ArticleJournal of neurology2018
Patient experiences of receiving a diagnosis of Parkinson's disease.
Article in Journal of neurology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
What it found
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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.
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Who cites it
15 citing papers in PubMed.
- Digital Intervention Promoting Physical Activity in People Newly Diagnosed with Parkinson's Disease: Feasibility and Acceptability of the Knowledge, Exercise-Efficacy and Participation (KEEP) Intervention.Journal of Parkinson's disease · 2024Trial
- Improving Advance Care Planning for People with Parkinson's.Movement disorders clinical practice · 2026Article
- Experiences of Australians Living With Parkinson's Disease.Parkinson's disease · 2026Article
- Observed and Patient-Perceived Information Provision When Diagnosed With Parkinson's Disease.Movement disorders clinical practice · 2025Observational
- Parkinson's Disease in Australia: Evaluation of Regional Differences and Health-Related Quality of Life.The Australian journal of rural health · 2025Article
- 'I Knew Nothing About Parkinson's': Insights into Receiving a Diagnosis of Parkinson's Disease and the Impact of Self-Management, Self-Care, and Exercise Engagement, from People with Parkinson's and Family Members' Perspectives: Qualitative Study.Geriatrics (Basel, Switzerland) · 2025Article
- The diagnostic pathway of Parkinson's disease: understanding patient perspectives in Australia.NPJ Parkinson's disease · 2025Article
- Survey on Parkinson's Disease Diagnosis Impact: Patients, Caregivers and Health Care Professionals' Perspectives.Journal of clinical medicine · 2024Article
- Total Patient Delay: A Comparison of Patient and Clinician/Health System Delays in the Diagnosis of Progressive Supranuclear Palsy and Corticobasal Syndrome.Movement disorders clinical practice · 2024Article
- A programme evaluation of 'First Steps': A peer-conceived, developed and led self-management intervention for people after a Parkinson's diagnosis.Clinical rehabilitation · 2024Article
- How Information Affects Patients with Parkinson's Disease: A Scoping Review of the Literature.Journal of Parkinson's disease · 2024Article
- First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease.Health and quality of life outcomes · 2023Observational
- Hopamine as Personalized Medicine for Persons with Parkinson's Disease.Journal of Parkinson's disease · 2023Article
- Women Caring for Husbands Living with Parkinson's Disease: A Phenomenological Study Protocol.Journal of personalized medicine · 2022Article
- A Qualitative Study on the Impact of First Steps-A Peer-led Educational Intervention for People Newly Diagnosed with Parkinson's Disease.Behavioral sciences (Basel, Switzerland) · 2019Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo report patients' own experiences of receiving a diagnosis of Parkinson's disease (PD) and to identify factors influencing this experience.
methodsA survey by the European Parkinson's Disease Association in 11 European countries.
results1775 patients with an average age of 69.7 years participated of whom 54% were male. Those living in rural areas reported having waited longer to seek medical help (p < 0.05). A possible diagnosis of PD was made at the first appointment in a third of respondents. When the diagnosis was made, only 50% reported that the diagnosis was communicated sensitively. 38% of patients reported having been given enough time to ask questions and discuss concerns, but 29% did not. 98% of participants reported having been given information about PD at the time of diagnosis but 36% did not find the information given helpful. Patient satisfaction with the diagnostic consultation was positively associated with more sensitive delivery of diagnosis, the helpfulness and quantity of the information provided and time to ask questions (all p < 0.001). Where diagnosis was given by a specialist, participants reported greater perceived satisfaction with the diagnostic consultation, greater sensitivity of communicating the diagnosis, time to ask questions, provision and helpfulness of information, and earlier medication prescription (all p < 0.0001).
conclusionsThere is a need to improve how the diagnosis of PD is communicated to patients, the opportunity to ask questions soon after diagnosis, and the amount, timing and quality of life information provided, as this is associated with greater satisfaction with the diagnostic process.
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