Schultz Fallon, Westcott-Chavez Amity
International Association for Food Protein Enterocolitis (IAFFPE), Howell, New Jersey, USA.
Curr Opin Allergy Clin Immunol. 2014 Jun;14(3):263-7. doi: 10.1097/ACI.0000000000000059.
To describe the obstacles that parents face when caring for a child with food protein-induced enterocolitis syndrome (FPIES) and discuss initiatives of key importance to the FPIES community.
Findings from a previous survey indicate that 80% of pediatricians have little or no knowledge of FPIES, suggesting that awareness is severely lacking among frontline providers. A preliminary study also indicates that the condition can have a profound effect on quality of life for patients and families.
FPIES is a rare but growing condition that poses significant personal and familial challenges for parents before and after diagnosis. Increased efforts from the medical community are needed to raise awareness among medical providers, establish improved criteria and guidelines for diagnosis and management, increase understanding through research, and offer parent information and support at every stage.
描述父母在照顾患有食物蛋白诱导的小肠结肠炎综合征(FPIES)的儿童时所面临的障碍,并讨论对FPIES群体至关重要的举措。
先前一项调查的结果表明,80%的儿科医生对FPIES了解甚少或一无所知,这表明一线医疗服务提供者严重缺乏认识。一项初步研究还表明,这种疾病会对患者及其家庭的生活质量产生深远影响。
FPIES是一种罕见但病例不断增加的疾病,在诊断前后都会给父母带来重大的个人和家庭挑战。医疗界需要加大努力,提高医疗服务提供者的认识,建立更好的诊断和管理标准及指南,通过研究增进了解,并在各个阶段为家长提供信息和支持。