Affiliations: [a] Department of Neurology, Canisius Wilhelmina Hospital, Nijmegen, the Netherlands | [b] Department of Neurology, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, the Netherlands | [c] Department of Neurology, Donders Institute for Brain, Cognition, and Behavior, Radboud university medical center, Nijmegen, the Netherlands | [d] Scientific Institute for Quality of Healthcare, Radboud Institute for Health Sciences., Radboud university medical center, Nijmegen, the Netherlands
Correspondence to: Bastiaan R. Bloem, Radboud university medical center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Neurology 935, Reinier Postlaan 4, P.O. Box 9100, 6500 HB Nijmegen, The Netherlands. Tel.: +31 243615202; Fax: +31 243541122; E-mail: Bas.Bloem@radboudumc.nl.
Abstract: Background: In advanced Parkinson’s disease (PD), neurologists and patients face a complex decision for an advanced therapy. When choosing a treatment, the best available evidence should be combined with the professional’s expertise and the patient’s preferences. Objective: The objective of this study was to explore current decision-making in advanced PD. Methods: We conducted focus group discussions and individual interviews with patients (N = 20) who had received deep brain stimulation, Levodopa-Carbidopa intestinal gel, or subcutaneous apomorphine infusion, and with their caregivers (N = 16). Furthermore, we conducted semi-structured interviews with neurologists (N = 7) and PD nurse specialists (N = 3) to include the perspectives of all key players in this decision-making process. Data were analyzed by two researchers using a qualitative thematic analysis approach. Results: Four themes representing current experiences with the decision-making process were identified: 1) information and information needs, 2) factors influencing treatment choice and individual decision strategies, 3) decision-making roles, and 4) barriers and facilitators to shared decision-making (SDM). Patient preferences were taken into account, however patients were not always provided with adequate information. The professional’s expertise influenced the decision-making process in both positive and negative ways. Although professionals and patients considered SDM essential for the decision of an advanced treatment, they mentioned several barriers for the implementation in current practice. Conclusions: In this study we found several factors explaining why in current practice, evidence-based decision-making in advanced PD is not optimal. An important first step would be to develop objective information on all treatment options.
Keywords: Parkinson’s disease, evidence-based medicine, shared decision-making, qualitative research