title: Understanding the importance of symptom recognition in self-management of heart failure
Creators: name: Seckin, Muzeyyen
Publisher: name: University of Glasgow
Year: 2024

description: Background: Heart failure is a clinical syndrome characterised by key symptoms that can be distressing to the affected individual and those caring them. These symptoms are associated with poor quality of life and a high rate of repeated hospital admission in people with heart failure. Thus, the rapid detection and management of symptoms linked to heart failure is important for people and their families. Current evidence related to heart failure is dominated by those of young age, a reduced ejection fraction, and male sex. To support more inclusive and equal symptom assessment and management in heart failure for the entire population, studies that include individuals with all forms of heart failure are essential.

Aim: This thesis investigated the full spectrum of symptoms and associated factors in people living with and dying from all forms of heart failure.
Methods: A sequential, multiple studies design including three studies was adopted, underpinned by critical realism and the Situation-Specific Theory of Heart Failure Self-care. Study 1 was a mixed-methods systematic review and narrative synthesis of existing literature to explore the full spectrum of symptoms experienced by people living with heart failure, and to compare these to those outlined within the European Society of Cardiology (ESC) Guidelines for the management of the syndrome. Study 2 was a secondary analysis of data derived from a randomised control trial of disease management conducted in Australia that included people of varying ages. The analysis investigated sex-stratified differences in symptoms and symptoms change over one year across the full range of heart failure subtypes. Study 3 was a descriptive qualitative study exploring the full spectrum of symptoms, and heart failure-associated breathlessness in the Turkish socio-cultural-behavioural context.

Results: Study 1 indicated that people with heart failure experienced many symptoms, and these symptoms can be very diverse and affected by multiple factors. As well as typical and less typical symptoms identified from the current European Society of Cardiology Guidelines, 37 other symptoms were identified. This includes a dry mouth, numbness in hands/feed, feeling drowsy, difficulty sleeping, and feeling anxious/nervous. Age (younger versus older) and setting (hospital versus community) were associated with various European Society of Cardiology Guidelines’ symptoms. There was a paucity of data on women’s symptoms in the current literature. Study 2: Sex-stratified differences were detected in the secondary analysis of the symptomatic status of the trial cohort at baseline and at one-year follow-up. Different factors were associated with worsening symptom trajectory on a sex-specific basis; for men, this included a history of hypertension and non-English-speaking background; and for women, a history of coronary artery disease and presenting with acute pulmonary oedema. Women with heart failure with preserved ejection fraction had worse symptomatic profiles over one year than women with reduced or mildly reduced ejection fraction. Study 3: Among 20 Turkish individuals with self-reported heart failure, 31 physical and 7 psycho-socio-behavioural symptoms were reported. Based on a reflexive thematic analysis of semi-structured interviews, knowledge and awareness of heart failure and breathlessness were poor among Turkish individuals. The socio-cultural-behavioural context affected their breathlessness and self-management strategies. They expressed a need for adequate education, psychological support, and long-term management strategies.

Conclusion and Implications: This PhD found a more diverse range of symptoms among the heart failure population than have previously been described. Symptoms such as difficulty sleeping, drowsiness, dry mouth, and feelings of anxiety and nervousness—though less typical—require attention to improve their management in heart failure. Additionally, socio-demographic and clinical profiles affect individual experiences of different symptoms. In routine clinical practice, identification of this more diverse range of symptoms can be achieved by applying a more individualised person-centred symptom assessment protocol. Consequently, health care providers can then support self-management strategies to enable appropriate person-centred symptom assessment.