VANCOUVER, British Columbia – Bilateral subthalamic nucleus stimulation is an effective treatment to mitigate the debilitating motor symptoms in patients with advanced Parkinson’s disease, and long-term outcomes demonstrate sustained improvement . However, quality of life (QoL) can be variable based on patient perception and different QoL measures used. In addition, unrealistic expectations on the part of patients and caregivers can lead to disappointment despite procedural success.
To address the potential disparity between patient perception and treatment outcomes, Jessica Karl, PA-C, from Rush University Medical Center in Chicago, Illinois, and colleagues created a survey to assess patient expectations regarding deep brain stimulation (DBS), willingness to potentially undergo a repeat procedure, and confidence in recommending the procedure to others.
The findings from the study were presented at the 2016 annual meeting of the American Academy of Neurology (AAN).
A total of 52 patients who were at least 5 years status post DBS (mean 8.2 ± 2.6 years) were administered the survey. In addition, Unified Parkinson’s Disease Rating Scales (UPDRS-I, UPDRS-II-OFF, UPDRS-IV), Schwab and England scales (S&E-ON, S&E-OFF), and the 39-item Parkinson’s Disease Questionnaire (PDQ-39-SI) were used to assess impairment and health-related QoL.
Responses on the survey were graded on a scale of 0 to 10, with 0 indicating the most positive response. Analysis of responses indicated high satisfaction at the time of survey, with a median score of 1/10 (range, 0-8). Patient expectations prior to undergoing DBS were also high at 2/10.
Comparing pre-DBS scores to the current time, analysis revealed no change in UPDRS-II-OFF, UPDRS-IV, S&E-ON, S&E-OFF (p=0.71) scores from pre-; UPDRS-I UPDRS-II-ON scores were found to be worse. PDQ-39-SI scores were 2.1 above baseline, but this was not statistically significant (P=0.44). However, patients whose preprocedural expectations were met demonstrated higher PDQ-39-SI scores compared with patients whose expectations were not met (P=.004). Pre-DBS expectations were reported to be met or exceeded by 75% of patients at the time of survey participation.
The investigators report that most patients continued to be satisfied with their decision to undergo DBS, would elect to undergo the procedure again if necessary, and would recommend the procedure to others. In addition, most participants reported that they would have preferred to undergo DBS earlier.
“Patients whose expectations were met had improved quality of life scores, less disability, and less LEDD (levodopa equivalent doses) requirements compared to those whose expectations were not met,” the researchers wrote. “In those whose expectations were met, quality of life was maintained, confirming the importance of setting realistic expectations.”
Karl J, Ouyang B, Metman LV. Patient-centered outcomes of deep brain stimulation in Parkinson’s disease. Presented at: The 68th Annual Meeting of the American Academy of Neurology; April 15-21, 2016; Vancouver, British Columbia. Poster P5.355.