Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings

Table 1 Characteristics of the sample

Characteristics	M	SD
Patient’s age (years)	10.3	4.66
Sibling’s age (years)	13.3	3.20
Mother’s age (years)	41.1	7.13
Father’s age (years)	43.5	6.99
Time on technology (years)	5.9	4.85
	n	%
Types of ventilation
No ventilation	22	35.5
Mask ventilation	21	30.6
Tracheostomy	19	33.9
Duration of ventilation per day
< than 10 h a day	16	25.8
10 to 24 h a day	16	25.8
24 h a day	8	12.9
Frequency of diagnoses
RVD	50	80.6
CRRD	6	9.7
OVD	6	9.7

Note. RVD Restrictive ventilation diseases (Achondroplasia, Autosomal dominant axonal demyelinating neuropathy, Campomelic dysplasia, Centronuclear myopathy, Congenital muscular dystrophy type 1A, Facioscapulohumeral dystrophy, Listeriosis, Mitochondrial cytopathy, Muscular dystrophy type Becker-Kiener, Muscular dystrophy type Duchenne, Myasthenia gravis, Nemaline myopathy, Perinatal asphyxia, Spinal muscular atrophy, Traumatic spinal cord injury, Congenital myopathy), CRRD Central respiratory regulation diseases (Bickerstaff brainstem encephalitis, Dandy-Walker malformation, Joubert syndrome, Leigh syndrome, Ondine Syndrome), OVD Obstructive ventilatory disorders (Congenital laryngeal palsy, Congenital tracheomalacia, Mucopolysaccharidosis type I)

ISSN: 1471-2431