Illness Beliefs in End Stage Renal Disease and Associations with Self-Care Modality Choice

Background: Interest in self-care haemodialysis (HD) has increased because it improves patients’clinical and quality-of-life outcomes. Patients who undertake self-management for haemodialysis may hold illness beliefs differently to those choosing institutional care at the time of making the modality choice or moulded by their illness and dialysis treatment experience. Illness perceptions amongst predialysis patients and in those undertaking fully-assisted and self-care haemodialysis are being investigated in a combined cross-sectional and longitudinal study. Study Design: The study data are derived from the BASIC-HHD study, a multicentre observational study on factors influencing home haemodialysis uptake. 535 patients were enrolled into three groups: Predialysis CKD-5 group, prevalent ‘in-centre’ HD and self-care HD groups (93% at home). We explore illness perceptions in the cross-sectional analyses of the three study groups, using the revised Illness Perception Questionnaire (IPQ-R). Predialysis patients’ illness beliefs were reassessed prospectively, typically between 4 and 12 months after dialysis commencement. Results: Illness belief subscales are significantly different between in-centre and self-care HD groups. In a step-wise hierarchical regression analysis, after adjustment for age, education, marital status, diabetes, dialysis vintage, depression, anxiety scores, and IPQ-R subscales, personal control (p = 0.01) and illness coherence (p = 0.04) are significantly higher in the self-care HD group. In the predialysis group, no significant associations were found between illness representations and modality choices. In prospectively observed predialysis group, scores for personal control, treatment control, timeline cyclical and emotional representations reduced significantly after commencing dialysis and increased significantly for illness coherence. Conclusions: Illness beliefs differ between hospital and self-care haemodialysis patients. Patient’s affect and neurocognitive ability may have an important role in determining illness beliefs. The impact of modality upon illness representations may also be significant and remains to be explored.