Use of the <scp>PROMIS</scp> and Neuro‐ <scp>QoL</scp> to Evaluate Health‐Related Quality of Life following Unilateral Subthalamic Deep Brain Stimulation for Parkinson's Disease

BACKGROUND: Subthalamic nucleus deep brain stimulation (STN DBS) improves Parkinson's disease (PD)-related motor symptoms, but how STN DBS impacts various aspects of patient-perceived health-related quality of life (HRQoL) is less clear. The Patient-Reported Outcome Measurement Instrument (PROMIS) and Quality of Life in Neurological Disorders (Neuro-QoL), National Institutes of Health computer adaptive inventories, are T-scored to a normative reference sample, and assesses 16 domains of a patient's HRQoL. OBJECTIVES: This cross-sectional study evaluated the convergent validity of a novel PROMIS + Neuro-QoL aggregate measure, the construct validity of the aggregate and 16 PROMIS and Neuro-QoL domains, and the responsiveness of these measures to change after STN DBS. METHODS: Twenty eight people with PD completed the PROMIS, Neuro-QoL, Parkinson's disease Questionnaire-8 (PDQ-8), and the Movement Disorder Society Unified Parkinson's Disease Rating Scale part III before surgery for STN DBS and at two follow-up visits within 6 months after surgery. A Pearson correlation assessed the relationship between PROMIS + Neuro-QoL aggregate and the PDQ-8, to determine convergent validity. One-sample t tests compared preoperative scores to normative means. Finally, one-sample t tests compared preoperative HRQoL and HRQoL after STN DBS. RESULTS: The PROMIS + Neuro-QoL aggregate agreed strongly with the PDQ-8, providing convergent validation. Preoperatively, patients reported significantly worse-than-normative values of overall HRQoL, physical function, cognitive function, social health, fatigue, and mental health, providing construct validation. After DBS, the PROMIS + Neuro-QoL aggregate, physical function, cognitive function, social health, and sleep improved, demonstrating responsiveness to change of the PROMIS and Neuro-QoL. CONCLUSIONS: Overall, these findings support the potential integration of the PROMIS and Neuro-QoL in clinical and research settings in patients with PD to provide valuable insights into the patient's lived experience during DBS therapy.