gms | German Medical Science

Objective: Deep brain stimulation (DBS) is a widely employed therapeutic modality for the neurosurgical treatment of movement disorders. This study focuses on the subjective patient perception of this specific procedure.

Method: Via comprehensive postal structured interviews, patients were asked about their subjective experience regarding DBS in a retrospective study design. Eight different areas of neurosurgical care were assessed, including neurosurgical information-giving or the neurosurgical procedure itself. For each area of care, patients were asked about (1) extent of (dis-)satisfaction, (2) recommendations for improvements, and (3) the most positive aspects of the current practice. Supplemental factors were quantitatively assessed (e. g., depression, Health-related Quality of Life [QoL]).

The sample consists of 60 patients (response rate = 63%) who were surgically treated for Parkinson's disease (81%) or Essential Tremor (19%) in our department between 2009 and 2011. Mean age of the patient group was 65 years (range = 44-78, SD = 9.2). Mean time since DBS was 21.8 months (range = 4-37, SD = 10.5).

Results: The majority of patients (80%) described "very high" or "high" need-for-information prior to surgery which declined after the procedure. Most patients described themselves as satisfied with the neurosurgical education. Main suggestions for improvements were receiving more extensive information, or in additional formats (written/DVD). High levels of satisfaction were mainly attributed to extent and quality of information. Satisfaction with the experience in the operating room was "very high" or "high" in 82%. The most frequently reported positive aspects were assignment of a dedicated member of the care-team, enjoyable atmosphere, and high professionality and competence of the neurosurgical team. Main negative experiences were drilling and discomfort. Subjective patient satisfaction was mainly independent of other factors (e. g., age, QoL, and UPDRS) as well as subjective or objective surgery success. However, higher levels of depression predicted lower levels of satisfaction with the neurosurgical education.

Conclusions: This is the first study of the subjective patient perception of DBS. Although demanding, the procedure is tolerable for the vast majority of patients. Extensive qualitative analyses revealed terms for high levels of patient satisfaction as well as ideas for improvement. This might help to further improve neurosurgical patient care.