Abstract
BackgroundThe Pediatric Quality of Life InventoryTM (PedsQLTM) is a widely used instrument to measure pediatric health-related quality of life (HRQOL) in children aged 2 to 18 years. The current study aimed to evaluate the reliability and validity of the Chinese version of the PedsQLTM 3.0 Neuromuscular Module in children with Duchenne muscular dystrophy (DMD).MethodsThe PedsQLTM 3.0 Neuromuscular Module was translated into Chinese following PedsQLTM Measurement Model Translation Methodology. The Chinese version scale was administered to 56 children with DMD and their parents, and the psychometric properties were evaluated.ResultsThe missing value percentages for each item of the Chinese version scale ranged from 0.00% to 0.54%. Internal consistency reliability approached or exceeded the minimum reliability standard of α = 0.7 (child α = 0.81, parent α = 0.86). Test-retest reliability was satisfactory, with intraclass correlation coefficients (ICCs) of 0.66 for children and 0.88 for parents (P < 0.01). Correlation coefficients between iteims and their hypothesized subscales were higher than those with other subscales (P < 0.05). The subscale of “About My/My Child’s Neuromuscular Disease” significantly related to mobility and stair climbing status (Child t = 2.21, Parent t = 2.83, P < 0.05). The inter-correlations among the Chinese version of the PedsQLTM 3.0 Neuromuscular Module and the PedsQLTM 4.0 Generic Core Scales had medium to large effect sizes (P < 0.05). The child self-report scores were in moderate agreement with the parent proxy-report scores (ICC = 0.51, P < 0.05).ConclusionsThe Chinese version of the PedsQLTM 3.0 Neuromuscular Module has acceptable psychometric properties. It is a reliable measure of disease-specific HRQOL in Chinese children with DMD.
Highlights
The Pediatric Quality of Life InventoryTM (PedsQLTM) is a widely used instrument to measure pediatric health-related quality of life (HRQOL) in children aged 2 to 18 years
The aim of the current study was to investigate the psychometric properties of the Chinese version of the PedsQLTM 3.0 Neuromuscular Module in children with Duchenne muscular dystrophy (DMD) for use in conjunction with the Chinese version of the PedsQLTM 4.0 Generic Core Scales
The data described here support the feasibility, reliability, and validity of the Chinese version of the PedsQLTM 3.0 Neuromuscular Module in children with DMD living in mainland China
Summary
The Pediatric Quality of Life InventoryTM (PedsQLTM) is a widely used instrument to measure pediatric health-related quality of life (HRQOL) in children aged 2 to 18 years. The current study aimed to evaluate the reliability and validity of the Chinese version of the PedsQLTM 3.0 Neuromuscular Module in children with Duchenne muscular dystrophy (DMD). The Chinese version scale was administered to 56 children with DMD and their parents, and the psychometric properties were evaluated. There are no specific DMD treatments, corticosteroid, nutrition, respiratory, cardiac, orthopedic, rehabilitative, and psychosocial interventions have improved function, quality of life, health, and longevity. Health-related quality of life (HRQOL) is increasingly acknowledged as an important health outcome measure in clinical trials and health services research and evaluation involving children with neuromuscular disorders [9,10,11,12]. There is an emerging perspective that both generic and disease-specific HRQOL measures should be administered to pediatric patients with chronic health conditions in order to comprehensively evaluate patient HRQOL [14,15]
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