ArticleJournal of Parkinson's disease2022
A Patient-Centered Conceptual Model of Symptoms and Their Impact in Early Parkinson's Disease: A Qualitative Study.
Article in Journal of Parkinson's disease, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 2 of them syntheses that pooled it.
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The trial behind it
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Who cites it
29 citing papers in PubMed, 2 syntheses or guidelines 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
- Patient With Parkinson Disease and Care Partner Perceptions of Key Domains Affecting Health-Related Quality of Life: Systematic ReviewNeurology · 2024Pooled it
- Inhibition of YTHDF2-mediated CYLD mRNA degradation promotes neuronal ferroptosis and pain in Parkinson's disease through NOX4 deubiquitination.Cell biology and toxicology · 2026Article
- Exploring the Lived Experiences of Individuals with Amyotrophic Lateral Sclerosis (ALS): A Qualitative Study and Conceptual Model of Signs, Symptoms, and Functional Impacts.Neurology and therapy · 2026Article
- Extracting Quality of Life Information of Patients Diagnosed With Breast Cancer From Health Care Online Forum Posts: Data Feasibility Study.JMIR cancer · 2026Article
- Three years later: tracking bothersome symptoms and impacts for people with early Parkinson's disease.Journal of neurology · 2026Article
- Clinical trials in neurosciences: Need for standards for innovation on clinical outcomes.Neuroscience applied · 2026Review
- Optimizing the MDS-UPDRS Part III for early-stage Parkinson's: early supportive evidence for a limb-related bradykinesia/rigidity sub-score.NPJ Parkinson's disease · 2025Article
- The Lived Experience of Patients Diagnosed with Vitiligo and a Preliminary Conceptual Disease Model: Insights from Patients, Patient Advocates, and Clinicians.Dermatology and therapy · 2025Article
- Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts.Dermatology and therapy · 2025Article
- Reported Symptoms in Prodromal and Early Motor Parkinson's Disease: A Scoping Review on the Patient Perspective.Movement disorders clinical practice · 2025Article
- Systematic review and consensus conceptual model of meaningful symptoms and functional impacts in early Parkinson's Disease.NPJ Parkinson's disease · 2025Article
- Characterizing Hand Function in Parkinson's Disease Patients with a Self-Administered Electronic Manual Dexterity Test.Movement disorders clinical practice · 2025Article
- Longitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson's.Journal of neurology · 2025Article
- Top motor and non-motor complaints in patients with Parkinson's disease.Frontiers in aging neuroscience · 2025Article
- Cognition and Activity of Daily Living Function in people with Parkinson's disease.Journal of neural transmission (Vienna, Austria : 1996) · 2024Review
- Understanding what aspects of Parkinson's disease matter most to patients and families.Scientific reports · 2024Article
- An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson's Disease in the United States and Germany.Neurology and therapy · 2024Article
- Why so slow? Models of parkinsonian bradykinesia.Nature reviews. Neuroscience · 2024Review
- Stemming the Tide: The Proactive Role of Allied Health Therapy in Parkinson's Disease.Journal of Parkinson's disease · 2024Review
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIndividuals with Parkinson's disease (PD) develop a significant disease burden over time that contributes to a progressive decline in health-related quality of life. There is a paucity of qualitative research to understand symptoms and impacts in individuals with early-stage PD (i.e., Hoehn and Yahr stage 1-2 and ≤2 years since diagnosis).
objectiveThe collection of qualitative data to inform the selection of clinical outcome assessments for clinical trials is advocated by regulators. This patient-centered, multistage study sought to create a conceptual model of symptoms and their impact for individuals with early-stage PD.
methodsSymptoms and impacts of PD were gathered from a literature review of qualitative research, a quantitative social media listening analysis, and qualitative patient concept elicitation interviews (n = 35). Clinical experts provided input to validate and finalize the concepts.
resultsThe final conceptual model consisted of 27 symptoms categorized into 'motor' or 'non-motor' domains, and 39 impacts divided into five domains. Most frequently reported symptoms in early-stage PD were 'tremors' (89%), 'stiffness and rigidity', and 'fatigue' (69%, both). Most frequently reported impacts included 'anxiety' (74%), 'eating and drinking' (71%), followed by 'exercise/sport' and 'relationship with family/family life' (66%, both).
conclusionThis study provides initial insights relating to the symptom and impact burden of early-stage PD patients. The conceptual model can be used to help researchers to develop and select optimal patient-centered outcomes to measure treatment benefit in clinical trials. These findings could inform future qualitative research and the development of outcomes specifically for early-stage PD patients.
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