Evidence map›Paper›PMID 39545646›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2024

Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease.

Nathan Davies, Megan Armstrong, Jennifer S Pigott, Danielle Nimmons, Joy Read, Benjamin Gardner, Bev Maydon, Anette Schrag, Kate Walters

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Article
  2. Review
  3. An Age-Adapted Co-Design Methodology for Community Health Research Involving Older Adults With Type 2 Diabetes.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  4. Review
  5. Article
  6. Review
  7. Barriers and Facilitators to Accessing Healthcare for People With Parkinson's Disease in Latin America: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2025
    Article
  8. 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

9 authors.

Nathan DaviesCentre of Psychiatry and Mental Health, Queen Mary University, London, UK.ORCID 0000-0001-7757-5353
Megan ArmstrongResearch Department of Primary Care and Population Health, University College London, London, UK.ORCID 0000-0001-6773-9393
Jennifer S PigottDepartment of Clinical and Movement Neurosciences, University College London, London, UK.ORCID 0000-0002-0951-7941
Danielle NimmonsResearch Department of Primary Care and Population Health, University College London, London, UK.ORCID 0000-0002-1239-3417
Joy ReadDepartment of Clinical and Movement Neurosciences, University College London, London, UK.ORCID 0000-0002-3028-3975
Benjamin GardnerSchool of Psychology, University of Surrey, Guildford, UK.ORCID 0000-0003-1223-5934
Bev MaydonPatient and Public Involvement (PPI), London, UK.
Anette SchragDepartment of Clinical and Movement Neurosciences, University College London, London, UK.ORCID 0000-0002-9872-6680
Kate WaltersResearch Department of Primary Care and Population Health, University College London, London, UK.ORCID 0000-0003-2173-2430

Funding

This study are independent research funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research, Personalised care for people with Parkinson's Disease: PD-Care, RP-PG-1016-20001.
6 · The paper itself

Abstract

backgroundParkinson's disease is a complex progressive neurodegenerative disease increasing globally. Self-management interventions have shown promise in improving the quality of life for people with chronic conditions. This paper aims to describe the development processes and the core components of a facilitated self-management toolkit to support people with Parkinson's disease to self-manage their condition.

methodsAn iterative co-design approach was adopted and included the use of systematic reviews, qualitative methods and theory to develop the Live Well with Parkinson's toolkit. A co-design group was established consisting of people with Parkinson's, family carers and health and social care experts to produce and refine an online self-management toolkit to be tested in practice. Five co-design groups were conducted alongside several phases of toolkit development.

resultsAn online self-management toolkit, called Live Well with Parkinson's, was developed with core aspects such as tailored information to the individual, a well-being section using an asset-based approach and problem-solving skills to create and maintain goals, symptom review and management sections and a tracker of medication, symptoms and activities/actions. A paper-based alternative version was also created for those who cannot use an online resource. The toolkit is fully manualised and facilitated by six sessions from a 'supporter' who is trained in behaviour change techniques. It can be shared with carers and healthcare professionals.

conclusionThe toolkit is a robust and comprehensive approach to self-management of Parkinson's disease. It is evidenced based, incorporates theory and was developed with people with Parkinson's and experts in the area. The Live Well with Parkinson's toolkit has the potential to be embedded within routine healthcare, aligning with self-management policies. PATIENT OR PUBLIC CONTRIBUTION: Author B.M. is our patient and public involvement (PPI) representative and author on this paper. B.M. supports a team of 15 PPI members who have contributed to the development of the toolkit. This involvement has included attending research team and steering group meetings, attending and facilitating co-designed workshops, reviewing all the toolkit information before approval and supporting with the user testing.

Indexed as

Parkinson DiseaseSelf-ManagementCaregiversHumansInternetQualitative ResearchQuality of LifeSelf Careco‐designParkinson's diseaseself‐managementtoolkit

Identifiers

PMID39545646
PMCPMC11565443

What OpenQuestion holds

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LicenceCC BY
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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.