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Published in: BMC Neurology 1/2022

Open Access 01-12-2022 | Myotonic Dystrophy | Research

Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1

Authors: Haruo Fujino, Toshio Saito, Masanori P. Takahashi, Hiroto Takada, Takahiro Nakayama, Osamu Imura, Tsuyoshi Matsumura

Published in: BMC Neurology | Issue 1/2022

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Abstract

Background

Although functional impairment in patients with myotonic dystrophy is an important determinant of the quality of life (QoL), patients’ subjective evaluation of their symptoms may also affect their QoL. The aim of this study was to investigate the association between subjective symptom impact and the QoL of patients with myotonic dystrophy, after controlling for functional impairment.

Methods

Eligible patients with myotonic dystrophy type 1 (DM1) were recruited from four hospitals in Japan. The subjective symptom impact of four symptoms (muscle weakness, fatigue, pain, and myotonia) and overall QoL were evaluated using the Individualized Neuromuscular Quality of Life (INQoL) questionnaire. Functional impairment was assessed using the modified Rankin Scale.

Results

Seventy-seven patients with DM1 were included in this study. Overall QoL was significantly associated with subjective symptom impact of muscular weakness, fatigue, pain, myotonia, swallowing difficulty, and droopy eyelids. In the regression models, disease duration (beta = 0.11) and moderate to severe functional impairment (beta = 0.33) explained a significant part of the overall QoL. Furthermore, muscular weakness, fatigue, and myotonia significantly explained additional variance of the overall QoL (beta = 0.17–0.43).

Conclusions

Subjective symptom impact and functional impairment are independent features influencing the QoL of Japanese patients with DM1.
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Metadata
Title
Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1
Authors
Haruo Fujino
Toshio Saito
Masanori P. Takahashi
Hiroto Takada
Takahiro Nakayama
Osamu Imura
Tsuyoshi Matsumura
Publication date
01-12-2022
Publisher
BioMed Central
Published in
BMC Neurology / Issue 1/2022
Electronic ISSN: 1471-2377
DOI
https://doi.org/10.1186/s12883-022-02581-w

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