Development and acceptability of a deep brain stimulation surgery decision aid for Parkinson's disease

Background The decision to undergo deep brain stimulation (DBS) surgery for patients with Parkinson's disease (PD) is often challenging and complex. Decisional outcomes may be improved by using decisional support tools that foster shared decision making. Objective The objective of this study was to develop a decision aid for PD patients considering DBS surgery and evaluate its acceptability. Methods The decision aid was developed using an evidence-based and systematic approach. The steps in development included a needs assessment, literature review, development of a decision aid prototype, and testing of the prototype with surveys for acceptability in a clinic setting. Results A total of 136 participants with PD participated in this study. The needs assessment included 57 participants who completed the decisional conflict scale with a mean score of 35.3, indicating high decisional conflict. After development, initial testing of the decision aid was completed by 22 participants (16 on paper version and 6 on interactive website version). Subsequently, 46 PD participants evaluated the decision aid for acceptability. Eighty seven percent of participants agreed or strongly agreed that they were satisfied with the quality of the decision aid. Most participants found the language, amount of information, length, balance, and risk and benefits section acceptable. Conclusion We determined that PD patients undergoing DBS evaluation experience high decisional conflict. We subsequently created a DBS decision aid to increase knowledge, manage expectations, clarify values, and facilitate shared decision making. The decision aid was acceptable to PD patients with and without DBS.