Accepted for/Published in: JMIR Research Protocols
Date Submitted: Dec 16, 2019
Open Peer Review Period: Dec 16, 2019 - Feb 10, 2020
Date Accepted: May 20, 2020
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Toward Evidence-Based Decision Aids for Patients with Parkinson's Disease: Protocol for an Interview Study, an Online Survey, and two Randomized Controlled Trials
ABSTRACT
Background:
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.
Objective:
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.
Methods:
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.
Results:
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.
Conclusions:
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.
Citation
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.