Validation of the Individualized Neuromuscular Quality of Life Questionnaire in Korean Patients With Genetic Neuromuscular Diseases
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Background and Purpose The Individualized Neuromuscular Quality of Life questionnaire (INQoL) is a widely used measure of the quality of life in patients with neuromuscular diseases. The purpose of this study was to translate and validate the Korean version of INQoL in Korean patients with neuromuscular diseases. Methods We translated the original INQoL version into Korean while applying appropriate language adaptations. The internal consistency, known-group validity, and test-retest reliability were also assessed. Construct validity was measured using the modified Rankin Scale (mRS) score and the manual muscle testing (MMT)-sum score based on the Medical Research Council scale, and concurrent validity was measured using the 36-item Short Form Survey (SF-36) questionnaire. Results This study enrolled 193 patients. The coefficients for internal consistency (Cronbach’s α=0.805 to 0.987) and test-retest reliability (Spearman’s ρ=0.453 to 0.886) were adequately high for all subscales except in the ‘treatment effects’ dimension. INQoL subscales other than those for locking, droopy eyelids, double vision, and swallowing difficulties were significantly associated with their relevant SF-36 domains (Spearman’s ρ=-0.274 to -0.833). Functional status and muscle strength were most strongly associated with independence (Spearman’s ρ=0.753 and p<0.001 for mRS score, Spearman’s ρ=-0.741 and p<0.001 for MMT-sum score). Conclusions The Korean INQoL is a reliable and validated measurement tool for Korean patients with neuromuscular diseases.
Abstract
Background and Purpose The Individualized Neuromuscular Quality of Life questionnaire (INQoL) is a widely used measure of the quality of life in patients with neuromuscular diseases. The purpose of this study was to translate and validate the Korean version of INQoL in Korean patients with neuromuscular diseases. Methods We translated the original INQoL version into Korean while applying appropriate language adaptations. The internal consistency, known-group validity, and test-retest reliability were also assessed. Construct validity was measured using the modified Rankin Scale (mRS) score and the manual muscle testing (MMT)-sum score based on the Medical Research Council scale, and concurrent validity was measured using the 36-item Short Form Survey (SF-36) questionnaire. Results This study enrolled 193 patients. The coefficients for internal consistency (Cronbach’s α=0.805 to 0.987) and test-retest reliability (Spearman’s ρ=0.453 to 0.886) were adequately high for all subscales except in the ‘treatment effects’ dimension. INQoL subscales other than those for locking, droopy eyelids, double vision, and swallowing difficulties were significantly associated with their relevant SF-36 domains (Spearman’s ρ=-0.274 to -0.833). Functional status and muscle strength were most strongly associated with independence (Spearman’s ρ=0.753 and p<0.001 for mRS score, Spearman’s ρ=-0.741 and p<0.001 for MMT-sum score). Conclusions The Korean INQoL is a reliable and validated measurement tool for Korean patients with neuromuscular diseases.
참고문헌 (20)
- Benarroch L, "The 2021 version of the gene table of neuromuscular disorders(nuclear genome)", Neuromuscul Disord, 30, pp.1008~1048 (2020)
- Taylor VR, "Measuring healthy days; population assessment of healthrelated quality of life", US Centers for Disease Control and Prevention, ~ (2000)
- Gelber RD, "Recent Advances in Clinical Trial Design and Analysis", pp.225~246 (1995), Springer
- Vincent KA, "Construction and validation of a quality of life questionnaire for neuromuscular disease(INQoL)", Neurology, 68, pp.1051~1057 (2007)
- Landfeldt E, "Disease burden of myotonic dystrophy type 1", J Neurol, 266, pp.998~1006 (2019)
- Kacar A, "Neuromuscular disease-specific questionnaire to assess quality of life in patients with chronic inflammatory demyelinating polyradiculoneuropathy", J Peripher Nerv Syst, 23, pp.11~16 (2018)
- Seesing FM, "The individualized neuromuscular quality of life questionnaire : cultural translation and psychometric validation for the Dutch population", Muscle Nerve, 51, pp.496~500 (2015)
- Sansone VA, "Italian validation of INQoL, a quality of life questionnaire for adults with muscle diseases", Eur J Neurol, 17, pp.1178~1187 (2010)
- Fagoaga J, "Translation and validation of the Individualised Neuromuscular Quality of Life scale for the Spanish population : quality of life assessment for persons with neuromuscular diseases", Rev Neurol, 64, pp.194~200 (2017)
- Sadjadi R, "Validation of the individualised neuromuscular quality of life for the USA with comparison of the impact of muscle disease on those living in USA versus UK", Health Qual Life Outcomes, 9, pp.114~ (2011)
- Peric S, "Serbian validation of the Individualized Neuromuscular Quality of Life Questionnaire(INQoL)in adults with myotonic dystrophy type 1", J Neurol Res, 1, pp.153~160 (2011)
- Fujino H, "Validation of the Individualized Neuromuscular Quality of Life in Japanese patients with myotonic dystrophy", Muscle Nerve, 58, pp.56~63 (2018)
- Guillemin F, "Cross-cultural adaptation of health-related quality of life measures : literature review and proposed guidelines", J Clin Epidemiol, 46, pp.1417~1432 (1993)
- Beaton DE, "Guidelines for the process of cross-cultural adaptation of self-report measures", Spine(Phila Pa 1976), 25, pp.3186~3191 (2000)
- Brooke MH, "Clinical trial in Duchenne dystrophy. I. The design of the protocol", Muscle Nerve, 4, pp.186~197 (1981)
- Nam BH, "Testing the validity of the Korean SF-36 health survey", J Health Info Stat, 28, pp.3~25 (2003)
- Han CW, "Development of the Korean version of short-form 36-item health survey : health related QOL of healthy elderly people and elderly patients in Korea", Tohoku J Exp Med, 203, pp.189~194 (2004)
- Seesing FM, "Shared medical appointments improve QOL in neuromuscular patients : a randomized controlled trial", Neurology, 83, pp.240~246 (2014)
- Moradi K, "Validation of Persian Individualized Neuromuscular Quality of Life in patients with muscular dystrophies", Curr J Neurol, 19, pp.13~19 (2020)
- Anthoine E, "Sample size used to validate a scale : a review of publications on newly-developed patient reported outcomes measures", Health Qual Life Outcomes, 12, pp.176~ (2014)