Haruo Fujino1,2, Toshio Saito3, Masanori P Takahashi4,5, Hiroto Takada6, Takahiro Nakayama7, Katsuhisa Ogata8, Michael R Rose9, Osamu Imura2, Tsuyoshi Matsumura3. 1. Department of Special Needs Education, Oita University, 700 Dannoharu, Oita, Japan, 870-1192. 2. Graduate School of Human Sciences, Osaka University, Suita, Japan. 3. Department of Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Japan. 4. Department of Functional Diagnostic Science, Osaka University Graduate School of Medicine, Suita, Japan. 5. Department of Neurology, Osaka University Graduate School of Medicine, Suita, Japan. 6. Department of Neurology, National Hospital Organization Aomori National Hospital, Aomori, Japan. 7. Department of Neurology, Yokohama Rosai Hospital, Yokohama, Japan. 8. Department of Neurology, National Hospital Organization Higashisaitama Hospital, Hasuda, Saitama, Japan. 9. Department of Neurology, King's College Hospital, London, United Kingdom.
Abstract
INTRODUCTION: The Individualized Neuromuscular Quality of Life (INQoL) is used to measure the quality of life (QoL) of patients with neuromuscular disease. We conducted this study to translate and validate the Japanese version of the INQoL in patients with myotonic dystrophy. METHODS: Forward and backward translation, patient testing, and psychometric validation were performed. We used the 36-Item Short Form Health Survey (SF-36) and the modified Rankin scale for concurrent validation. RESULTS: The Japanese INQoL was administered to 90 adult patients. The coefficients for internal consistency and test-retest reliability were adequately high in most domains (Cronbach α 0.88-0.96 and intraclass coefficient 0.64-0.99). INQoL domains were moderately to strongly associated with relevant SF-36 subscales (Spearman's ρ -0.23 to -0.74). Symptom severity, disease duration, employment status, and use of a ventilator influenced overall QoL. DISCUSSION: The INQoL is a reliable and validated measure of QoL for Japanese patients with myotonic dystrophy. Muscle Nerve, 2018.
INTRODUCTION: The Individualized Neuromuscular Quality of Life (INQoL) is used to measure the quality of life (QoL) of patients with neuromuscular disease. We conducted this study to translate and validate the Japanese version of the INQoL in patients with myotonic dystrophy. METHODS: Forward and backward translation, patient testing, and psychometric validation were performed. We used the 36-Item Short Form Health Survey (SF-36) and the modified Rankin scale for concurrent validation. RESULTS: The Japanese INQoL was administered to 90 adult patients. The coefficients for internal consistency and test-retest reliability were adequately high in most domains (Cronbach α 0.88-0.96 and intraclass coefficient 0.64-0.99). INQoL domains were moderately to strongly associated with relevant SF-36 subscales (Spearman's ρ -0.23 to -0.74). Symptom severity, disease duration, employment status, and use of a ventilator influenced overall QoL. DISCUSSION: The INQoL is a reliable and validated measure of QoL for Japanese patients with myotonic dystrophy. Muscle Nerve, 2018.