Currently submitted to: JMIR Research Protocols
Date Submitted: Dec 16, 2019
Open Peer Review Period: Dec 16, 2019 - Feb 10, 2020
(currently open for review and needs more reviewers - can you help?)
Toward Evidence-Based Decision Aids for Patients with Parkinson's Disease: Protocol for an Interview Study, an Online Survey, and two Randomized Controlled Trials
Shared decision making is particularly important in situations with different treatment alternatives. For the treatment of idiopathic Parkinson's disease (IPD), both medicinal and surgical approaches can be applied.
In this research project, a series of studies will be conducted to investigate how decision aids for patients with IPD should be designed in order to support the decision-making process.
In Study 1a, a qualitative interview study will be conducted to determine which needs frequently occur for patients with IPD. In Study 1b, the identified needs will then be rated as to their personal relevance by an independent group of patients in an online survey. In Study 2, a randomized controlled trial will be used to pre-test different decision aids with medical laypersons who have no Parkinson's disease. Study 3 will investigate in a randomized controlled trial the effect of the decision aids evaluated as positive in Study 2 on patients with IPD.
Data collection has not yet started. It is planned to present the study results and analyses at international conferences and to submit them to peer-reviewed journals. The findings will additionally be shared with clinicians and patients by presenting them at information events.
This series of studies is intended to lead to a design of an evidence-based decision-aid for patients with IPD in order to support the informed and reflected shared decision-making process. A further intention is to contribute to a deeper understanding of IPD patients’ individual preferences and the impact of those preferences on treatment decisions.
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