ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Perspectives of people living with Parkinson's disease on personalized prediction models.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed, 3 citations in OpenAlex.
- A Qualitative Exploration of Ethical Aspects of Using AI in Parkinson Disease: Patient Panel Study.JMIR AI · 2026Article
- Perspectives of people living with Parkinson's disease on personalized prediction models.Health expectations : an international journal of public participation in health care and health policy · 2022Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere is a great need for the development of personalized prediction models (PPMs) that can predict the rate of disease progression for persons with Parkinson's disease (PD), based on their individual characteristics. In this study, we aimed to clarify the perspective of persons diagnosed with PD on the value of such hypothetical PPMs.
methodsWe organized four focus group discussions, each including five persons with PD who were diagnosed within the last 5 years. The sessions focused on what they think of receiving a personalized prediction; what outcomes are important to them; if and how the possibility of influencing the prognosis would change the way they think of personalized predictions; how they deal with the uncertainty from a PPM; and what barriers and facilitators they expect for using a PPM.
resultsThe wish of persons with PD for receiving personalized prognostic information was highly heterogenous, for various reasons. Most persons with PD would like to receive more personalized prognostic information, mainly to better prepare themselves and their loved ones for the future. The prediction provided should be as personalized as possible, and there should be adequate supervision and coaching by a professional when providing the information. They were particularly interested in receiving prognostic information when their interventions would be available that could subsequently influence the identified prognostic factor and thereby affect the disease course beneficially.
conclusionMost persons with PD in this study want more insight into their own future by means of prediction models, provided that this is explained and supervized properly by professionals. PATIENT OR PUBLIC CONTRIBUTION: Two patient-researchers were involved in the study design, conduct of the study, interpretation of the data and in preparation of the manuscript.
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