Development of Quality of Life Questionnaire for Patients with Parkinson’s Disease Undergoing STN-DBS

In device-aided therapy (DAT) for Parkinson’s disease (PD), factors such as device-related adverse effects, psychological and lifestyle changes, and specific disease progression can affect the quality of life (QoL) of patients with advanced PD. However, there is no existing QoL scale that includes the effects of therapeutic devices. From a semi-structured interview with patients with PD undergoing deep brain stimulation (DBS), we extracted the content of utterances that were thought to affect the QoL and created a draft questionnaire consisting of 113 items. This questionnaire was administered to 54 other patients undergoing DBS, whose data were examined for reliability and validity by factor analysis, and finally, a 24-item PD QoL questionnaire for patients on DAT (PDQ-DAT) was developed. Presently, the PDQ-DAT is the only scale that can assess the QoL of patients on DAT, including the influence treatment devices have on them. In the future, it might be used to help in shared decision-making in medicine by incorporating the patient’s sense of burden and values in the selection of treatment methods.