaviour ‘physical activity’ patients need not only to have physical abilities but also have skills and possibilities to do it. Psychological factors and health literacy are vital to consider in our efforts to help patients to change their self-care behaviour.10 This also includes considering system factors, such as access to care. For example, if patients monitor their weight and are advised to call a health care provider in case of a weight gain, a health care system should be in place to respond. Thirdly, Vidan and co-workers confirm earlier studies that a large proportion of elderly patients with heart failure are unable to perform independently the most essential tasks for heart failure self-care and this is associated with an increased mortality.1 Support is needed from either informal or formal caregivers.11 Easy access to a multidisciplinary team and nurse-led heart failure clinics for follow-up and self-care support as well as greater caregiver contributions to heart failure self-care have been found to be associated with less hospitalizations and better survival.12-14 Patients themselves might not directly recognize this need for support and do not want to be a bother to others and ask for help. Organizing support should be more than only asking a partner to accompany the patient to the clinic and sit on the side and receive an educational session aimed at the patient. Interventions need to address the dyad including the patient and his/her informal caregiver and care partner together. Dyadic self-care interventions should be delivered to the dyad with the expectations that both dyad members will be actively engaged in the patient's heart failure self-care.15 Mutuality in patient–caregiver dyads is associated with patient self-care and caregiver burden and may be an important intervention target to improve self-care and reduce hospitalizations.16 In summary, this study by Vidan et al.1 clearly underlines that many patients with heart failure struggle with all the important aspects of heart failure self-care. A structured multi-disciplinary follow-up, innovative and interactive methods for patient education and a stronger emphasis from the health care to asses self-care needs and involve caregivers in supporting patients' self-care are advocated. Conflict of interest: none declared.