Attitudes toward use and timing of deep brain stimulation: a patient's with DBS perspective

Objective: To guide responsive policy and better understand factors that might shape patients’ decisions to have DBS earlier, we explore perspectives and attitudes toward earlier deep brain stimulation (DBS) of Parkinson disease (PD) patients with DBS. Introduction: Before the US Food and Drug Administration released its change of indication for the use of DBS for PD, several groups had performed DBS earlier in disease course. Methods: We designed an online survey comprising Likert-type, multiple choice, and rank-order questions and distributed it to PD patients. We analyzed patient considerations for having chosen DBS and for choosing or rejecting to have DBS earlier, as well as factors potentially shaping perspectives around DBS and its timing. Data was analyzed using descriptive and inferential statistics. Results: Among the 160 participants in the sample, the most important consideration for choosing DBS was the possibility of better symptomatic control compared to medication alone. The most important consideration for delaying DBS was possible ineffectiveness. 41.3 % (n = 66) of respondents supported earlier DBS use, 38.8 % (n = 62) did not, and the remainder (n = 30) were uncertain. Patients who supported earlier DBS use cited the possibility of better symptomatic control than with medication alone, while those who did not support earlier use felt that medication options should be exhausted first. Conclusion: Our results suggest that there are multiple factors shaping patient perceptions around earlier DBS implantation. Future work should compare perceptions before and after DBS implantation, as well as pair perceptions with clinical outcomes.