Self-management in patients with adrenal insufficiency_ V 1.0
Research type
Research Study
Full title
A cross-sectional study to evaluate barriers and enablers to self-management for patients with adrenal insufficiency
IRAS ID
290622
Contact name
Sofia Llahana
Contact email
Sponsor organisation
City, University of London
Duration of Study in the UK
1 years, 3 months, 30 days
Research summary
Background
The human body produces a hormone called cortisol which is essential for survival. Cortisol is produced by the adrenal glands which are controlled by a master gland called the pituitary. Any damage to the adrenals or the pituitary glands results in lack of cortisol production called Adrenal Insufficiency (AI). Patients with AI need lifelong treatment with steroids, most commonly hydrocortisone tablets which they need to take 2 or 3 times a day and need to double or triple the dose during illness. These patients can be at risk of adrenal crisis which is a life-threatening complication triggered mainly by infections, injuries or extreme levels of stress, and must have an injection of hydrocortisone immediately to prevent hospitalisation and death. Many studies found that patients face a number of barriers to self-managing their condition and treatment and their ability to prevent and treat adrenal crisis. Education is vital in supporting patients’ self-management but there are no agreed standard for patient education and care services that support self-management.
Aim
To describe current patient education and care services and to measure barriers and enablers to self-management for patients with AI.
Methods
A survey will be conducted in two stages to collect data from patients with adrenal insufficiency in the UK (Stage 1) and Europe, Australia and USA (Stage 2). An on-line questionnaire will be used to measure barriers and enablers to self-management, to describe current patient education and other support services, and to explore whether these were affected or adapted in response to the Covid-19 pandemic. Patients will be recruited via patient advocacy groups and endocrine clinics.
Study outcomes
Findings will guide the development of internationally agreed standards for patient education and care services for patients, their families and healthcare professionals, and will inform future research in supporting patients to self-manage their condition.REC name
North West - Haydock Research Ethics Committee
REC reference
21/NW/0087
Date of REC Opinion
16 Mar 2021
REC opinion
Favourable Opinion