Lessons learned from a large single center cohort of patients referred for DBS management

BackgroundDeep brain stimulation surgery (DBS) for movement disorders has become commonplace and patients are beginning to present to specialized centers for second opinions. We aimed to uncover reasons for referral by analyzing a large single center cohort of DBS patients referred for management.MethodsData were collected prospectively on a cohort of one hundred and eight patients who presented to the UF Movement Disorders Center for management following implantation at outside DBS centers. Data collected included referral reasons, pre-operative evaluation, DBS programming thresholds, DBS placement, need for optimization of therapy, and ultimate patient outcomes.ResultsNinety percent of patients reported at least one area of symptomatic dissatisfaction with the results of their DBS. Common issues included pre-operative misdiagnosis (28%), presence or exacerbation of symptoms not addressable by current DBS technology (48%), lead misplacement (43%), and need for medication (27%) or DBS programming (37%) optimization. Compared with leads placed using microelectrode recording (MER), leads placed without MER were strongly associated with misplacement (p = 0.03). Overall, 42% of subjects had no improvement, 37% slight improvement and 21% large improvement after medical and/or surgical management.ConclusionsThis study reveals common reasons why DBS patients may seek follow-up care at another institution. Although 90% of patients reported one or more problematic areas, many of these could not be addressed by current DBS technology. Similar to prior studies, we found that lead misplacement was prominent, as was the need for optimization of medicines and/or stimulation.