Endocrine Abstracts

Background: Understanding hypoadrenal patients’ perceptions of adrenal crisis is vital in the prevention of this endocrine emergency. This study explored the experiences, knowledge and attitudes of hypoadrenal patients to adrenal crises and their prevention.

Method: A cross-sectional qualitative study using structured interviews with patients with primary and secondary adrenal insufficiency. Data were analysed using thematic content analysis.

Results: Twenty-four participants were recruited; 15 with primary adrenal insufficiency, 9 with secondary adrenal insufficiency. Eighteen (75%) had experienced an adrenal crisis; a third (n=6) with a sudden onset. Half (n=9) relied on family or friends to respond. Fifty-eight per cent described negative feelings towards the risk of adrenal crisis (feeling scared, vulnerable, insecure, resentful, annoyed, superstitious, depressed or anxious). Twenty-nine per cent tried to ignore the risk of adrenal crisis, and half focused on negative aspects of risk. About a third described a lack of trust in others to act appropriately, including health care professionals, and were fearful that an adrenal crisis could be fatal. More than half had had a negative experience involving health care professionals in the context of an adrenal crisis, and almost a third recalled experiences where they felt ignored or not listened to. Seventeen (71%) owned a MedicAlert bracelet, but 6 did not like wearing one or did not want one, 4 described unappealing aesthetics of the bracelets, and 8 felt they were impractical to wear. Fifty-four per cent were members of a patient support group, but 42% felt that experiences shared in support groups could be unhelpful if negative, or frightening.

Conclusion: There are some potential barriers to adrenal crisis prevention, including negative perceptions of adrenal crisis, healthcare professionals, patient support groups and MedicAlert bracelets. Patients in adrenal crisis often relied on family, friends and their GP; this should be taken into consideration when educating and supporting hypoadrenal patients.