Blind to the perils of pursuing food: Behaviors of individuals with Smith-Magenis Syndrome

Authors

Citrine Elatrash
Jenna Shi
Theresa Wilson
Sarah H Elsea
Stephanie Sisley

Publication Date

1-1-2024

Journal

Genetics in Medicine Open

DOI

10.1016/j.gimo.2024.101857

PMID

39119119

PMCID

PMC11309085

PubMedCentral® Posted Date

6-12-2024

PubMedCentral® Full Text Version

Post-print

Published Open-Access

yes

Keywords

Food behaviors, Genetic obesity, Parent control, Personalized strategies, Smith-Magenis syndrome

Abstract

PURPOSE: Discrepancies exist between the need to lock food away and satiety scores in the Smith-Magenis syndrome (SMS) population. This study sought to uncover food-related behaviors within this unique group of individuals.

METHODS: Caregivers (

RESULTS: This study identified a global theme of "Blind to the perils while pursuing their goals," supported by 5 organizing themes: (1) Biology-impacting behaviors, (2) Need for personalized strategies, (3) Controlling food experiences, (4) Need for parents to orchestrate life, and (5) Surprising resourcefulness. Subthemes within these organizing themes highlighted that individuals with SMS have unique food-related behaviors and often fixate on certain types of foods. Their constant obsession with food for many of them is driven by hunger, obsessive characteristics, a need for autonomy, and a need for fairness. Caregivers must put multiple guardrails in place and remain constantly vigilant to prevent overeating in these individuals.

CONCLUSION: Individuals with SMS often perseverate on food and display unique food-related behaviors. Treating obesity in this population is likely to be ineffective without multicomponent, individualized strategies. Additionally, research in this population will likely require targeted instruments for the SMS population to more clearly define the underlying etiologies and to track changes over time in therapeutic trials.

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