Illness Representation and Self-Care Ability in Patients with Chronic Disease

Background/Purpose: Chronic illness affects >50% of adults and accounts for >80% of all health care spending. The purpose of this study was to determine whether one’s unique set of beliefs about their chronic disease is associated with self-care ability, emergency room visits and hospitalizations. Framework: I used the Common Sense Model, which proposes that people develop mental models of their chronic disease (illness representation profiles) that drive their treatment goals and health behaviors. Methods: Using a cross-sectional design, patients with heart failure, COPD, and chronic kidney disease (CKD) completed questionnaires in outpatient clinics at a Midwestern medical center. The Revised Illness Perception Questionnaire (IPQ-R) was used to measure perceptions about disease timeline, consequences, personal control, treatment control, understanding of the illness (coherence), stability of disease pattern (cyclical), and emotions. The Patient Activation Measure was used to measure self-care ability (confidence, knowledge and skills). The number of emergency room visits and hospitalizations in the last year, disease severity, and demographics were measured with a self-report questionnaire. Latent profile analysis using the seven IPQ-R subscale scores was used to identify subgroups characterized by unique illness representation profiles. Subgroup differences were determined with Chi square, ANOVA, and logistic regression. Results: Participants included 187 adults with heart failure, COPD, or CKD (mean age 65 years, 46% male, 74% Black). I found three distinct subgroups (stable, overwhelmed, and confident), each characterized by a unique illness representation profile. The groups did not differ demographically and were not disease-specific. The stable group (few consequences, non-fluctuating pattern) had the fewest people hospitalized in the last year. The overwhelmed group (many consequences, disease not well-understood, variable pattern, high negative emotion) had high hospitalizations and low self-care ability. The confident group (high perceived self-control and treatment control, well-understood) had the highest self-care ability, but hospitalizations were similar to the overwhelmed group. Emergency room visits did not differ by subgroup. Conclusions: Within the chronic disease population, there are three distinct subgroups that differ in terms of their illness representation profiles and health outcomes. Findings suggest that assessing patients’ beliefs about their chronic disease may have important implications for subgroup-specific interventions.