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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Sofia
Llahana
sofia.llahana@city.ac.uk
Sofia
Llahana
sofia.llahana@city.ac.uk
More information about this study, what is involved and how to take part can be found on the study website.
Disorders of other endocrine glands
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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.
Aims
To measure factors that influence how patients with AI manage their condition and treatment and to develop an online programme (website) that can support patients to manage their condition and treatment for adrenal insufficiency.
Design and methods
The research study,guided by behaviour change theories,will be conducted in 2 phases:
Phase 1 includes an on-line questionnaire survey with patients with AI to measure barriers and enablers to self-management and current patient education and care service provision. Participants will be recruited from patient advocacy groups and Endocrine Clinics in the UK (Stage 1) and Europe,North America and Australia (Stage 2). Phase 2 will include focus group discussions and think-aloud interviews with patients with adrenal insufficiency to support the development of the website.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cross-sectional;
You can take part if:
You may not be able to take part if:
Exclusion criteria: • Patients with adrenal suppression with transient tertiary AI • Patients not on cortisol replacement therapy • Family members or non-patient participants,although they can support patients with completing the survey if needed.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Sofia
Llahana
sofia.llahana@city.ac.uk
Sofia
Llahana
sofia.llahana@city.ac.uk
More information about this study, what is involved and how to take part can be found on the study website.
The study is sponsored by City, University of London and funded by NIHR Academy .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 55041
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