A decision aid is not the quick fix for improving shared decision-making in advanced Parkinson's disease: results of a mixed methods feasibility study.
Frouke A P Nijhuis, Bas Schippers, Bastiaan R Bloem, Bart Post, Marjan J Meinders
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Abstract
Background: Choosing a device-assisted treatment for persons with Parkinson's disease (PwPD) is a complex decision. We developed a shared decision-making (SDM) intervention to facilitate this decision. In this study, we evaluate the feasibility of this intervention from the patients' perspective.
Methods: We performed a multi-center, mixed-methods feasibility study with an uncontrolled pre-post-intervention design. Five neurologists and seven Parkinson nurse specialists from five Dutch hospitals participated. We aimed to enroll 20 PwPD in the usual-care group receiving decision support as usual, and 20 PwPD receiving the SDM intervention. The intervention consisted of a patient decision aid and a training for professionals. We evaluated feasibility by measuring acceptability, level of implementation, efficacy and the study procedures. For data collection, we used questionnaires, interviews, cognitive testing, consultation recordings, fieldnotes, and usage of the patient decision aid.
Results: We included 19 PwPD in the usual-care group and 13 in the intervention group. Acceptability was good and implementation levels at the patient level were adequate: 92% of the participants used the patient decision aid, of which 77% the website and 69% the value clarification tool. The intervention improved PwPD's knowledge on treatment options, however, it did not improve SDM. The SDM intervention was not used as intended and the initial treatment preference of either the PwPD or the professional directed the information exchange.
Conclusions: Inclusion of PwPD for the study was limited. Acceptability of the SDM intervention was good, however, the patient decision aid should be used in collaboration between physicians and patients to enhance SDM.
Trial registration: NTR6649, registered 28-08-2017 (available through ICTRP search portal).
期刊介绍：
The Journal of Neurology is an international peer-reviewed journal which provides a source for publishing original communications and reviews on clinical neurology covering the whole field.
In addition, Letters to the Editors serve as a forum for clinical cases and the exchange of ideas which highlight important new findings. A section on Neurological progress serves to summarise the major findings in certain fields of neurology. Commentaries on new developments in clinical neuroscience, which may be commissioned or submitted, are published as editorials.
Every neurologist interested in the current diagnosis and treatment of neurological disorders needs access to the information contained in this valuable journal.
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