Understanding patients' perspectives about adrenal crises

  • Research type

    Research Study

  • Full title

    Understanding hypoadrenal patients' experience and knowledge of, and attitudes to, adrenal crises and their prevention.

  • IRAS ID

    173567

  • Contact name

    Anna Crown

  • Contact email

    anna.crown@bsuh.nhs.uk

  • Sponsor organisation

    Brighton and Sussex University Hospitals NHS Trust

  • Duration of Study in the UK

    0 years, 11 months, 30 days

  • Research summary

    Adrenal crisis in patients with adrenal or pituitary disease is a potentially life-threatening, but usually preventable, occurrence. Avoiding adrenal crisis involves patient education about self-management when they are ill. Cortisol, a hormone produced by the adrenal glands in response to instructions from the pituitary gland, is a very important part of the response to ‘stress’, including illness. Patients with adrenal or pituitary disease may need to take hydrocortisone tablets to replace what their body should make naturally. If they are ill, they need to double their dose of hydrocortisone till they feel better. If they are vomiting and unable to take their hydrocortisone, they need urgent medical assistance, and will need hydrocortisone by injection. Patients, their relatives or friends, can be shown how to give a hydrocortisone injection and provided with a vial of hydrocortisone for use in an emergency. Patients need to alert doctors planning operations or other procedures to the fact that they take hydrocortisone replacement therapy. Patients are also advised to purchase ‘MedicAlert’ bracelets or necklaces. To avoid adrenal crisis, patients must understand their condition and how to manage it. This is a high priority for patient support groups and health care professionals. The aim of this study is to explore patients’ experience of and attitude to adrenal crisis. This will involve semi-structured interviews with patients with pituitary and adrenal disease. The aim is to identify the level of knowledge patients have; what mechanisms (if any) they have put in place to ensure they are prepared for an event; and whether they have shared that information with third parties in case they require assistance. This should enable health care professionals and patient support groups to offer better support in the future, with the aim of avoiding adrenal crisis.

  • REC name

    Yorkshire & The Humber - Bradford Leeds Research Ethics Committee

  • REC reference

    15/YH/0418

  • Date of REC Opinion

    9 Sep 2015

  • REC opinion

    Further Information Favourable Opinion