title: Feeding difficulties in children with CHARGE syndrome: prevalence, risk factors, and prognosis.
abstract: Children with CHARGE syndrome frequently experience long-term and complex feeding difficulties. This study investigated the prevalence and nature of feeding difficulties in a population of 39 children with CHARGE syndrome and explored the relationship between the clinical characteristics of the syndrome and feeding development. Information was collected via a survey (two questionnaires) completed by the parents. One questionnaire, the Pediatric Assessment Scale for Severe Feeding Problems, provided an objective measure of the current severity of feeding difficulties. Results of the survey indicated a high prevalence of long-term feeding issues in this population. Approximately 90% of the children had received tube feeding at some point in time. In contrast to previous literature, choanal atresia and heart malformations were not found to be significantly related to a higher severity of feeding difficulty or associated with long-term tube feeding. Cranial nerve dysfunction was found to be the primary clinical feature of CHARGE syndrome impacting feeding development, reflected in a high prevalence of weak sucking/chewing, swallowing difficulty, gastroesophageal reflux, and aspiration. The presence of these conditions in infancy suggests the likelihood of long-term feeding difficulty and warrants the ongoing attention of feeding specialists.
authors.affiliation: School of Human Communication Disorders, Dalhousie University, 5599 Fenwick Street, Halifax, Nova Scotia, Canada B3H 1R2. cindy.dobbelsteyn@dal.ca
authors.forename: Cindy
authors.initials: C
authors.lastname: Dobbelsteyn
authors.forename: Sean D
authors.initials: SD
authors.lastname: Peacocke
authors.forename: Kim
authors.initials: K
authors.lastname: Blake
authors.forename: William
authors.initials: W
authors.lastname: Crist
authors.forename: Mohsin
authors.initials: M
authors.lastname: Rashid
mesh_terms: D002648:Child; D002675:Child, Preschool; D002754:Choanal Atresia / Q000150:complications* / Q000453:epidemiology; D003103:Coloboma / Q000150:complications* / Q000453:epidemiology; D003638:Deafness / Q000150:complications* / Q000453:epidemiology; D003680:Deglutition Disorders / Q000175:diagnosis / Q000453:epidemiology* / Q000209:etiology; D004423:Ear / Q000002:abnormalities*; D005183:Failure to Thrive / Q000150:complications* / Q000453:epidemiology; D005260:Female; D005835:Genitalia / Q000002:abnormalities*; D006330:Heart Defects, Congenital / Q000150:complications* / Q000453:epidemiology; D006801:Humans; D007223:Infant; D008297:Male; D015995:Prevalence; D011379:Prognosis; D012307:Risk Factors; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013577:Syndrome