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. 2018 Jul 4;4:94.
doi: 10.1186/s40814-018-0286-4. eCollection 2018.

Improving Shared Decision-Making in Advanced Parkinson's Disease: Protocol of a Mixed Methods Feasibility Study

Free PMC article

Improving Shared Decision-Making in Advanced Parkinson's Disease: Protocol of a Mixed Methods Feasibility Study

Frouke A P Nijhuis et al. Pilot Feasibility Stud. .
Free PMC article


Background: In advanced stages of Parkinson's disease (PD), patients and neurologists regularly face complex treatment decisions. Shared decision-making (SDM) can support the process where evidence, the clinician's expertise and the patient's preferences jointly contribute to reach an optimal decision. Here, we describe the rationale of our feasibility study protocol.The aim of the study is to test the feasibility of the SDM intervention by (1) analysing the acceptability of the intervention by users (i.e. professionals and patients), (2) assessing the level of implementation, (3) testing efficacy on a small scale and (4) evaluating the study procedures.

Methods: Using an uncontrolled before-after mixed methods design, patients in the pre-intervention group will receive information and decisional support as usual. Patients in the post-intervention group will receive the SDM intervention, consisting of an Option Grid™ patient decision aid and a website with supplementary information plus a value clarification tool for both patients and professionals. An Option Grid is a one-page, evidence-based summary of available options, listing the frequently asked questions that patients consider when making treatment decisions. A value clarification tool helps patients identify which option he/she prefers based on attributes in the treatment decision context. Neurologists and PD nurse specialists will receive a 1-h instruction on SDM and how to use the SDM intervention.Through purposive sampling, neurologists and PD nurse specialists will be recruited from both specialised neurology clinics and community-based hospitals. Included professionals will invite consecutive patients who are eligible for the advanced therapies.Data will be collected using questionnaires, interviews and audio observations of the consultations and by tracking users' logging behaviour of the website. Data will be analysed using a mixed methods design.

Discussion: The mixed methods design will create a deeper understanding of how the SDM intervention affects the interactions between professionals (a neurologist and/or a PD nurse specialist) and the patient, when an advanced treatment is chosen. The results of the study will inform the design of an RCT to test the effectiveness of the SDM intervention.

Trial registration: NTR6649, retrospectively registered 28 August 2017.

Keywords: Decision aid; Feasibility study; Mixed methods design; Parkinson’s disease; Protocol; Shared decision-making.

Conflict of interest statement

The study will be performed according to the Ethical Principles for Medical Research Involving Human Subjects, as defined in the Declaration of Helsinki. Medical Research Ethics Commission (MREC) approval from the accredited local MREC (CMO Arnhem-Nijmegen) in the Netherlands has been obtained (registration number 2014-1489). Patients (and either the neurologist or PD nurse specialist or researcher) will sign an informed consent form approved by the local MREC to participate in this study. All patients will be asked for permission to audiotape the consultations with their neurologist or Parkinson nurse specialist.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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