Steroid-dependence is a life-long condition with a risk of premature mortality from undertreated adrenal crisis or omission of steroids. Previous studies identified rates of adrenal crisis around 8.3/100 patient years (Hahner 2015). We invited members of Addisons Disease Self-Help Group to complete an online questionnaire about any experiences of adrenal crisis. Respondents(N=628) were asked to provide demographic information and details of their most recent adrenal emergency. 74 people (12%) reported diagnosis <12 months previously. Concerningly, 34% of this cohort had already experienced 1 3 episodes of post-diagnosis adrenal crisis. Only 35% reported vomiting as a trigger factor; 35% also reported flu-like illness with fever as a cause. 26% reported anxiety, bereavement or severe emotional stress as a trigger; 22% reported dehydration, sunstroke or overexertion. The most common time of day for the newly-diagnosed to realise they needed emergency treatment was 18:00 24:00 (35%), followed by 06:00 12:00 (30%). 63% had an injection kit in their possession at the time of their most recent adrenal crisis (N=23), but only 19% were able to self-inject or receive IM hydrocortisone from a partner. 27% were treated by ambulance crew, 27% by A & E staff, 18% by a GP, nurse or other hospital doctor. 9% recovered by taking extra oral hydrocortisone. Over half of this cohort were taken to hospital by ambulance; over 40% were admitted for 1+ days. Only 22% said they had received 1-1 training in injection method from an endocrine nurse. A further 26% receiving 1-1 training from a GP, practice nurse or other hospital specialist. These findings emphasize that adrenal patients should be adequately trained in self-management for adrenal crisis prevention at the time of diagnosis, to preserve life. Adrenal patient education should not be postponed until later followup appointments in outpatient clinics.
19 Nov 2018 - 21 Nov 2018