Endocrine Abstracts

Background: Self-management is essential for patients with adrenal insufficiency (AI) to achieve optimal outcomes of glucocorticoid (GC) replacement therapy by minimising adverse effects from over- or under-replacement and appropriately adjusting the dose in intercurrent illness to prevent adrenal crisis. Evidence suggests that many patients report deficits in self-management especially concerning ‘sick day rules’, prevention and management of adrenal crisis and have high concerns about adverse effects from their treatment.

Objectives: To develop and evaluate the acceptability of materials to support self-management for patients with AI aiming to identify individual needs and concerns about their condition and treatment and to improve patient-clinician communication.

Study design: The support materials were developed in collaboration with an expert faculty of endocrinologists, endocrine nurses and patients with AI from across Europe and comprise of i) a one-page patient questionnaire to help patients identify individual concerns about their AI and GC replacement therapy, ii) a patient information booklet designed to address the concerns identified in the questionnaire and iii) a short outline for healthcare professionals describing how patients can use the questionnaire in conjunction with the booklet as an aid for their endocrine clinic consultations. An on-line survey was conducted involving 100 patients recruited through patient support groups in the UK. We asked patients to read and comment on the content of the questionnaire and booklet and to respond to a number of questions designed to assess patients’ acceptability of these materials as an aid to identify individual concerns about their AI and GC replacement therapy.

Outcome: Support materials that are acceptable to patients with AI and healthcare professionals and can be used to support self-management of GC replacement therapy and improve patient-clinician communication.