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Introduction <p>Self-management skills can help patients with Parkinson’s disease to adopt healthy behaviors and live well, thereby improving outcomes and reducing costs.</p> Methods <p>Patients with parkinsonism and caregivers in this single-center study self-completed questionnaires including the Patient Activation Measure (PAM®) which quantifies self-management capability.&#xa0;Predictors of activation were determined using linear regression.</p> Results <p>64% (279/438) of patients and 59% (189/323) of caregivers were categorized 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.</p> Conclusion <p>Low activation levels were common among this more representative population of parkinsonism patients and caregivers. Proactive management of non-motor symptoms may improve activation and outcomes.</p>

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

  • 期刊论文

  • 发表日期：

    2026年2月9日

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  • Emma Tenison,
  • Yoav Ben-Shlomo,
  • Emily J. Henderson

摘要

Introduction

Self-management skills can help patients with Parkinson’s disease to adopt healthy behaviors and live well, thereby improving outcomes and reducing costs.

Methods

Patients with parkinsonism and caregivers in this single-center study self-completed questionnaires including the Patient Activation Measure (PAM®) which quantifies self-management capability. Predictors of activation were determined using linear regression.

Results

64% (279/438) of patients and 59% (189/323) of caregivers were categorized 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.

Conclusion

Low activation levels were common among this more representative population of parkinsonism patients and caregivers. Proactive management of non-motor symptoms may improve activation and outcomes.