ArticlePloS one2023
What are the modifiable factors of treatment burden and capacity among people with Parkinson's disease and their caregivers: A qualitative study.
Article in PloS one, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 3 of them syntheses that pooled it.
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Who cites it
11 citing papers in PubMed, 3 syntheses or guidelines pooled it, 21 citations in OpenAlex.
- 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 · 2025Pooled it
- Social Media and eHealth Literacy Among Older Adults: Systematic Literature Review.Journal of medical Internet research · 2025Pooled it
- Role of informal carers in medication management for people with long-term conditions: a systematic review.BMJ open · 2025Pooled it
- Caregiver burden in Parkinson's disease: a nationwide observational survey.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2025Observational
- The future of Parkinson's care: a need to expand access.Frontiers in neurology · 2025Article
- Article
- Integration of National Health Insurance claims data and animal models reveals fexofenadine as a promising repurposed drug for Parkinson's disease.Journal of neuroinflammation · 2024Article
- Family resilience and social support as mediators of caregiver burden and capacity in stroke caregivers: a cross-sectional study.Frontiers in psychology · 2024Article
- Concept Mapping to Define Components for an Occupation-Based Intervention for Parkinson's Disease and Anxiety.Journal of Parkinson's disease · 2024Article
- How Information Affects Patients with Parkinson's Disease: A Scoping Review of the Literature.Journal of Parkinson's disease · 2024Article
- The Effect of Spiritual Orientations and Religious Attitudes on Coping with the Difficulties Encountered by Family Caregivers of People with Parkinson's Disease in Türkiye.Journal of religion and health · 2023Article
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPeople with long-term conditions must complete many healthcare tasks such as take medications, attend appointments, and change their lifestyle. This treatment burden and ability to manage it (capacity) is not well-researched in Parkinson's disease.
objectiveTo explore and identify potentially modifiable factors contributing to treatment burden and capacity in people with Parkinson's disease and caregivers.
methodsSemi-structured interviews with nine people with Parkinson's disease and eight caregivers recruited from Parkinson's disease clinics in England (ages 59-84 years, duration of Parkinson's disease diagnosis 1-17 years, Hoehn and Yahr (severity of Parkinson's disease) stages 1-4) were conducted. Interviews were recorded and analyzed thematically.
resultsFour themes of treatment burden with modifiable factors were identified: 1) Challenges with appointments and healthcare access: organizing appointments, seeking help and advice, interactions with healthcare professionals, and caregiver role during appointments; 2) Issues obtaining satisfactory information: sourcing and understanding information, and satisfaction with information provision; 3) Managing medications: getting prescriptions right, organizing polypharmacy, and autonomy to adjust treatments; and 4) Lifestyle changes: exercise, dietary changes, and financial expenses. Aspects of capacity included access to car and technology, health literacy, financial capacity, physical and mental ability, personal attributes and life circumstances, and support from social networks.
conclusionsThere are potentially modifiable factors of treatment burden including addressing the frequency of appointments, improving healthcare interactions and continuity of care, improving health literacy and information provision, and reducing polypharmacy. Some changes could be implemented at individual and system levels to reduce treatment burden for people with Parkinson's and their caregivers. Recognition of these by healthcare professionals and adopting a patient-centered approach may improve health outcomes in Parkinson's disease.
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