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)