Objective: The primary objective of this project is to validate and personalise the existing MDS-NMS scale, originally developed for Parkinson’s disease, for use in people with Huntington’s disease (HD).

Background: Although motor manifestations are the most prominently recognised symptoms in people with Huntington’s disease (PwHD), non-motor symptoms are being increasingly recognised for their substantial role in disease progression and burden. These symptoms may manifest at varying disease stages and can precede the onset of motor symptoms by several years. Presently, a distinct instrument tailored for the assessment of non-motor symptoms in PwHD is lacking, as existing instruments predominantly focus on neuropsychiatric symptoms, potentially limiting the comprehensive understanding of disease manifestation.

Method: This project entails an open cross-sectional study involving a sample comprising HD experts and PwHD, organized into four phases. In Phase 1, HD experts (n=10) and PwHD (n=6) will collaboratively explore the feasibility, phrasing, comprehension, and appropriateness of scale questions and subsequent removal of questions not relevant to PwHD. Phase 2 will involve a pilot study employing the initial HD-specific scale in PwHD (n=10) alongside healthy controls (n=10). Subsequent phases, 3 and 4, will encompass comprehensive analyses of acceptability, dimensionality, internal consistency, reliability, and precision, conducted on a larger sample comprising PwHD (n=50) and healthy participants (n=25). The Movement Disorders Society has granted permission for use of the MDS-NMS for this purpose.

Results: Phase 1 is anticipated to yield an HD-specific scale as the primary outcome following qualitative analysis of the insights provided by healthcare professionals and PwHD. Phase 2 is expected to deliver preliminary validity data of the scale based on pilot sample observations, facilitating potential further item omission as necessary. Phases 3 and 4 are foreseen to supply validation data essential for the scale’s application within a clinical setting.

Conclusion: The proposed outcomes revolve around the establishment and validation of the HD-specific MDS-NMS as a user-friendly, time-efficient, and cost-effective clinical tool for non-motor symptom assessment. This endeavour seeks to position the MDS-NMS as a reliable metric for the clinical endophenotyping of non-motor symptoms in PwHD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/non-motor-symptoms-in-people-with-huntingtons-disease-use-and-validation-of-the-mds-non-motor-scale-mds-nms/