Category: Huntington's Disease
Objective: Explore associations between remote monitoring of cognitive and motor functions and digitally administered, self-assessed EuroQol 5-dimension 5-level (EQ-5D-5L) items.
Background: Assessment of cognitive and motor symptoms in neurodegenerative diseases using novel smartphone-based active tests has the potential to monitor disease progression and therapeutic drug interventions. In Huntington’s disease (HD), it has been demonstrated that the Roche HD digital Monitoring Platform (dMP) can provide reliable and valid remote monitoring of HD symptoms. The question remains how these measures relate to the patients’ own perception of health-related quality of life (HRQoL) impairments.
Method: Non-interventional data from three clinical studies were pooled: the pre-drug screening phase of an open-label extension study evaluating tominersen (NCT03342053) and two observational cohorts: HD Natural History Study (NCT03664804) and Digital-HD (manifest HD only). Data from 173 patients were analysed. Participants completed weekly EQ-5D-5L and daily active tests on a smartphone. The data from the first 2 weeks’ post-screening visit were analysed. EQ-5D-5L data were aggregated over the 2-week period and patients were categorised as ‘impaired’ or ‘non-impaired’ per EQ-5D-5L item (mean=0: non-impaired; or mean >0: impaired). For each of the eight active tests of the HD dMP, the groups of ‘impaired’ and ‘non-impaired’ patients were compared with Mann-Whitney U-tests based on a single, a priori defined metric per test.
Results: Significant differences for nearly all digital cognitive and motor tests were identified when patients were grouped by the EQ-5D-5L items ‘mobility’ (p<0.05) and ‘self-care’ (p<0.05). For ‘usual activities’, significant differences were identified for the cognitive tests (p<0.05). No significant differences were identified when comparing patients grouped by ‘pain/discomfort’ or ‘anxiety/depression’.
Conclusion: The absence of association between the ‘pain/discomfort’ and ‘anxiety/depression’ items is to be expected, as none of the dMP tests are designed to capture these domains. The other results, however, provide evidence of known-groups validity and demonstrate a link between smartphone-based active tests of cognitive and motor skills, and patients’ self-perceived impairment in these HRQoL domains.
To cite this abstract in AMA style:F. Riese, J. Rennig, F. Lipsmeier, A. Bamdadian, S. Schobel, C. Gossens, P. Weydt, J. Dorn, E. Wild, D. Trundell, C. Simillion, M. Lindemann. Using patient-reported quality of life outcomes to assess the validity of smartphone-based remote assessment of motor and cognitive performance in manifest Huntington’s disease patients [abstract]. Mov Disord. 2021; 36 (suppl 1). https://www.mdsabstracts.org/abstract/using-patient-reported-quality-of-life-outcomes-to-assess-the-validity-of-smartphone-based-remote-assessment-of-motor-and-cognitive-performance-in-manifest-huntingtons-disease-patients/. Accessed September 29, 2023.
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