BACKGROUND Adrenal patients have a lifelong dependency on steroid replacement therapy and are vulnerable to sudden death from undertreated adrenal crisis. Urgent treatment with parenteral steroids is needed, often with IV saline for volume repletion. Episodes of adrenal crisis are, for most patients, relatively infrequent and they may not be well prepared to respond. This study explores how patients recall previous episodes of adrenal crisis and their satisfaction with UK emergency medical treatment. METHODS We invited members of the main UK support groups representing steroid-dependent adrenal patients to complete an online questionnaire identifying the number, causes and location of previous adrenal crises (episodes needing injected steroids and/or IV fluids). Respondents were asked to rate the adequacy of their medical treatment in 2 successive questionnaires, conducted 2013 and 2017-18. RESULTS Vomiting was the major factor identified as a cause of adrenal crisis, indicated by 80% of respondents. The most common location, at 70%, was the home. Of the 30% away from home, 1 in 3 were overseas or travelling long-distance. Self-treatment played an increasing role in emergency response: in the 5 year interval between questionnaires an increasing number of patients self-injected. By the time of the 2017-18 survey self-injection was the most common method of initial treatment, with less than two-thirds travelling to hospital for follow-up medical treatment. This finding help to explain the higher rate of adrenal crisis identified in patient surveys than in hospital records. Satisfaction with medical care received stayed constant between the 2 surveys despite growing resourcing pressures across the NHS. Two-thirds were happy with the quality of the medical treatment they received for their most recent adrenal emergency; timeliness was the main factor influencing satisfaction. CONCLUSIONS Around one-third of adrenal patients report sub-optimal treatment at emergency medical departments. Medical staff have a low probability of encountering adrenal crisis and may be unfamiliar with either the urgency of adrenal crisis or the specific treatment response it requires. Comprehensive protocols for emergency medical staff with detailed patient education and training are needed in how to respond to this infrequently encountered - but acutely life-threatening - scenario.

中文翻译：

---

激素依赖型患者肾上腺危机的回顾性分析：原因，发生频率和结局。

背景技术肾上腺患者终生依赖类固醇替代疗法，并且容易遭受由于未充分治疗的肾上腺危机而导致的猝死。需要紧急使用肠胃外类固醇治疗，通常需要静脉注射生理盐水以补充容量。对于大多数患者来说，肾上腺危机的发作相对较少，并且可能没有做好应对的准备。这项研究探讨了患者如何回忆先前发生的肾上腺危机以及他们对英国紧急医疗的满意度。方法我们邀请代表类固醇依赖型肾上腺患者的英国主要支持小组的成员填写在线问卷，以识别先前的肾上腺危机（需要注射类固醇和/或静脉输液的病例）的数量，原因和位置。要求受访者在2013年和2017-18年进行的2份连续问卷中对他们的药物治疗是否足够进行评分。结果呕吐是确定为肾上腺危机的主要原因，有80％的受访者表示。最常见的位置是房屋，占70％。在离家30％的人中，三分之一的人在国外或长途旅行。自我治疗在紧急响应中的作用越来越大：在两次问卷调查之间的5年间隔中，越来越多的自我注射患者。截至2017-18年调查时，自我注射已成为最常见的初始治疗方法，不到三分之二前往医院接受后续治疗。这一发现有助于解释在患者调查中发现的肾上腺危机发生率高于医院记录。尽管NHS的资源压力不断增加，但在两次调查之间，对医疗服务的满意度保持不变。三分之二的人对他们最近一次肾上腺紧急情况所获得的医疗质量感到满意；及时性是影响满意度的主要因素。结论大约三分之一的肾上腺患者在急诊科报告了次优治疗。医务人员发生肾上腺危机的可能性很小，并且可能不熟悉肾上腺危机的紧迫性或所需的特定治疗反应。需要如何为急诊医务人员提供全面的方案，并接受详细的患者教育和培训，以应对这种罕见的情况，但这种情况会严重威胁生命。