Objective: To identify which non-motor symptoms (NMS) are most relevant in an advanced Parkinson’s Disease (PD) population and determine the suitability of the International Parkinson and Movement Disorder Society Non-Motor Rating Scale (MDS-NMS) for use in this context.

Background: PD is traditionally recognized by motor symptoms (MS) of resting tremor, bradykinesia, and rigidity but NMS are also a key determinant of health-related quality of life. Earlier qualitive research provided evidence of the wide range of NMS experienced by persons with advanced PD (PwAP), highlighting the significant unmet need for targeted treatments and assessment of MS and NMS in this population. The MDS-NMS is a clinician-reported outcome measure designed specifically for systematic assessment of NMS burden across 13 distinct NMS domains. However, suitability of the MDS-NMS in an advanced PD population has not yet been established. In this study, PwAP are defined as those diagnosed ≥5 years who despite optimized standard of care still experience significant symptom fluctuations.

Method: A steering committee was established including patient advocates and key opinion leaders to inform key study activities. Combined qualitative concept elicitation and cognitive debriefing interviews were conducted with PwAP (n=20), caregivers of PwAP (n=15) and expert clinicians (n=10) across the US, Spain, and Germany. Concept elicitation interviews further explored the experience of advanced PD, including which NMS were considered most bothersome and important to treat. Cognitive debriefing interviews explored the relevance and meaningfulness of the MDS-NMS to generate evidence of its suitability in advanced PD.

Results: Fatigue was one of the most frequently reported NMS across the populations, and fatigue and cognitive functioning were consistently reported as the most bothersome and important to treat. Most participants indicated the majority of MDS-NMS subscales were relevant, and that changes in most subscales would be important.

Conclusion: This study provides valuable multi-perspective insight into the patient experience of NMS in advanced PD across three countries, enabling identification of key concepts to prioritize for assessment in PD clinical trials and supporting suitability of the MDS-NMS for use in this population.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/qualitative-research-in-advanced-parkinsons-disease-exploring-salient-symptoms-and-suitability-of-the-mds-nms-from-the-patient-caregiver-and-clinician-perspective/