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Real-world experience with Deutetrabenazine management in patients with Huntington’s disease using video-based telemedicine

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Abstract

Background

Huntington’s disease (HD) is a rare progressive neurological disorder, and telemedicine has the potential to improve the quality of care for patients with HD. Deutetrabenazine (DTBZ) can reduce chorea symptoms in HD; however, there is limited experience with this medication in Asian countries.

Methods

Retrospective and prospective studies were employed to explore the feasibility and reliability of a video-based telemedicine system for HD patient care. Reliability was demonstrated through consistency between selected-item scores (SIS) and total motor scores (TMS) and the agreement of scores obtained from hospital and home videos. Finally, a single-centre real-world DTBZ management study was conducted based on the telemedicine system to explore the efficacy of DTBZ in patients with HD.

Results

There were 77 patients included in the retrospective study, and a strong correlation was found between SIS and TMS (r = 0.911, P < 0.0001), indicating good representativeness. There were 32 patients enrolled in the prospective study. The reliability was further confirmed, indicated by correlations between SIS and TMS (r = 0.964, P < 0.0001) and consistency of SIS derived from the in-person and virtual visits (r = 0.969, P < 0.0001). There were 17 patients included in the DTBZ study with a mean 1.41 (95% confidence interval, 0.37–2.46) improvement in chorea score and reported treatment success.

Conclusions

A video-based telemedicine system is a feasible and reliable option for HD patient care. It may also be used for drug management as a supplementary tool for clinical visits.

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Data availability

The data that support the findings of this study are available on request from the corresponding author.

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Acknowledgements

The authors thank all the patients and caregivers participating the study. The authors thank Prof. Jean-marc Burgunder and Prof. Xunhua Li for providing the suggestions for the study.

Funding

This study was supported by grants from the Guangdong Provincial Key Laboratory of Diagnosis and Treatment of Major Neurological Diseases (2020B1212060017), the National Natural Science Foundation of China (No. 81873751, 82071255), Guangdong Provincial Clinical Research Center for Neurological Diseases (2020B1111170002), Southern China International Joint Research Center for Early Intervention and Functional Rehabilitation of Neurological Diseases (2015B050501003 and 2020A0505020004), Guangdong Provincial Engineering Center for Major Neurological Disease Treatment, Guangdong Provincial Translational Medicine Innovation Platform for Diagnosis and Treatment of Major Neurological Disease, and Guangzhou Clinical Research and Translational Center for Major Neurological Diseases (201604020010).

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  1. Lishan Lin and Mansi Cai contributed equally to this work.

Authors and Affiliations

  1. Department of Neurology, Guangdong Provincial Key Laboratory of Diagnosis and Treatment of Major Neurological Diseases, Department and Key Discipline of Neurology, The First Affiliated Hospital, National Key Clinical, Sun Yat-Sen University, Guangzhou, China

    Lishan Lin, Mansi Cai, Fengjuan Su, Yucheng Li, Yue Luo, Dingbang Chen & Zhong Pei

  2. Department of Neurology, The First Affiliated Hospital of Guangzhou Medical University, Guangzhou, China

    Tengteng Wu

  3. Zhongshan School of Medicine, Sun Yat-Sen University, Guangzhou, China

    Kang Yuan

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Contributions

LLS and CMS prepared the manuscript. LLS, CMS, SFJ, WTT, YK, LYC, and LY collected the data and did the statistical analysis. Prof. CDB revised the manuscript. Prof. PZ reviewed the results and made critical comments on the manuscript. Prof. CDB takes responsibility for the integrity of the work as a whole from inception to published article.

Corresponding author

Correspondence to Dingbang Chen.

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Ethics approval

Approval was obtained from the Independent Ethics Committee for Clinical Research and Animal Trials of our hospital (approval number: [2022]594). The procedures used in this study adhere to the tenets of the Declaration of Helsinki.

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Informed consent was obtained from all individual participants included in the study.

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Lin, L., Cai, M., Su, F. et al. Real-world experience with Deutetrabenazine management in patients with Huntington’s disease using video-based telemedicine. Neurol Sci 45, 2047–2055 (2024). https://doi.org/10.1007/s10072-023-07179-9

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