The health care use and cost of care before and after the diagnosis of six selected endocrine diseases in UK patients

Study type
Protocol
Date of Approval
Study reference ID
17_199
Lay Summary

The endocrine system is a series of glands that release chemicals (hormones) into the blood, used for a range of bodily functions, e.g. breathing, cell function and growth. Problems with hormones can lead to disorders, called endocrine diseases, whose signs and symptoms often overlap with other conditions making diagnosis difficult. There is little agreement on the best way to diagnose these diseases; patients often undergo a series of, sometimes contradictory, laboratory and imaging tests, and visits to general practitioners (GPs) and hospital doctors before an accurate diagnosis is made and treatment begins. The objective of this study is to compare the use of healthcare by patients with endocrine diseases (such as Cushing's syndrome, a disorder caused by very high levels of a hormone called cortisol) to other patients without these diseases. This will give information regarding the use of GP consultations, diagnostic tests, medications and hospital referrals, and help to estimate the current cost of the diagnosis and treatment of endocrine diseases in the National Health Service (NHS).

Technical Summary

The endocrine system is a series of glands that secrete hormones into the bloodstream, used to send signals and control bodily functions. Abnormal release of hormones can cause endocrine disorders, which are usually difficult to diagnose. Current clinical practice uses a range of diagnostic tests, though accurate diagnosis may require several visits to primary/secondary/tertiary care physicians. Little is known about the healthcare resources used and the costs of diagnosing and treating these disorders, especially in the UK. This observational study aims to describe and compare the healthcare use and costs of patients with acromegaly, Addison's disease, congenital adrenal hyperplasia, Cushing's syndrome, growth hormone deficiency and/or primary hyperaldosteronism to that of age, gender and GP practice matched general population control groups. Where available, NHS reference costs will be used to micro-cost primary and secondary care use. Simple summary and descriptive statistics (e.g. median (IQR), mean (CI)) will be used to describe healthcare use and costs among each group of patients. Where sample size permits, appropriate statistical methods (e.g. t-tests, GLM regression) will be used to compare healthcare use and costs between each endocrine disorder and the respective control group to estimate the additional costs of diagnosis and treatment for the NHS.

Health Outcomes to be Measured

Health care resource utilisation (primary); Use of diagnostic tests for diagnosis and monitoring (secondary); Cost of health care (primary); Use of medications and other therapies (secondary).

Collaborators

William Hollingworth - Chief Investigator - University of Bristol
Alexandros Chrysos - Corresponding Applicant - University of Bristol
Alastair Hay - Collaborator - University of Bristol
Stafford Lightman - Collaborator - University of Bristol
Thomas Upton - Collaborator - University of Bristol

Linkages

HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation