ArticleJournal of multidisciplinary healthcare2011
Lack of information and access to advanced treatment for Parkinson's disease patients.
Article in Journal of multidisciplinary healthcare, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers, 1 of them a synthesis that pooled it.
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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
39 citing papers in PubMed, 1 synthesis or guideline pooled it, 70 citations in OpenAlex.
- The Long-Term Impact of Levodopa/Carbidopa Intestinal Gel on 'Off'-time in Patients with Advanced Parkinson's Disease: A Systematic Review.Advances in therapy · 2021Pooled it
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- Medication Knowledge of Patients with Parkinson's Disease: Strengths and Gaps.Movement disorders clinical practice · 2026Article
- Clinicians' views on a patient decision aid for deep brain stimulation in Parkinson's disease.Frontiers in human neuroscience · 2026Article
- Experiences of Australians Living With Parkinson's Disease.Parkinson's disease · 2026Article
- Licensed Subcutaneous Infusion Therapies in Advanced Parkinson's Disease: An Indirect Treatment Comparison and Cost-Minimisation Analysis.Neurology and therapy · 2025Article
- Health-Related Quality of Life in Relation to the 5-2-1 Criteria in Parkinson's Disease in Sweden.Movement disorders clinical practice · 2025Article
- Exploring deep brain stimulation willingness in Black individuals with Parkinson's disease.Equity neuroscience · 2025Article
- Centering the person in development of a model of care for people with Parkinson's disease: a qualitative study.Disability and rehabilitation · 2025Article
- Knowledge of Parkinson's Disease, Perceptions of Deep Brain Stimulation, and Attitudes Toward Its Use Among Patients in Morocco: A Cross-Sectional Study.Journal of patient experience · 2025Article
- What was first and what is next in selecting device-aided therapy in Parkinson's disease? Balancing evidence and experience.Journal of neural transmission (Vienna, Austria : 1996) · 2024Review
- Self-Management Systems for Patients and Clinicians in Parkinson Care: Protocol for an Integrated Scoping Review, Product Search, and Evaluation.JMIR research protocols · 2024Article
- Accessibility of Device-Aided Therapies for Persons With Parkinson's Disease in Poland.Journal of movement disorders · 2024Article
- Self-Management Systems for Patients and Clinicians in Parkinson's Disease Care: A Scoping Review.Journal of Parkinson's disease · 2024Article
- Are Parkinson's disease patients referred too late for device-aided therapies and how can better informed and earlier referrals be encouraged?Journal of neural transmission (Vienna, Austria : 1996) · 2023Article
- Access to device-aided therapies in advanced Parkinson's disease: navigating clinician biases, patient preference, and prognostic uncertainty.Journal of neural transmission (Vienna, Austria : 1996) · 2023Review
- Tools and criteria to select patients with advanced Parkinson's disease for device-aided therapies: a narrative review.Journal of neural transmission (Vienna, Austria : 1996) · 2023Review
- IoT in medical diagnosis: detecting excretory functional disorders for Older adults via bathroom activity change using unobtrusive IoT technology.Frontiers in public health · 2023Article
- Exploring health and social services in Denmark, Norway, Spain and the United Kingdom for the development of Parkinson's care pathways. A document analysis.Health & social care in the community · 2022Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundParkinson's disease (PD) patients' own knowledge and experience and access to information, in relation to advanced treatment methods, are very limited. The aim of this study was to map out PD patients' perception about various advanced treatment methods, their availability and regional differences in medical care, and to investigate patients' experience of their medication and quality of life.
methodsA survey was sent to 4886 PD patients of the Swedish Parkinson's Disease Association covering demography, the patient's illness, current treatment, received information about advanced treatment alternatives, and health status. Advanced PD was considered as patients diagnosed >5 years ago, using PD medication >5 times/day, and experiencing motor complications >2 hours/day.
resultsIn total, 3327/4886 persons (68%) responded (57% men) of which 1300 (39%) were classified as having advanced PD. Mean age was 71 years with a median disease duration of 8 years. The treating physician was a neurologist (86%) but varied between counties (96% to 52%) and was most frequent in urban areas. Doctor appointments were 1.7 times/year with regional variation (2.1 to 1.1). Three out of four patients had heard of advanced treatment options and were interested, but were denied treatment. Only a small proportion of patients were informed of these by their physician. Nine percent were satisfied with their medication (including 4% of advanced patients). One third of patients experienced their general health as poor or very poor.
conclusionThe majority of Swedish PD patients are treated by neurologists. Annual numbers of doctors' appointments were low in an international context and can partly be explained by the shortage of neurologists and other trained specialists. Doctors only provided a small proportion of patients with advanced therapy information, despite patients' interest. Hence, improvement is warranted regarding doctor appointments, information about various advanced treatment options, and their availability.
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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.