How Parkinson’s patients in the USA perceive deep brain stimulation in the 21st century: Results of a nationwide survey

Abstract

Research on attitudes regarding the use and timing of deep brain stimulation (DBS) has been mostly qualitative to this date. In this study, we aim to examine attitudes and perceptions about the use and timing of DBS in patients with Parkinson’s disease (PD) who have not had DBS. We designed an online survey comprising Likert-type, multiple choice, and rank-order questions and distributed it to PD patients. We recruited participants via flyers, the Michael J. Fox Foundation Trial Finder, and the Parkinson Alliance website. We analyzed considerations for choosing or rejecting DBS and when participants would consider such a decision to be premature. Data were analyzed using descriptive and inferential statistics, including a multinomial logistic regression model. Among the 285 participants who reported not having undergone DBS, the most frequent concerns were related to the efficacy of DBS and not having exhausted medication alternatives. DBS was viewed as less convenient, effective, and safe when PD symptoms were still manageable by medication. Our regression model suggests that having fewer concerns over technical problems was a positive predictor of preferring early DBS, while concerns over DBS interfering with friendships and relationships was a negative predictor. Our results suggest that patients with PD who have not undergone DBS have a wide variety of attitudes regarding DBS and its timing. Given the increasing number of therapeutic options for PD, future work should compare perceptions and preferences regarding different PD treatment modalities to provide the best counseling for patients regarding their therapeutic options.