Abstract
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.