Experiences in feeding and gastrointestinal dysfunction in children with CHARGE syndrome

Feeding issues are very common in individuals with CHARGE syndrome and can lead to increased morbidity and mortality. The aim of this study was to expand upon the limited knowledge base of feeding and gastrointestinal issues in individuals with CHARGE syndrome. Parents of individuals (age range 1–18...

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Bibliographic Details
Published in:American journal of medical genetics. Part A 2017-11, Vol.173 (11), p.2947-2953
Main Authors: Macdonald, Meghan, Hudson, Alexandra, Bladon, Angela, Ratcliffe, Elyanne, Blake, Kim
Format: Article
Language:English
Subjects:
Adolescent
CHARGE syndrome
CHARGE Syndrome - complications
CHARGE Syndrome - epidemiology
CHARGE Syndrome - physiopathology
Child
Child, Preschool
Children
Constipation
Constipation - epidemiology
Constipation - physiopathology
Feeding
Feeding and Eating Disorders - complications
Feeding and Eating Disorders - epidemiology
Feeding and Eating Disorders - physiopathology
Female
gastrointestinal
Gastrointestinal diseases
Gastrointestinal Diseases - complications
Gastrointestinal Diseases - epidemiology
Gastrointestinal Diseases - physiopathology
Gastrointestinal tract
Humans
Infant
Male
Morbidity
Nutritional Status
Parents
reflux
Surveys and Questionnaires
tube feeding
Vomiting
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Summary:Feeding issues are very common in individuals with CHARGE syndrome and can lead to increased morbidity and mortality. The aim of this study was to expand upon the limited knowledge base of feeding and gastrointestinal issues in individuals with CHARGE syndrome. Parents of individuals (age range 1–18 years) with CHARGE syndrome, with or without feeding/gastrointestinal issues, were recruited through international CHARGE syndrome associations and CHARGE syndrome Facebook pages. Parents completed three questionnaires: CHARGE diagnostic characteristics; Pediatric Assessment Scale for Severe Feeding Problems © and PedsQL™ Gastrointestinal Symptoms Scale; and open‐ended questions. Sixty‐nine completed questionnaires were included in the study analysis (median age 7; 58% females). Individuals who were completely tube fed (n = 21) had significantly more feeding difficulties than individuals who were either partially (n = 26) or completely orally fed (n = 20; p 
ISSN:1552-4825
1552-4833
DOI:10.1002/ajmg.a.38458