The PedsQL™ DMD 3.0 module has 4 scales assessing the ‘Daily Activities’, ‘Treatment Barriers’, ‘Worry’, and ‘Communication’ of the child during the previous 4 weeks. The PedsQL™ 3.0 DMD Module is designed to assess quality of life in children with DMD from 5 to 18 years old. The Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scales questionnaire yields information on the physical, emotional, social, and school functioning of children during the previous 4 weeks. Generic HRQoL measures are important for assessing and comparing outcomes across different populations and interventions, while disease-specific HRQoL measures assess the special states and concerns of specific diagnostic groups. There are multiple HRQoL questionnaires with both generic and disease-specific versions. Since disease progression in DMD has major impacts on patients and their families, HRQoL measurement is important for understanding and assessing difficulties that require professional intervention. HRQoL is an important outcome assessment in disease progression evaluation, clinical trials and research in pediatric populations with chronic health conditions. Quality of life (QoL) refers to all aspects of life, including non-health related issues, while health-related QoL (HRQoL) focuses on the impacts that illness and treatment may have on QoL. Declining motor function leads to a considerable physical, psychological and financial burden for both affected children and their families. It is a chronic progressive illness that results in the loss of proximal muscle motor function. The reported incidence of DMD ranges from 10.71 to 27.78 per 100,000. The PedsQL™ 3.0 DMD Module Thai version is a reliable and valid measure of disease-specific health-related quality of life in Thai children with Duchenne muscular dystrophy.ĭuchenne muscular dystrophy (DMD) is the most common genetic neuromuscular disorder in children. The child self-reports were in acceptable agreement with the parent proxy reports for most subscales (ICC range 0.49–0.81). ![]() The mean total scale score was 66.03 for ambulatory children and 55.87 ( P = 0.08) for non-ambulatory children according to child self-reports and 70.01 (ambulatory) and 54.29 (non-ambulatory) ( P ≤ 0.01) according to parent proxy reports. Test-retest reliability showed good agreement, with the following intraclass correlation coefficients (ICCs) for the total score (calculated using all subscales from the child reports and parent reports): child report ICCs = 0.74 and parent report ICCs = 0.88. An acceptable level of internal reliability was achieved, as measured by α > 0.7 (total score: child report α = 0.88, parent report α = 0.92). ![]() Psychometric properties were established, and a re-test was performed within 2–4 weeks. The Thai version of the scale was administered to children with DMD and their parents at the neuromuscular clinic at Siriraj Hospital and during the annual DMD Day meeting. The Thai translation of the PedsQL™ 3.0 Duchenne Muscular Dystrophy Module was performed in accordance with established guidelines using forward-back translation and was approved by the creator of the instrument. This study aimed to evaluate the reliability and validity of the Thai version of the PedsQL™ 3.0 DMD Module in Thai children aged 5–18 years. The Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 DMD Module is designed to assess quality of life in children with DMD. ![]() These impacts can be assessed using a disease-specific measure of health-related quality of life (HRQOL). This chronic illness may impact the physical, family, social and school life of affected children and their families. Duchenne Muscular Dystrophy (DMD) is the most common genetic neuromuscular disorder in children.
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