Steroid-dependence is a life-long condition with a risk of premature mortality from undertreated adrenal crisis, hospital omission of steroids, or running out of maintenance drugs at home. We invited members of the main UK support groups representing steroid-dependent patients to complete an online questionnaire about their experiences of adrenal crisis. Respondents (n=1042) were asked to provide demographic information that explored predisposing factors, including comorbidities and length of repeat prescription for their essential steroid drugs.
Paediatric and geriatric patients were more likely to be on the minimum length 28 day repeat, while adults of working age were more likely to receive an extended length repeat from 2 to 6 months. Comorbidities, which are recognised to increase vulnerability to adrenal crisis, were the norm for patients steroid-dependent from any cause. 23% of autoimmune Addisons patients and 7% of pituitary patients reported no additional conditions. 57% of CAH replies, mostly from parents of a paediatric patient, reported no additional conditions; 16% identified asthma.
Hypothyroidism was the most common comorbidity, reported by 4458% of patients with autoimmune Addisons or a pituitary condition. Growth hormone dependency was reported by 53% of pituitary patients. Diabetes insipidus, which predisposes to adrenal crisis due to instability of the fluid balance, was reported by 33% of pituitary patients. Asthma, another condition predisposing to adrenal crisis, was reported by 12% of pituitary, 13% of autoimmune Addisons and 27% of patients whose adrenals had been surgically removed. Osteoarthritis was reported by 15% of pituitary and 16% of autoimmune Addisons patients. Pituitary patients reported more mobility problems (14%) than those with Addisons (8%). 19% of those whose adrenal had been surgically removed reported both mobility and cardiac problems.
These findings emphasise the vulnerability of steroid-dependent patients to adrenal crisis and the importance of good patient education about self-management of their multiple drug dependencies.