Abstract
BackgroundChildren with Down syndrome suffer from recurrent respiratory tract and ear-nose-throat complaints that influence daily life. Little is known about the frequency of these complaints, as well as their relation to co-morbidity and ageing.Methods/designA prospective web-based parent-reported observational study was designed for parents having a child with Down syndrome (age 0 to 18 years). Upon registration, parents receive an email containing a link to a weekly questionnaire regarding respiratory symptoms during two consecutive years. Additionally, at the beginning, after one year and at the end of the study they receive an extended questionnaire concerning baseline data, daily activities and medical history. The data will be compared to the ongoing “child-is-ill” study, which collects weekly data in an identical fashion in children that are considered to be “normal as to being ill” by their parents.DiscussionThis study will provide important data on the epidemiology of respiratory symptoms in children with Down syndrome, which will be useful for further studies on treatment options. Also, this study will gain insight in healthcare usage and work absence due to the child’s illnesses.
Highlights
Children with Down syndrome suffer from recurrent respiratory tract and ear-nose-throat complaints that influence daily life
This study will provide important data on the epidemiology of respiratory symptoms in children with Down syndrome, which will be useful for further studies on treatment options
We recently showed that parent-reported recurrent respiratory tract infections in 8-year-old children with Down syndrome (DS) are associated with more impaired mental and motor development, lower health related quality of life and more behavioral problems compared to children whose parents report no increased respiratory tract infections in their child [14]
Summary
Children with Down syndrome suffer from recurrent respiratory tract and ear-nose-throat complaints that influence daily life. Little is known about the frequency of these complaints, as well as their relation to co-morbidity and ageing. Down syndrome (DS) is the most common genetic cause of developmental delay in humans, affecting approximately 1 in 700 liveborn infants in the Netherlands [1,2]. Respiratory complications and ear, nose and throat (ENT) diseases are a major contributor to morbidity and mortality in patients with DS. Up to 80% of all hospitalizations and admissions to a pediatric intensive care unit of children with DS is caused by lower respiratory tract infections [4,5]. The risk of respiratory syncytial virus infection and viral induced wheezing, but not asthma, is increased in infants
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