Illness perception, self-care behaviour and quality of life of heart failure patients: a longitudinal questionnaire survey

Objectives: To examine the associations between illness perception, self-care behaviour, and quality of life in patients admitted to hospital with a primary diagnosis of heart failure (HF), and the changes in these at 2 and 6 months after discharge.

Design: Longitudinal questionnaire-based study.

Setting: Three London hospitals with specialist heart failure services.

Participants: A convenience sample of 88 patients (70% male, mean age 70) admitted to hospital with a primary diagnosis of heart failure were recruited prior to discharge. Participants were over the age of 18, able to understand English, and with the cognitive ability to complete the questionnaires. Thirty-eight patients did not provide follow-up data: 21 (24%) died during the 6-month follow-up period, and 17 (19%) did not return their post-discharge questionnaires.

Methods: The Revised Illness Perception Questionnaire, the Self-Care Heart Failure Index, Hospital Anxiety and Depression scale, and the Minnesota Living with Heart Failure (MLHF) Questionnaires were completed prior to discharge from hospital, and 2 and 6 months after discharge.

Results: HF symptoms improved over time (MLHF score co-efficient [95%CI] -0.915 [-1.581, -0.250], P<0.001). Patients appeared to believe that many of the causes of their illness were outside their control. Although self-care maintenance (e.g. weighing daily) improved over time, this did not translate into increased involvement in self-care management (e.g. adjusting diuretic dose) or the ability to act on changes in symptoms. Self-care confidence was lower in those who reported a more negative emotional impact of their illness, but was higher in those who had high scores on illness coherence.

Conclusions: Six months following hospital discharge, patients' symptom control had improved. Many continued to believe that their illness was outside their control, and although self-care maintenance improved this was not associated with greater self-care management, particularly if the patient's emotional state was negative, and their understanding of their condition was poor. Our data suggest that a more participative person-centred approach, tailoring the disease management programme to address the patient's illness beliefs and emotional state, assisting the individual to identify barriers and solutions, may help increase self-care confidence and management.