French translation and cross‐cultural adaptation of The Myotonic Dystrophy Health Index

Gagnon, Cynthia; Tremblay, Marjolaine; Côté, Isabelle; Heatwole, Chad

doi:10.1002/mus.25994

Cited by 7 publications

(6 citation statements)

References 18 publications

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“…In fact, disease perception is one of the determinants of psychological distress and/or coping [ 7 , 33 ]. Therefore, although definitive evidence for the effectiveness of psychosocial interventions to improve disease perception in patients with muscular diseases is unavailable [ 34 ], it is plausible that psychosocial interventions could optimize QoL in these patients [ 35 , 36 ]. A large international study demonstrated that cognitive behavior therapy for patients with myotonic dystrophy improved physical activity and participation, but it did not improve their QoL and disease burden [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2022

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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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Section: Discussionmentioning

confidence: 99%

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

et al. 2022

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“…The Myotonic Dystrophy Health Index (MDHI) is a disease-specific patient reported outcome measure designed specifically for use in myotonic dystrophy clinical trials [6,7]. It has been identified during OMMYD-2 [3] as potentially interesting and was translated into French and Italian at this time [8,9]. Given the prior validation of this instrument, it has been identified by the NIH's Common Data Elements group as one of only four outcome measures that are highly recommended for use in DM1 studies and the only outcome measure that is highly recommended as an outcome/endpoint to measure multifactorial patient reported Burden of Disease.…”

Section: Outcome Measures Myotonic Dystrophy Health Indexmentioning

confidence: 99%

Report of the third outcome measures in myotonic dystrophy type 1 (OMMYD-3) international workshop Paris, France, June 8, 2015

Gagnon

Heatwole

Hébert

et al. 2018

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“…First, although the INQoL covers the major components of QoL for patients with DM1, the relative importance of contributing factors could be affected by the underlying concept of QoL measured. Recently, the Myotonic Dystrophy Health Index, which measures the burden of disease in myotonic dystrophy, is available and has been validated in several languages [33][34][35][36]. The INQoL is rather a measure of how disease symptoms impact on the patient's perspective.…”

Section: Limitationsmentioning

confidence: 99%

Subjective symptom impact on quality of life in patients with myotonic dystrophy

Fujino¹,

Saitô²,

Takahashi³

et al. 2018

Preprint

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Background: Although functional impairment in patients with myotonic dystrophy is an important determinant of quality of life (QoL), it is possible that QoL could further be influenced by the subjective evaluation of symptoms. The aim of this study was to investigate the subjective symptom impact on the QoL, after controlling for functional impairment. Methods: Eligible patients with myotonic dystrophy type 1 (DM1) were recruited from four hospitals in Japan. Subjective symptom impact across four domains (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: Eighty-six patients with DM1 were included in this study. On multiple regression analysis, a portion of the variance in the overall QoL was significantly accounted for by demographic variables and functional impairment (adjusted R2 = 0.32). In addition to these variables, subjective symptom impact (muscular weakness, fatigue, and myotonia) explained additional variance in the overall QoL (adjusted R2 = 0.80). Difficulties in activities of daily living and participation caused by each symptom consistently predicted overall QoL across three symptom domains (muscular weakness, fatigue, and myotonia). Conclusions: Subjective symptom impact needs to be considered, in addition to functional impairment, when evaluating the QoL of patients with DM1.

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French translation and cross‐cultural adaptation of The Myotonic Dystrophy Health Index

Abstract: The French version of the MDHI is an optimal translation of the original instrument that is acceptable to native patients and ready for clinical trial use. Muscle Nerve 57: 686-689, 2018.

Cited by 7 publications

References 18 publications

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

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

Report of the third outcome measures in myotonic dystrophy type 1 (OMMYD-3) international workshop Paris, France, June 8, 2015

Subjective symptom impact on quality of life in patients with myotonic dystrophy

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