ArticleHealth informatics journal2019
Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson's disease in Sweden.
Article in Health informatics journal, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
What it found
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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
20 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
- A Systematic Review of Health Literacy in People Living With Parkinson's Disease.Health science reports · 2026Review
- Online Comprehensive Care Therapy Complementary Program Improves Quality of Life in People with Parkinson's Disease.Brain sciences · 2026Article
- Remote real time digital monitoring fills a critical gap in the management of Parkinson's disease.NPJ Parkinson's disease · 2025Article
- Knowledge, Attitudes, and Practices About Parkinson's Disease Among the General Population of the Eastern Province of Saudi Arabia.Healthcare (Basel, Switzerland) · 2025Article
- Patient Experiences and Prerequisites of Collaboration as Partners in Person-Centred Care: An Interview Study.Nursing open · 2025Article
- Feasibility and Acceptability of Intervention and Trial Procedures of the UCL Live Well With Parkinson's Self-Management Toolkit.Parkinson's disease · 2025Article
- Why publish? An interview study exploring patient innovators' reasons for and experiences of scientific publishing.Research involvement and engagement · 2024Article
- Balancing feeling 'prepared' without feeling 'devoured': A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson's disease in Sweden.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Delivering Multidisciplinary Rehabilitation Care in Parkinson's Disease: An International Consensus Statement.Journal of Parkinson's disease · 2024Article
- Article
- How Information Affects Patients with Parkinson's Disease: A Scoping Review of the Literature.Journal of Parkinson's disease · 2024Article
- Lived experience of persons with multiple sclerosis: A qualitative interview study.Brain and behavior · 2023Article
- Hopamine as Personalized Medicine for Persons with Parkinson's Disease.Journal of Parkinson's disease · 2023Article
- Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA.BMJ open · 2020Article
- Deep Phenotyping of Parkinson's Disease.Journal of Parkinson's disease · 2020Review
- "You have to know why you're doing this": a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease.BMC medical informatics and decision making · 2019Article
- Patient, study thyself.BMC medicine · 2018Article
- A Long Way to Go: Patient Perspectives on Digital Health for Parkinson's Disease.Journal of Parkinson's diseaseReview
- Domotics, Smart Homes, and Parkinson's Disease.Journal of Parkinson's diseaseReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Effective self-management is key to living well with Parkinson's disease and one important aspect is disease-specific knowledge. This article explores how people with Parkinson's disease in Sweden (1) acquire disease-specific knowledge and (2) use Parkinson's disease-related healthcare. Data were collected through an online survey, which had 346 respondents (16-87 years old, median age: 68 years, 51% male; time since diagnosis: 0-31 years, median time: 7 years). Our results show that disease-specific knowledge is mainly found online, especially for women with Parkinson's disease and people with Parkinson's disease of working age, that most people with Parkinson's disease in Sweden see their neurologist for 1 h or less per year and only one in two people with Parkinson's disease has regular contact with other Parkinson's disease-related healthcare professionals. We also find that people with Parkinson's disease reporting higher levels of specific knowledge also are more likely to be satisfied with the amount of time they get with their neurologist, regardless of the amount of time.
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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.