Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1
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 sy...
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| Format: | Article |
| Language: | English |
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BMC
2022-02-01
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| Series: | BMC Neurology |
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| Online Access: | https://doi.org/10.1186/s12883-022-02581-w |
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| author | Haruo Fujino Toshio Saito Masanori P. Takahashi Hiroto Takada Takahiro Nakayama Osamu Imura Tsuyoshi Matsumura |
| author_facet | Haruo Fujino Toshio Saito Masanori P. Takahashi Hiroto Takada Takahiro Nakayama Osamu Imura Tsuyoshi Matsumura |
| author_sort | Haruo Fujino |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-23T23:55:50Z |
| format | Article |
| id | doaj.art-367b90097d8f485297d09e2776e1daf3 |
| institution | Directory Open Access Journal |
| issn | 1471-2377 |
| language | English |
| last_indexed | 2024-12-23T23:55:50Z |
| publishDate | 2022-02-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Neurology |
| spelling | doaj.art-367b90097d8f485297d09e2776e1daf32022-12-21T17:25:16ZengBMCBMC Neurology1471-23772022-02-012211710.1186/s12883-022-02581-wQuality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1Haruo Fujino0Toshio Saito1Masanori P. Takahashi2Hiroto Takada3Takahiro Nakayama4Osamu Imura5Tsuyoshi Matsumura6Department of Child Development, United Graduate School of Child Development, Osaka UniversityDivision of Child Neurology, National Hospital Organization Osaka Toneyama Medical CenterDepartment of Clinical Laboratory and Biomedical Sciences, Osaka University Graduate School of MedicineDepartment of Neurology, National Hospital Organization Aomori National HospitalDepartment of Neurology, Yokohama Rosai HospitalGraduate School of Human Sciences, Osaka UniversityDepartment of Neurology, National Hospital Organization Osaka Toneyama Medical CenterAbstract 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.https://doi.org/10.1186/s12883-022-02581-wMyotonic dystrophyNeuromuscular diseasesPatient-reported outcome measuresQuality of lifeSymptom impact |
| spellingShingle | Haruo Fujino Toshio Saito Masanori P. Takahashi Hiroto Takada Takahiro Nakayama Osamu Imura Tsuyoshi Matsumura Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1 BMC Neurology Myotonic dystrophy Neuromuscular diseases Patient-reported outcome measures Quality of life Symptom impact |
| title | Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1 |
| title_full | Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1 |
| title_fullStr | Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1 |
| title_full_unstemmed | Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1 |
| title_short | Quality of life and subjective symptom impact in Japanese patients with myotonic dystrophy type 1 |
| title_sort | quality of life and subjective symptom impact in japanese patients with myotonic dystrophy type 1 |
| topic | Myotonic dystrophy Neuromuscular diseases Patient-reported outcome measures Quality of life Symptom impact |
| url | https://doi.org/10.1186/s12883-022-02581-w |
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