Earlier Diagnosis of Cushing’s Syndrome Boosts Patients Long-term Quality of Life, Study Reports

Cushing’s syndrome patients diagnosed earlier in the disease’s course are more likely to have better mental health and health-related quality of life in the long term, a study reports.

The study, “Surviving ectopic Cushing’s syndrome: Quality of life, cardiovascular and metabolic outcomes in comparison to Cushing’s disease during long-term follow-up,” was published in the journal European Journal of Endocrinology.

Cushing’s syndrome, like Cushing’s disease, is a disabling condition caused by excess cortisol production. In 80 percent of cases, it arises due to tumors producing excessive amounts of adrenocorticotropic hormone (ACTH) – which causes the adrenal glands to synthesize cortisol.

While most of these tumors are in the pituitary gland, causing what is known as Cushing’s disease, 20 percent are located elsewhere, leading to ectopic Cushing’s syndrome (ECS). ECS is associated with a large variety of benign and malignant tumors.

To date, the long-term outcomes of patients with ECS have only been reported as part of retrospective studies.

Researchers set out to analyze the long-term outcomes of ECS patients compared to patients with Cushing’s disease (CD) in two German tertiary-care centers. Specifically, they examined differences in cardiovascular, metabolic, musculoskeletal and psychiatric conditions between these patient groups.

In the study, 21 ECS patients and 59 CD patients in long-term remission were followed for 18 months or longer after successful surgery.

Overall, patients with ECS were diagnosed 8.5 months after their symptoms first appeared, while CD patients took a median of 25 months to be given a final diagnosis.

Also, 19 percent of ECS patients had self-reported psychiatric symptoms compared to 43 percent of CD patients at follow-up, indicating worse long-term mental health in CD patients compared to ECS patients.

Women with ECS had better scores on the mental-health related quality of life (QoL) questionnaire and on Cushing-specific life quality questionnaire, compared to women with CD. Among men, no  significant differences in QoL were seen between ECS and CD patients.

When looking at other factors, such as long-term outcomes on high blood pressure, metabolic parameters, bone mineral density and grip strength, the outcomes were similar in ECS and CD patients.

Statistical analysis using data from both ECS and CD patients shows that QoL was significantly correlated with time from first symptoms until diagnosis of Cushing’s syndrome. In other words, the quicker the diagnosis, the better the quality of life in the long-term.

“Our data are in line with the concept that patients with CD have a longer time between first symptoms and diagnosis than ECS patients resulting in a longer exposure to excessive cortisol levels. This appears to affect mental health and health-related quality of life, but not cardiovascular, metabolic and bone health,” the investigators wrote.

Researchers emphasize that it is vital to diagnose and treat Cushing’s syndrome as early as possible.