Evidence map›Paper›PMID 38053209›Full record

ArticleTrials2023

Clinical and cost-effectiveness of 'Live Well with Parkinson's' self-management intervention versus treatment as usual for improving quality of life for people with Parkinson's: study protocol for a randomised controlled trial.

Kate Walters, Megan Armstrong, Benjamin Gardner, Gareth Ambler, Rachael Hunter, Bev Maydon, Nathan Davies, Catherine Atkinson, Richard Brown, Tasmin Rookes and 2 more

Abstract readClinical Trial Protocol
PubMed Full text at PMC Publisher
In one paragraph

Article in Trials, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Observational
  5. Article
  6. Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease.Health expectations : an international journal of public participation in health care and health policy · 2024
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Kate WaltersDepartment of Primary Care and Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK. k.walters@ucl.ac.uk.ORCID http://orcid.org/0000-0003-2173-2430
Megan ArmstrongDepartment of Primary Care and Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
Benjamin GardnerDepartment of Psychology, University of Surrey, Guildford, UK.
Gareth AmblerDepartment of Primary Care and Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
Rachael HunterDepartment of Primary Care and Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
Bev MaydonDepartment of Primary Care and Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
Nathan DaviesDepartment of Primary Care and Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
Catherine AtkinsonHomerton Healthcare NHS Foundation Trust, London, UK.
Richard BrownInstitute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Tasmin RookesDepartment of Primary Care and Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
Daniel DavisMRC Unit for Lifelong Health and Ageing, UCL, London, UK.
Anette SchragInstitute of Neurology, UCL, London, UK.

Funding

Programme Grants for Applied Research RP-PG-1016-20001
6 · The paper itself

Abstract

backgroundThe Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions.

methodsSingle-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions. DISCUSSION: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's.

trial registrationISRCTN92831552. Registered on 26th Oct 2021.

Indexed as

DementiaParkinson DiseaseSelf-ManagementCost-Benefit AnalysisHumansQuality of LifeRandomized Controlled Trials as TopicSingle-Blind MethodBehaviour changeLong-term conditionsParkinson’sRandomised controlled trialSelf-management

Identifiers

PMID38053209
PMCPMC10698895

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.