ArticleScientific reports2024
Understanding what aspects of Parkinson's disease matter most to patients and families.
Article in Scientific reports, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
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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.
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.
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Examining the lived experience of dementia with Lewy bodies through qualitative research: A systematic review.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Pooled it
- Measuring what matters: Evaluating quality of life instruments through the eyes of people with Parkinson's disease.Journal of Parkinson's disease · 2026Article
- Modeling Framework for Economic Evaluation of Disease-Modifying Therapies in Parkinson's Disease: Evidence Review and Expert Opinion.PharmacoEconomics · 2026Article
- Parkinson's Disease: Pathophysiology, Treatment Strategies, Wellness Approaches, and Obstacles/Paths Forward.NeuroSci · 2026Review
- A Digital Cueing Intervention for Parkinsonian Gait: Laboratory-Based Clinical Validation and Acute Gait Responses.Journal of medical systems · 2026Article
- How to advance the pharmacological management of cognitive impairment in Parkinson's disease.Journal of Parkinson's disease · 2026Review
- It Is Personal: What People with Parkinson's Disease Say Matters Most for Quality of Life.Movement disorders : official journal of the Movement Disorder Society · 2026Article
- Three years later: tracking bothersome symptoms and impacts for people with early Parkinson's disease.Journal of neurology · 2026Article
- Knowledge structure and frontier trends of exercise interventions for Parkinson's disease: a bibliometric and visualized analysis.Frontiers in aging neuroscience · 2026Review
- Development and Validation of PARCOMS Composite Scales for Assessing Disease Progression and Treatment Effects in Parkinson's Disease.Neurology and therapy · 2025Article
- Investigation of the voice handicaps in Parkinson's disease and determination of the clinical correlates.Journal of neural transmission (Vienna, Austria : 1996) · 2025Article
- Systematic review and consensus conceptual model of meaningful symptoms and functional impacts in early Parkinson's Disease.NPJ Parkinson's disease · 2025Article
- Top motor and non-motor complaints in patients with Parkinson's disease.Frontiers in aging neuroscience · 2025Article
- Discrepancies in symptom concerns and burden from the perspectives of parkinson's disease patients, caregivers, and physicians.Frontiers in neurologyArticle
- Using Digital Outcomes to Measure Meaningful Aspects of Health in Clinical Trials for Parkinson's Disease: A Scoping Review.Digital biomarkersReview
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
Understanding what matters to people with Parkinson's and their family is essential to derive relevant clinical outcome measures and guide clinical care. The purpose of this study was to explore what is important to people with Parkinson's disease vs. family over time. A qualitative content-analysis of online survey data collected by Parkinson's UK was conducted to identify types and frequencies of important symptoms and impacts of Parkinson's for people with the disease vs. family of people with Parkinson's. Independent T-tests were used to identify significance of between group differences for patients vs. family at < 2, 2-5, 6-10, 11-20, > 20-year durations. ANOVA was used to assess for within group differences by disease duration. We found that symptom priority changed significantly over time with longer disease duration. Tremor was reported less often later on, whereas mobility, dyskinesias, gait and speech/communication symptoms gained priority. In general, patients identified movement-related symptoms (e.g., walking, bradykinesia) as the most bothersome at all durations while family more strongly prioritized the physical and psychosocial impacts of disease (e.g., mobility, safety, interpersonal interactions, independence, and family impact). We conclude that important differences exist between family and patient perspectives of what matters and change over time with longer duration of disease.
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Registered trials
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.