Activation amongst patients with parkinsonism and caregivers: results from the PRIME-UK cross-sectional study

Introduction: People with Parkinson’s disease (PD) experience multiple symptoms with poorer quality of life. Patients with better knowledge and confidence to look after their health are more ‘‘activated’’ and have better health outcomes. Little is known about activation amongst people with PD and their caregivers.

Methods: PD patient and caregiver participants of this single-centre study self-completed questionnaires including the Patient Activation Measure (PAM) which quantifies self-management capability using Insignia Health’s electronic sheet, generating a score (0 to 100) categorised into four levels, as per specified cut points (lower score representing lower activation). We used linear regression models, where the outcome was total PAM score, to examine score
predictors.

Results: 438 patients (mean age 75.3 ± 8.4 years, 66% male) and 323 caregivers (mean age 70.5 ± 10.7 years, 26% male) had complete data for PAM. 279 (64%) patients and 189 (59%) caregivers were categorised as the lowest two activation levels. For each 5-year increase in patient age, total PAM score worsened by 1.51 points (96% CI - 0.74, - 2.28; p< 0.001). There was no association between patient gender/PD duration and activation. Caregiver age was not associated with PAM score. There was weak evidence (p = 0.07) to suggest male caregivers had lower activation.

Key conclusions: Low levels of activation were common amongst PD patients and caregivers. Older age was associated with lower activation amongst patients but not caregivers. There is a need to test interventions to improve self-management capability for this population and if this translates into improved outcomes.