Abstract
CHARGE syndrome is a genetic disorder caused by mutation of the CHD7 gene. Children with CHARGE syndrome often experience vision and hearing impairments, delayed growth and development, heart abnormalities, and artesia/stenosis of the chonae. Although not part of the diagnostic criteria, many individuals with CHARGE syndrome experience feeding and gastrointestinal difficulties. Interventions most commonly recommended and utilized to address feeding difficulties for children with CHARGE syndrome include tube feedings (medical approach) and oral-motor therapy. Despite the effectiveness of a behavior analytic approach to address feeding difficulties for a variety of pediatric populations, this approach is not routinely considered as a viable treatment option to address feeding difficulties for children with CHARGE syndrome. Outcome data of four children with CHARGE syndrome who participated in an intensive behavioral-based feeding program were reviewed. Variables reviewed included percentage of admission goals achieved, treatment strategies utilized, and changes in growth status, feeding tube dependence, texture and variety of foods consumed, and occurrence of inappropriate mealtime behavior. Outcomes evaluated in this review support the effectiveness of a behavior analytic approach for addressing feeding difficulties for children with CHARGE syndrome.
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The datasets analyzed during the current study are not publicly available because they are related to human subject information and include medical variables. However, datasets will made available from the corresponding author upon reasonable request.
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Hallie M. Smith: conceptualization, methodology, data curation, formal analysis, investigation, resources, writing-original draft preparation, supervision, project administration. Hailey E. Ripple: formal analysis, investigation, writing-original draft. Alison M. Kozlowski: conceptualization, writing-review & editing, visualization. Kasee K. Stratton-Gadke: conceptualization, writing-review & editing. peter girolami: resources, writing-review & editing.
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• Behavioral strategies are effective at addressing feeding difficulties for CHARGE syndrome.
• Participants met 85% of feeding-related treatment goals.
• Increase in consumption and variety of foods observed for all participants after implementation of behavior analytic treatment strategies.
• Clinicians should advocate for use of behavioral interventions when addressing feeding concerns for individuals with CHARGE syndrome.
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Smith, H.M., Ripple, H., Kozlowski, A.M. et al. CHARGE Syndrome and Comorbid Feeding Difficulties: A Summary of Outcomes following Behavior Analytic Treatment. Behav Analysis Practice 15, 881–892 (2022). https://doi.org/10.1007/s40617-021-00674-5
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DOI: https://doi.org/10.1007/s40617-021-00674-5