Elatrash Citrine, Shi Jenna, Wilson Theresa, Elsea Sarah H, Sisley Stephanie
USDA/ARS Children's Nutrition Research Center, Department of Pediatrics, Baylor College of Medicine, Houston, TX.
Rice University, Houston, TX.
Genet Med Open. 2024;2. doi: 10.1016/j.gimo.2024.101857. Epub 2024 Jun 12.
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 ( = 24) representing 21 individuals with SMS, recruited from the Parents and Researchers Interested in SMS national meeting and social media platforms, participated in semistructured interviews. Interviews were digitally recorded, transcribed verbatim, coded, and analyzed using hybrid thematic analysis.
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.
在史密斯-马吉尼斯综合征（SMS）人群中，食物储存需求与饱腹感评分之间存在差异。本研究旨在揭示这一独特个体群体中与食物相关的行为。
从对SMS感兴趣的家长和研究人员全国会议以及社交媒体平台招募了代表21名SMS患者的24名照料者，参与半结构化访谈。访谈进行数字录音、逐字转录、编码，并使用混合主题分析法进行分析。
本研究确定了一个总体主题“追求目标时对危险视而不见”，并得到5个组织主题的支持：（1）影响生物学的行为，（2）需要个性化策略，（3）控制食物体验，（4）家长需要精心安排生活，（5）出人意料的足智多谋。这些组织主题中的子主题突出表明，SMS患者具有独特的与食物相关的行为，并且常常执着于某些类型的食物。对他们中的许多人来说，对食物的持续痴迷是由饥饿、强迫特征、自主需求和公平需求驱动的。照料者必须设置多个防护栏并始终保持警惕，以防止这些个体暴饮暴食。
SMS患者常常执着于食物并表现出独特的与食物相关的行为。如果没有多成分、个性化的策略，在这一人群中治疗肥胖可能无效。此外，对这一人群的研究可能需要针对SMS人群的有针对性的工具，以更清楚地界定潜在病因，并在治疗试验中跟踪随时间的变化。
