Garon, Michela;
Weck, Christiane;
Leta, Valentina;
Dijkstra, Bauke W;
Muente, Catharina;
Gentile, Giovanni;
Trivedi, Dhaval;
... PD_Pal consortium; + view all
(2025)
Early thinking palliative care for people with Parkinson's disease: A thematic synthesis based on a systematic mixed-methods review.
Journal of Parkinson's Disease
10.1177/1877718X251321110.
(In press).
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Abstract
Background: Parkinson's disease is a progressive neurodegenerative disorder. Awareness and the evidence supporting the merits of palliative care (PC) approaches to people with Parkinson's disease (PwP) are increasing. Objective: This review aimed to address four key questions related to PC for PwPs and their caregivers: i) What are the indicators for timely access to PC? ii) When should PC be introduced? iii) What are the current care models for providing PC? iv) What are the barriers and facilitators at the organizational level? Methods: A systematic literature search was conducted in PubMed, CINAHL, Cochrane, EMBASE, and MEDLINE (2006–2024). Six reviewers independently screened abstracts and full texts, and thematic synthesis was applied to develop analytical themes. Reporting followed PRISMA guidelines. Results: Out of 894 studies, 70 were included. PwPs were infrequently referred to PC services, and while several referral criteria were identified, no consensus emerged. Barriers to accessing PC included insufficient information, inadequate education, difficulties determining referral timing, limited home-based care options, inconsistent provider support, and disparities linked to socioeconomic and cultural factors. Facilitators included improved care coordination and education for PwPs, caregivers, and healthcare providers. Effective PC models were identified, including home-based, hospital-based, and community-based approaches, which improved quality of life and reduced healthcare costs. Conclusions: Establishing consensus on referral timing and criteria is essential for integrating PC into Parkinson's disease care. Overcoming barriers requires enhanced education, better care coordination, and targeted interventions to address disparities, ensuring comprehensive, patient-centred care for PwPs and their caregivers.
| Type: | Article |
|---|---|
| Title: | Early thinking palliative care for people with Parkinson's disease: A thematic synthesis based on a systematic mixed-methods review |
| Location: | United States |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1177/1877718X251321110 |
| Publisher version: | https://doi.org/10.1177/1877718x251321110 |
| Language: | English |
| Additional information: | © The Author(s) 2025. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
| Keywords: | Parkinsonian disorders, Parkinson’s disease, health services accessibility, needs assessment, palliative care |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Movement Neurosciences |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10208234 |
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