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

Emma Tenison; Yoav Ben-Shlomo; Emily J Henderson

doi:10.1007/s41999-026-01417-x

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

Emma Tenison^*, Yoav Ben-Shlomo, Emily J Henderson

^*Corresponding author for this work

Research output: Contribution to journal › Article (Academic Journal) › peer-review

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Abstract

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.

Original language	English
Number of pages	6
Journal	European Geriatric Medicine
Early online date	9 Feb 2026
DOIs	https://doi.org/10.1007/s41999-026-01417-x
Publication status	E-pub ahead of print - 9 Feb 2026

Bibliographical note

Publisher Copyright:
© The Author(s), under exclusive licence to European Geriatric Medicine Society 2026.

Research Groups and Themes

Ageing and Movement Research Group

Keywords

parkinson's disease
caregiver
patient activation
self-management

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10.1007/s41999-026-01417-x

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This is the accepted author manuscript (AAM) of the article which has been made Open Access under the University of Bristol's Scholarly Works Policy. The final published version (Version of Record) can be found on the publisher's website. The copyright of any third-party content, such as images, remains with the copyright holder.
Accepted author manuscript, 1,000 KBLicence: CC BY

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@article{5c23737c3aa548f6ba4cfcfc9ebc3d98,

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

abstract = "Introduction: Self-management skills can help patients with Parkinson{\textquoteright}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{\textregistered}) 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.",

keywords = "parkinson's disease, caregiver, patient activation, self-management",

author = "Emma Tenison and Yoav Ben-Shlomo and Henderson, \{Emily J\}",

note = "Publisher Copyright: {\textcopyright} The Author(s), under exclusive licence to European Geriatric Medicine Society 2026.",

year = "2026",

month = feb,

day = "9",

doi = "10.1007/s41999-026-01417-x",

language = "English",

journal = "European Geriatric Medicine",

issn = "1878-7657",

publisher = "Amsterdam:Elsevier",

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TY - JOUR

T1 - Patient activation among patients with Parkinsonism and informal caregivers

T2 - results from the PRIME-UK cross sectional study

AU - Tenison, Emma

AU - Ben-Shlomo, Yoav

AU - Henderson, Emily J

PY - 2026/2/9

Y1 - 2026/2/9

N2 - 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.

AB - 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.

KW - parkinson's disease

KW - caregiver

KW - patient activation

KW - self-management

U2 - 10.1007/s41999-026-01417-x

DO - 10.1007/s41999-026-01417-x

M3 - Article (Academic Journal)

C2 - 41661535

SN - 1878-7657

JO - European Geriatric Medicine

JF - European Geriatric Medicine

ER -

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

Abstract

Bibliographical note

Research Groups and Themes

Keywords

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