Objective: To examine the evolution and change of the treatment-related expectations of patients with advanced Parkinson’s Disease (PD) before and during treatment with bilateral deep brain stimulation (DBS) of the subthalamic nucleus (STN).

Background: Bilateral DBS of STN is an established, highly effective treatment for advanced PD, whose beneficial effects on the motor symptoms can be maintained for more than five years. Patients’ expectations prior to and post-treatment depend on a multitude of factors, change during the disease course and sometimes subjectively appear to become more demanding in cases with great improvement after DBS treatment compared to the previous clinical situation.

Method: PD patients with bilateral DBS of STN who had undergone DBS surgery between 2013 and 2020 at our hospital were identified. After excluding patients with dementia, a case series of 44 patients (12 women, 32 men) remained. In order to evaluate the evolution of treatment-related expectations, a locally developed questionnaire with 31 items was administered by telephone to this group of patients. The questionnaire focuses on the past patient’s reasons for DBS surgery and collects information on to what extent their expectations have been met. Specifically, it explores common symptoms and problems, such as rigidity, tremor, gait impairment, dystonia, Off-time, dyskinesia, pain, altered mood, poor sleep quality, among others. The questionnaire also evaluates the memory of patients about their pre-operative expectations, thus allowing us to compare their memories to the expectations that they referred to in the past and were written in the medical records in order to detect changes in expectations even in cases where the patient do not recognise any change.

Results: The degree to which treatment-related expectations are fulfilled seems to depend on several factors, such as the specific reasons for DBS surgery, time since surgery and duration of the illness, among others. Patients’ expectations often change over time, and, in some cases, they may become more stringent.

Conclusion: A better knowledge of the evolution of treatment-related expectations can help both physicians and patients to identify unrealistic pre-operative expectations as well as to understand that expectations change over time and can sometimes become more demanding even in cases where a great improvement was achieved following DBS surgery.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/expectations-of-dbs-the-patients-perspective/