Patient activation amongst patients with Parkinsonism and informal caregivers:results from the PRIME-UK cross sectional study

Introduction:<br/>Self-management skills can help patients with Parkinson’s disease to adopt healthy behaviours and to live well thereby improving outcomes and reducing costs. <br/><br/>Methods:<br/>Patients with parkinsonism and caregivers in this single-centre study self-completed questionnaires including the Patient Activation Measure (PAM®) which quantifies self-management capability. Predictors of activation were determined using linear regression. <br/><br/>Results:<br/>64% (279/438) of patients and 59% (189/323) of caregivers were categorised as the lowest two activation levels. Increasing patient age, frailty, non-motor and depressive symptoms, four or more comorbidities, and worse quality of life were associated with lower patient activation. Increased hours spent caring and use of emotion-focused and problem-focused coping strategies were associated with increased caregiver activation. There was moderate evidence that male caregivers had lower activation. <br/><br/>Conclusion:<br/>Low activation levels were common amongst this more representative population of parkinsonism patients and caregivers. Proactive management of non-motor symptoms may improve activation and outcomes.