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The Development of a Screening Questionnaire for Obstructive Sleep Apnea in Children with Down Syndrome
Emma Sanders1, Catherine Mary Hill2, Hazel Jean Evans2
1Faculty of Medicine, University of Southampton , Southampton , UK.
Insights
A new questionnaire helps screen young children with Down syndrome for obstructive sleep apnea (OSA), a common condition often missed. This tool aims to improve early detection and management of OSA in this vulnerable population.
Area of Science:
- Pediatrics
- Sleep Medicine
- Genetics
Background:
- Obstructive sleep apnea (OSA) affects approximately 50% of children with Down syndrome, potentially leading to serious health issues.
- Early recognition and management of OSA in children with Down syndrome are crucial but often hindered by a lack of screening tools.
- Current screening practices are inconsistent, with no validated questionnaires specifically designed for this population.
Purpose of the Study:
- To develop and demonstrate the content validity of a novel questionnaire for screening obstructive sleep apnea in children with Down syndrome up to six years of age.
- To align screening recommendations with UK national guidelines for pediatric sleep disorders.
- To provide a foundation for further psychometric analysis of the developed screening tool.
Main Methods:
- Development of a questionnaire using existing validated sleep items, tailored for children with Down syndrome.
- Content validity assessment by 18 health professionals with expertise in relevant pediatric subspecialties.
- Cognitive interviews with two parents of children with Down syndrome to evaluate the questionnaire's usability and clarity.
Main Results:
- A 14-item questionnaire was developed, demonstrating content validity at an accepted level (Scale Level Content Validity Index = 0.78).
- Expert review and parent feedback contributed to refining the questionnaire for relevance, clarity, and age-appropriateness.
- The study successfully established initial content validity for the new screening tool.
Conclusions:
- The developed 14-item questionnaire represents a promising tool for screening obstructive sleep apnea in infants and young children with Down syndrome.
- This tool addresses a critical gap in the early detection of OSA in this population.
- Further psychometric evaluation is warranted to establish the questionnaire's reliability and validity for widespread clinical use.
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.
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