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A programme evaluation of 'First Steps': A peer-conceived, developed and led self-management intervention for people after a Parkinson's diagnosis

Lookup NU author(s): Professor Camille CarrollORCiD



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


© The Author(s) 2023. Objective: A diagnosis of Parkinson's often leads to uncertainty about the future and loss of perceived control. Peer support may offer a means to address these concerns and promote self-management. Design: A programme evaluation of the feasibility and potential effects of ‘First Steps’, utilising a pragmatic step wedge approach. Comparing First Steps (intervention) to (control) conditions. Setting: In the community at four sites in southern England. Participants: Newly diagnosed (≤ 12months) people with Parkinson's. Intervention: First Steps was a 2-day peer-conceived, developed and led intervention to support self-management. Main measures: At 0, 12 and 24 weeks anxiety and depression (Hospital, Anxiety and Depression Scale, HADS), daily functioning (World Health Organisation Disability Assessment Schedule, WHODAS), physical activity, quality of life (EQ5D), carer strain and service utilisation were assessed. Results: Between February 2018 and July 2019, 36 participants were enrolled into intervention and 21 to control conditions, all were included in statistical analysis. Lost to follow up was n = 1 (intervention) and n = 1 adverse event was reported (control, unrelated). Of the 36 allocated to the intervention n = 22 participants completed both days of First Steps during the study period. Completion of outcome measures was >95% at 24 weeks. Small effects favouring the intervention were found for HADS (odds ratio (OR) = 2.06, 95% confidence interval (CI) 0.24:17.84), Carer Strain Index (OR = 2.22, 95% CI 0.5:9.76) and vigorous (d = 0.42, 95% CI −0.12:0.97) and total physical activity (d = 0.41, 95% CI −0.13:0.95). EQ5D, WHOSDAS and service utilisation, was similar between groups. Conclusions: First Steps was feasible and safe and we found potential to benefit physical activity, mental health and carer strain. Further research with longer-term follow up is warranted.

Publication metadata

Author(s): Collett J, Lawrie S, Bromley S, Harling P, Reed A, Brusco N, Coe S, Coebergh J, Carroll C, Roberts HC, Hu MT, Dawes H

Publication type: Article

Publication status: Published

Journal: Clinical Rehabilitation

Year: 2024

Volume: 38

Issue: 3

Pages: 403-413

Print publication date: 01/03/2024

Online publication date: 09/11/2023

Acceptance date: 02/04/2018

Date deposited: 30/01/2024

ISSN (print): 0269-2155

ISSN (electronic): 1477-0873

Publisher: Sage Publications Ltd


DOI: 10.1177/02692155231210969


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Funder referenceFunder name
NIHR Applied Research Collaboration Wessex
NIHR Exeter Health Biomedical Research Centre
NIHR Southampton Biomedical Research Centre
Parkinson's UK
NIHR Oxford Health Biomedical Research Centre