What should be done to promote symptom perception in patients with heart failure?

This invited commentary refers to ‘The symptom perception processes of monitoring, awareness, and evaluation in patients with heart failure: a qualitative descriptive study’, by S. Lee et al., https://doi.org/10.1093/eurjcn/zvad116. Symptom perception during worsening of heart failure (HF) is one of the aspects of self-care necessary for patients suffering from HF. Symptom perception is a concept newly added to the theory of HF self-care by Riegel1 when it was updated in 2016. Symptom perception is a process of perceiving physical sensations and interpreting their meanings, including body listening, symptom monitoring, and recognizing, interpreting, and labelling of symptoms.1 To notice exacerbation of HF, patients must pay attention to physical sensations by body listening, monitoring symptoms, and recognizing changes in symptoms. Once symptoms are noticed, the symptoms are interpreted to determine whether they are suggestive of disease and find the causes of the symptoms, leading to attribution of the symptoms to specific symptom names and specific causes, which in turn allows for coping behaviours for the symptoms. Previous studies have reported that patients with HF have poor symptom perception.2,3 Symptom perception is influenced by somatic awareness, which refers to sensitivity to physical sensations and physical activities associated with physiological changes.4 It has been reported that patients with low sensitivity to physical sensations, such as elderly patients, have difficulty recognizing symptoms.5 Patients with HF also have inadequate symptom monitoring: over half do not monitor their weight or oedema and adhere to monitoring or are unable to monitor symptoms without assistance from others due to physical and cognitive disabilities.2,3 Moreover, even when symptoms of HF exacerbation are noticed, patients may attribute the symptoms to causes other than HF, such as aging, common cold, and pulmonary disease.6–8 To solve these problems in symptom perception, it is important to understand how patients actually follow the process of symptom perception as presented in the theory and what factors prevent the patients from following steps of the process. The study by Lee et al.9 is of great interest because it has revealed the process by which patients perceive their symptoms in detail through patient interviews and identified the factors that promote and inhibit each process. The results of Lee et al.’s9 study showed that the process of symptom perception follows a course of symptom monitoring, symptom awareness, and symptom evaluation, in which symptom awareness promotes symptom monitoring. Symptom monitoring was facilitated when family support was available and symptom monitoring was part of the daily routine and inhibited by depression and distraction by other priorities. Symptom awareness was promoted by knowing the common signs and symptoms of HF and paying attention to the body. Meanwhile, the occurrence of symptoms experienced in the past or changes manifesting urgent warnings promoted symptom awareness even in the absence of intentional symptom monitoring. Symptom evaluation was hampered by inadequate understanding of the symptoms, mechanisms, features, and consequences of HF. The study also showed that symptom evaluation was delayed when patients had negative emotions, such as fear or frustration, after the symptoms were noticed. Symptom monitoring is difficult to implement and continue because of distraction from other priorities.9 Examples of other priorities include work, parenting, and caring for family members.9,10 With such high-priority tasks, it can be difficult to remember to observe symptoms or to find time to do so. However, symptom monitoring does not necessarily require allocation of a significant length of time for observation. Taking advantage of a characteristic of HF symptoms that they occur with exertion, it is also important that patients turn their attention to the body and observe symptoms while walking to work, caring for a loved one, or playing with a child. Healthcare professionals should know the patient’s lifestyles, find out when symptoms can be observed, and help the patient integrate symptom monitoring into his or her life. It is important for patients to develop the habit of paying attention to their bodies while managing their daily priorities. Negative emotions, such as fear, delay symptom evaluation after symptoms are noticed.9 When patients are told by their healthcare providers that their symptoms suggest the ‘presence of heart disease’ or ‘worsening of HF’, they feel anxious and fearful because they believe their health and daily life are threatened. These negative emotions lead to behaviours such as ignoring symptoms, denying symptoms, stopping to think about symptoms and their causes, and refusing to communicate with healthcare professionals.9,11 To improve delays in evaluation due to negative emotions after symptoms are noticed, education about symptoms and symptom monitoring needs to focus on what patients think, what psychological effects they experience, and what actions need to be taken when they notice symptoms. It is essential that patients have knowledge of HF symptoms in order to monitor symptoms and recognize changes. Meanwhile, the symptoms experienced during exacerbation of HF vary from patient to patient, as do the ways in which the symptoms experienced are expressed.12 In addition to educating patients about HF symptoms with terms used by healthcare professionals, educating patients about patient-specific symptoms occurring during exacerbation of HF based on symptoms experienced previously by individual patients and using expressions that are familiar to patients may promote symptom awareness. If the cause of delayed symptom awareness is age-related loss of sensitivity to physical sensations, support by family members or caregivers is important. Self-care support, including promoting symptom monitoring and symptom awareness by caregivers, facilitates patients’ symptom management and reduces symptom burden.13 Assistance that caregivers should provide to facilitate patients’ symptom perception includes asking and checking patients on whether or not they have had symptoms and observation of patients’ symptoms by caregivers. In order for caregivers to observe patients and notice changes in symptoms, they must have specific methods and skills that help others objectively recognize subjective symptoms of patients. As the number of elderly HF patients increases, the role of caregivers in symptom perception becomes increasingly important. Moving forward, more studies need to be conducted on specific methods and necessary support for caregivers to recognize HF symptoms that patients are experiencing. We would like to express our gratitude to the authors of the study ‘The symptom perception process of monitoring, awareness, and evaluation in patients with heart failure: A qualitative descriptive study’ and the patients involved in their investigation. We would like to thank Philip Moons, the Editor-in-Chief for the opportunity to write this commentary. None declared.