Abstracts

Parental Perception of GI Symptoms in Children with Dravet Syndrome

Abstract number : 2.156
Submission category : 6. Cormorbidity (Somatic and Psychiatric) / 6A. Medical Conditions
Year : 2016
Submission ID : 193137
Source : www.aesnet.org
Presentation date : 12/4/2016 12:00:00 AM
Published date : Nov 21, 2016, 18:00 PM

Authors :
Kelly G. Knupp, University of Colorado, Anschutz Medical Campus, Aurora; Sharon Scarbro, University of Colorado; and Amanda Dempsey, University of Colorado

Rationale: Dravet syndrome is a genetic syndrome characterized by an SCN1a mutation in most children. Characteristic symptoms of this syndrome have been well described and include seizures, cognition and gait. However, many families report other related symptoms likely to affect quality of life, particularly around appetite and eating. These have not been systematically quantitated. To fill this knowledge gap we surveyed parents and family members about appetite and eating problems among their children affected with Dravet syndrome to better understand the full clinical expression of this health problem. Methods: An electronic survey was developed in REDcap and sent vial email to the participants on the Dravet Syndrome Foundation email list. Three additional invitations were sent to non-responders on a weekly basis. Questions focused on eating, sleep and other symptoms that might be related to Dravet syndrome. The questions were assessed using a 4 point Likert scale (ex: Strongly Agree to Strongly Disagree). Results were later dichotomized for analysis. Logistic regression was used to calculate odds ratios of various demographic factors potentially associated with the report of poor appetite. Multivariable models were constructed using backwards elimination to assess the relationship between eating habits and parental report of poor appetite. Results: There were 202 respondents, 96% were parents of a child with Dravet Syndrome (the remainder were grandparents or guardians); 90.5% were female. The mean age of the affected child was 8 (IQR 5, 14), 50% were male and 90.5% were reported to have a known SCN1A mutation. Of those who responded, between 28.6% and 68.2% reported problems with eating/appetite (see table). Several symptoms were associated with a poor appetite including eating a decreased variety of food, prolonged mealtimes, needing assistance with feeding, eating food fads and picky eating. Difficulty swallowing and difficulty chewing were reported by 29% and 41% of respondents but were not associated with reporting a poor appetite. In an adjusted model, only decreased variety of food (OR 5.2, 95% CI 2.4-11.7), prolonged meal times (OR 3.9, 95% CI 1.4-10.6) and needing assistance with feeding (OR 2.6, 95% CI 1.2-5.8) were associated with parental perception of decreased appetite. Conclusions: Children with Dravet syndrome may have several associated co-morbidities related to appetite and eating that have not yet been well described. Poor appetite was associated with several other feeding related concerns but was not associated with difficulty chewing and swallowing. Parental report of GI concerns were common and warrant further study. Funding: none
Cormorbidity