Abstract
Obstructive sleep apnea is a condition which affects an estimated 50% of children with Down syndrome, particularly in their early years. It can cause serious sequelae in affected children but may not be recognized by parents or health professionals. Routine screening has been recommended in some countries, but is not standard practice. There are no validated questionnaire-based tools available to screen this population of children for this particular sleep-related disorder. Using existing validated sleep questionnaire items, we have developed a questionnaire to screen children with Down syndrome up to 6 years of age for obstructive sleep apnea, which corresponds with the recommendations made in UK national guidelines. This paper describes these first steps in demonstrating content validity for a new questionnaire, which will be subject to further in-depth psychometric analysis. Relevance, clarity, and age appropriateness were rated for 33 items using a content review questionnaire by a group of 18 health professionals with expertise in respiratory pediatrics, neurodevelopmental pediatrics, and sleep physiology. The content validity index was calculated for individual items and contributed to decisions about item inclusion. Scale level content validity index for the modified questionnaire of 14 items was at an accepted level of 0.78. Two parents of children with Down syndrome took part in cognitive interviews after completing the modified questionnaire. We describe the development of this 14 item questionnaire to screen for OSA in children with DS from infancy to 6 years.
Highlights
Obstructive sleep apnea (OSA) is characterized by repetitive partial or complete airway collapse during sleep despite continued respiratory effort
A detailed description of the steps required was outlined by Spruyt and Gozal in their paper on the development of pediatric sleep questionnaires [21], as well as by other authors [22]
Content Validity Index The content validity index (CVI) calculated for each item (n = 33) ranged from 0.43 to 0.94
Summary
Obstructive sleep apnea (OSA) is characterized by repetitive partial (hypopnea) or complete (apnea) airway collapse during sleep despite continued respiratory effort. It is believed to affect over 50% of children with Down syndrome (DS) compared to around 1–3% of typically developing children [1,2,3]. Causation in DS is multi-factorial with hypotonia, obesity and craniofacial anatomy all contributing to collapse of a narrow airway, further exacerbated in the pre-school years by growth of the adenotonsillar tissue. Children with DS are at increased risk of adverse complications of OSA [4, 5]. Up to 60% of children with DS have congenital heart disease putting them at increased risk of developing pulmonary hypertension [4]. Cognitive and behavioral sequelae of OSA seen in typically
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