Flaherty Mary Grace, Kaplan Samantha Jan, Jerath Maya R
1 University of North Carolina, Chapel Hill, NC, USA.
J Prim Care Community Health. 2017 Oct;8(4):345-348. doi: 10.1177/2150131917705714. Epub 2017 Apr 27.
Patients exhibiting life-threatening symptoms associated with the alpha-gal food allergy (delayed urticaria or anaphylaxis due to mammalian meat) are frequently undiagnosed, causing unnecessary emergency department (ED) and health care visits, and extensive pain and suffering. This study aimed to determine the path to diagnosis experienced by alpha-gal patients.
Semistructured interviews were conducted from March to June 2016 with a chronological systematic sample of approximately 10% of patients diagnosed with alpha-gal and treated by the University of North Carolina Allergy and Immunology Clinic (n = 28). Main outcome measures included average length of time between first symptoms' appearance and diagnosis, number and type of health care encounters en route to diagnosis, and typical symptom severity.
Six interviewees (21%) were diagnosed within a year of experiencing symptoms, of the remaining 22, mean time to diagnosis was 7.1 years. In over 100 medical encounters (including 28 ED visits and 2 urgent care) the correct diagnosis or effective diagnosing referral occurred less than 10% of the time. Seventy-one percent (20/28) described their first symptoms as severe. More patients found the allergist specializing in this condition on their own (n = 12; 43%) than those who were formally diagnosed or received referrals (n = 10; 36%) through the health care system.
The medical community is challenged to stay abreast of emerging and newly uncovered illnesses through traditional medical literature communication channels. Presently, patients more often discover a diagnosis of alpha-gal allergy by using information resources on their own than by presenting to the ED with anaphylaxis.
出现与α-半乳糖食物过敏相关的危及生命症状（因哺乳动物肉类导致的迟发性荨麻疹或过敏反应）的患者常常未被诊断出来，从而导致不必要的急诊科就诊和医疗保健问诊，以及巨大的痛苦。本研究旨在确定α-半乳糖患者的诊断途径。
2016年3月至6月，对北卡罗来纳大学过敏与免疫诊所诊断并治疗的约10%的α-半乳糖患者（n = 28）进行了按时间顺序的系统抽样半结构式访谈。主要结局指标包括首次症状出现到诊断的平均时间、诊断过程中医疗保健问诊的次数和类型，以及典型症状的严重程度。
6名受访者（21%）在出现症状后的一年内被诊断出来，其余22名患者的平均诊断时间为7.1年。在超过100次医疗问诊（包括28次急诊科就诊和2次紧急护理）中，正确诊断或有效的诊断转诊发生的次数不到10%。71%（20/28）的患者将他们的首次症状描述为严重。自行找到专门治疗这种疾病的过敏症专科医生的患者（n = 12；43%）比通过医疗保健系统得到正式诊断或转诊的患者（n = 10；36%）更多。
医学界面临着通过传统医学文献传播渠道跟上新出现和新发现疾病的挑战。目前，患者更多是通过自行利用信息资源发现α-半乳糖过敏的诊断，而不是因过敏反应前往急诊科就诊。
