Eating Disorder Screening in Adults With Williams Syndrome: A Preliminary Report

Area of Science:

• Genetics and Rare Diseases
• Psychiatry and Behavioral Sciences
• Clinical Nutrition

Background:

• Eating disorders (EDs) are understudied in rare genetic conditions like Williams syndrome (WS).
• Previous research has not examined ED symptom prevalence in adults with WS.
• Understanding EDs in WS is crucial for targeted interventions.

Purpose of the Study:

• To determine the prevalence of ED symptoms in adults with Williams syndrome.
• To identify clinical and demographic factors associated with ED symptoms in WS.
• To hypothesize the types of ED presentations in WS, focusing on ARFID and binge-eating disorders.

Main Methods:

• Utilized modified Eating Disorder Assessment for DSM-5 and Pica, ARFID, and Rumination Disorder Questionnaire.
• Conducted semi-structured interviews with trained research staff for data collection.
• Employed descriptive and between-group analyses to compare ED-positive and ED-negative participants.

Main Results:

• Over a quarter of adults with WS (28%) screened positive for an ED.
• The most common ED presentations were binge-type EDs (63%) and ARFID-type EDs (29%).
• A significant majority (96%) of those screening positive had no prior ED diagnosis.

Conclusions:

• Adults with Williams syndrome exhibit a high frequency of ED symptoms, predominantly binge-type and ARFID.
• EDs in the WS population often remain undetected, posing challenges for identification and care.
• Validated screening tools are needed to improve ED detection and facilitate access to care for adults with WS.