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

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. Caregivers ( 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. 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.

Déclaration de conflit d'intérêts

Stephanie Sisley’s work has been funded by the NIH, USDA, Rhythm Pharmaceuticals, and Eli Lilly and Company. Stephanie Sisley has received speaking and consulting fees from Rhythm Pharmaceuticals. Sarah H. Elsea has research funding from the NIH, PTC Therapeutics, Speragen, Inc, and PRISMS, Inc. PRISMS, Inc supports the SMS Patient Registry, which is housed at Baylor College of Medicine. All other authors declare no conflicts of interest.