Ongoing care and monitoring: People with primary and secondary adrenal insufficiency need lifelong glucocorticoids, and for primary adrenal insufficiency mineralocorticoid replacement as well. People with tertiary adrenal insufficiency may be able to stop glucocorticoid replacement, but a proportion will need to continue lifelong. There are consequences of both over and under treatment with glucocorticoids and mineralocorticoids.

Signs and symptoms of glucocorticoid under-replacement include weight loss, early satiety, decreased appetite, nausea, fatigue that is significantly affecting the person’s ability to carry out activities of daily living, worsening pigmentation (in primary adrenal insufficiency), muscle weakness. Additional signs and symptoms in children and young people include faltering growth and early puberty.

Signs and symptoms of glucocorticoid over-replacement (for people who are on a higher dose than standard replacement) include weight gain, increased appetite, disturbed sleep, skin thinning, new or worsening diabetes, new or worsening hypertension, cushingoid appearance, skin infections, acne, thrush, frequent or low-impact fractures, height loss, fragility fractures.

There is variation in practice, both in frequency of ongoing monitoring of people with adrenal insufficiency, and in what tests might be performed.

The purpose of this review is to determine the optimal frequency of monitoring and what needs to be monitored for consequences of over- or under-treatment with glucocorticoids to improve outcomes for people with adrenal insufficiency,

Ongoing care and monitoring for people receiving end-of-life care: Glucocorticoids are essential for life in people with adrenal insufficiency. For people coming towards the end of their life comfort and symptom control become priorities rather than prolonging life. It can be difficult to take oral medication, or multiple doses towards end-of-life and so it may be necessary to adjust replacement regimen of glucocorticoids to once daily dosing, use of dispersible medications rather than tablets, or use of subcutaneous or intramuscular preparations. It also is not appropriate to be performing invasive monitoring and blood tests at end-of-life. Patients’ wishes should be taken into account, and they may choose to stop all medication when they are actively dying.

The purpose of this review is to determine what ongoing care and monitoring should be offered to people who are receiving end-of-life care.