Table 1 Quality of life instruments (n = 15)
Authors/ Year | Title | Country | Study design | Sample size/ Age | Disease | QoL Instruments |
|---|---|---|---|---|---|---|
Vega, et al., 2020 [27] | Quality of life in children and adolescents with Spinal Muscular Atrophy (Calidad de vida en niños y adolescentes con Atrofia Muscular Espinal) | Chile | Cross-sectional observational | n = 38 2 to 18 years | Spinal Amiotrophy I, II, III | Pediatric Quality of Life (PedsQLTM) Inventory 3.0 Neuromuscular Module |
Bendixen, et al., 2012 [28] | Participation and quality of life in children with Duchenne muscular dystrophy using the International Classification of Functioning, Disability, and Health | USA | Cohort | n = 50 5 to 15 years n = 25 5 to 15 years | Duchenne muscular dystrophy Healthy children | Pediatric Quality of Life Inventory TM 4.0 (PedsQL) |
Messina, et al., 2016 [29] | Health-related quality of life and functional changes in DMD: A 12-month longitudinal cohort study | Italy | Prospective longitudinal multicenter cohort | n = 98 5 to 13 years | Duchenne muscular dystrophy | Pediatric Quality of Life Generic Core Scale (PedsQL TM 4.0) Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL TM) |
Thongsing, et al., 2020 [30] | Reliability and validity of the Thai pediatric quality of life inventory™ 3.0 neuromuscular module | Thailand | Cross-sectional | n = 103 2 to 18 years | Duchenne muscular dystrophy Charcot-Marie-Tooth Spinal Amyotrophy Other neuromuscular diseases | Pediatric Quality of Life Multidimensional Fatigue Scale (PedsQL TM MFS) |
Thongsing, et al., 2019 [31] | Reliability and validity of the Thai version of the Pediatric Quality of Life inventory™ 3.0 Duchenne Muscular Dystrophy module in Thai children with Duchenne Muscular Dystrophy | Thailand | Cross-sectional | n = 56 5 to 18 years | Duchenne muscular dystrophy | Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQLTM) |
Köken, et al., 2021 [32] | Clinical features and quality of life in duchenne and becker muscular dystrophy patients from a tertiary center in Turkey | Turkey | Cross-sectional descriptive | n = 20 8 to 18 years n = 20 8 to 18 years | Duchenne muscular dystrophy Becker muscular dystrophy Healthy children | Módulo DMD do PedsQL™ 3.0 Pediatric Quality of Life Inventory (PedsQL) 4.0 |
Mozzoni, et al., 2021 [33] | Pediatric Quality of Life Inventory™, Neuromuscular Module, version 3.0 in Spanish for Argentina | Argentina | Observational, analytical and prospective | n = 185 2 to 18 years | Duchenne muscular dystrophy Other types of muscular dystrophy Spinal Amyotrophy Other myopathies | Pediatric Quality of Life (PedsQLTM) Inventory 3.0 Neuromuscular Module |
Uzark, et al., 2012 [34] | Health-Related Quality of Life in Children and Adolescents With Duchenne Muscular Dystrophy | EUA | - | n = 117 6 to 18 years | Duchenne muscular dystrophy | PedsQL TM 4.0 Generic Core Scales (GCS) |
Hu, et al., 2013 [35] | Reliability and validity of the Chinese version of the pediatric quality of life inventoryTM (PedsQLTM) 3.0 neuromuscular module in children with Duchenne muscular dystrophy | China | - | n = 56 2 to 18 years | Duchenne muscular dystrophy | Pediatric Quality of Life (PedsQLTM) Inventory 3.0 Neuromuscular Module |
Kocova, et al., 2014 [36] | Health-related quality of life in children and adolescents with spinal muscular atrophy in the Czech Republic | Czech Republic | - | n = 35 3 to 18 years | Spinal Amyotrophy I, II, III | Pediatric Quality of Life (PedsQLTM) Inventory 3.0 Neuromuscular Module |
Lim, et al., 2014 [37] | The level of agreement between child self-reports and parent proxy-reports of health-related quality of life in boys with Duchenne muscular dystrophy | USA | - | n = 63 6 to 16 years | Duchenne muscular dystrophy | Pediatric Quality of Life Inventory (PedsQL) 4.0 |
Orcesi et al., 2014 [38] | A New Self-Report Quality of Life Questionnaire for Children with Neuromuscular Disorders: Presentation of the Instrument, Rationale for Its Development, and Some Preliminary Results | Italy | - | n = 78 5 to 13 years n = 81 5 to 13 years | Genetic disorders Nervous disorders Spinal Amyotrophy Healthy children | SOLE Questionnaire |
Zamani, et al., 2016 [39] | The quality of life in boys with Duchenne muscular dystrophy | Iran | - | n = 85 8 to 18 years n = 136 8 to 18 years | Duchenne muscular dystrophy Healthy children | KIDSCREEN |
Simon, et al., 2017 [40] | Translation and validation of the life satisfaction index for adolescents scale with neuromuscular disorders: LSI-A Brazil | Brazil | - | n = 82 5 to 18 years | Duchenne muscular dystrophy Waist muscular dystrophies Spinal muscular atrophy | Life Satisfaction Index for Adolescents scale( LSI-A) |
Liang, et al., 2019 [41] | Health-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families | China | - | n = 15 2 to 18 years n = 15 2 to 18 years | Duchenne muscular dystrophy Healthy children | Pediatric Quality of Life Inventory (PedsQL) 4.0 (Chinese) |