Introduction: Considerable evidence favors deep brain stimulation (DBS) over best medical management when motor complications are present in Parkinson’s disease (PD) patients. Nevertheless, variability in outcomes are not well understood, best practices are not well defined, and prospective, long-term health economics data and comparisons of treatment techniques are lacking. Randomized trials are impractical to investigate these questions. A DBS registry would effectively address these issues. A large and heterogeneous PD cohort undergoing DBS could be prospectively and comprehensively characterized using standard assessment batteries and image analysis in a quality improvement effort.
Methods: A survey of potential clinical sites investigated which clinical data are routinely captured in the work up of candidates for DBS. Clinician-measured and patient-reported outcomes and imaging studies typically gathered from active movement disorder centers were identified.
Results: Across 25 responding sites, 96% completed a Movement Disorder Society- Uniform Parkinson’s Disease Rating Scale (MDS-UPDRS) part III, 70-77% completed MDS-UPDRS parts I, II and IV, 91% completed Hoehn and Yahr staging, and 85% completed a Montreal Cognitive Assessment (MoCA) prior to surgery. The majority do not systematically assess non-motor symptoms or impulse control disorders, and only 68% capture the Parkinson Disease Questionnaire (PDQ-39). No respondents routinely assessed operative risk or patient satisfaction.
Conclusions: This survey identified a comprehensive set of data elements that would be logistically reasonable to capture systematically and benchmark for analysis in a multi-institutional registry. Prospectively capturing standard and comprehensive assessments and analyzing that data in a large PD cohort undergoing DBS, would identify potential changes in therapeutic strategies that could be implemented and analyzed. This data would have broad applicability to a range of practice scenarios and patient characteristics and ultimately improve the quality of DBS care and outcomes for PD patients. The infrastructure of the registry could also be applied to other disease states.
Patient Care: The implementation of a user friendly, patient oriented quality improvement registry holds great promise in providing direction to identify and implement best practices for DBS implantation in Parkinson's Disease.
Learning Objectives: By the conclusion of this session, participants should be able to: 1. Identify the difficulties posed by relying on clinical trials to determine best practices. 2. Describe the value of a Quality Improvement Registry in terms of benchmarking the quality of DBS procedures. 3. Discuss the common assessments collected by high volume clinical DBS centers.