Gastrointestinal stromal tumors (GIST) are very rare, especially within the pediatric population. The National Institutes of Health initiated a multidisciplinary clinic to bring together a worldwide group of healthcare providers with experience in the study and treatment of GIST in order to better understand the disease and to examine whether this is a population at psychosocial risk.Seven GIST clinics have been held to date. Participants completed a GIST Psychosocial Assessment containing items covering demographic factors, family stressors, general health, psychosocial concerns, psychiatric history, and self-identified needs. Our sample consists of 60 adult patients (ages 18-66) and 18 pediatric patients (ages 9-17).Living with pain at least a few days a week was endorsed by those whose self-reported health status was good to excellent (49% of the adult cohort and 25% of the pediatric cohort). Pain was significantly associated with anxiety, difficulties with family relationships, behavior problems, and psychotropic medication use. Body image and appearance concerns were endorsed by over half of the cohort. Post-trauma symptoms were prevalent for those newly diagnosed and those living with GIST for over 15 years.This is the first study to explore the psychosocial impact of GIST. Individuals living with GIST experience chronic pain, post-trauma symptoms and significant anxiety along with an expressed need for interventions to help them manage their anxiety. Due to the chronic nature of this disease, the GIST population is at risk for long-term psychological distress. Psychosocial interventions in pediatric and adult care settings are offered.
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机译：胃肠道间质瘤（GIST）非常罕见，尤其是在儿科人群中。美国国立卫生研究院（National Institutes of Health）成立了一个多学科诊所，将在GIST研究和治疗方面经验丰富的全球医疗服务提供者聚集在一起，以便更好地了解该疾病并检查该人群是否有社会心理风险。七个GIST诊所拥有至今为止。参与者完成了GIST心理社会评估，其中包括人口统计学因素，家庭压力源，总体健康，社会心理问题，精神病史和自我识别的需求。我们的样本包括60位成年患者（18-66岁）和18位儿科患者（9-17岁）。每周至少几天生活在痛苦中的患者得到了自我报告的健康状况良好至极好（49成人队列的百分比和小儿队列的25％）。疼痛与焦虑，家庭关系困难，行为问题和精神药物的使用显着相关。超过一半的人认可了身体形象和外观方面的关注。创伤后症状在新诊断的患者和患有GIST的患者中已普遍存在15年以上。这是首次探讨GIST的社会心理影响的研究。患有GIST的患者会遭受慢性疼痛，创伤后症状和严重焦虑，并明确表示需要采取干预措施来帮助他们管理焦虑。由于这种疾病的慢性性质，GIST人群面临长期心理困扰的风险。提供儿科和成人护理环境中的社会心理干预。
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