Quality of life in children with Robin Sequence

Introduction: Parents may play an important role during the management of children with Robin Sequence (RS). However, so far only one study has been done on both parent-reported health-related quality of life (HRQoL) and obstructive sleep apnea (OSA) symptoms in children with RS. Methods: Overall, 63 children with RS, aged 1 and 18, were included in this cross-sectional study. Fifty-three parents of children with RS with a median age of 8.9 [IQR 5.1-12.7] completed questionnaires on HRQoL (OSA-18) and symptoms of OSA (the Brouillette score) in their child with RS. Ten children between 12 and 18 years filled out the self-reported HRQoL questionnaire OSA-12. Results: At cross-section, 10 children still had respiratory problems. Overall, parents of children with RS reported a lower HRQoL in their child compared with parents in the general population. Parents of children with RS who still had respiratory problems, i.e. OSA or airway support, reported significantly worse OSA-18 scores compared with parents of RS children without OSA. Children with RS themselves (n = 10) reported less physical suffering and less emotional distress on the OSA-12 compared with children in the norm population. Parental perceptions of OSA-related symptoms were accurate, except for the incidence of snoring. In assessing snoring, the multidimensional OSA-18 sleep domain was more informative. Conclusions: Parents of children with RS reported a lower HRQoL in their child compared with parents in the general population. Parental perceptions of health and HRQoL in children with RS might have an additional value to recognize and treat respiratory problems.

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