Objective: The aim of this study is to generate a conceptual framework that maps patient-relevant functional limitations to behavioral measures that can be captured with a digital health technology (DHT) tool.

Background: DHTs have the potential to assess signs and symptoms of PD objectively, reliably, and frequently. One critical aspect in the development of DHT outcome measures is to understand how they relate to PD symptoms that matter most to patients.

Method: In-depth concept elicitation telephone interviews and face-to-face semi-structured cognitive debriefing interviews will be conducted with patients to assess the relevance of specific DHT tasks to their condition. Patients will interact with the DHT and be asked to describe difficulties they experience when completing each task and how these relate to the difficulties they experience in their everyday lives. The interview data will be analyzed using thematic analysis methods, focusing on themes in the data that relate to PD symptoms and functional impacts. Finally, movement disorders specialists will review the findings to identify the specific DHT sensor features that neurobiologically map to the corresponding functional limitations reported by patients.

Results: This study is designed to retrospectively evaluate the content of a novel DHT tool from a patient perspective and to inform the selection of relevant features for future data analysis. This patient-centric approach aims to evaluate the comprehensiveness of the DHT tool and to ensure that the digital sensor features selected for a global severity score measure aspects of functioning relevant to patients.

Conclusion: Data from this qualitative study form the foundation of building a patient-relevant DHT-based outcome measure in PD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-experience-interviews-to-inform-a-digital-assessment-of-parkinsons-disease/