Fatigue, work limits may persist years after Cushing’s syndrome treatment
German study finds disability burden remained high during long-term remission
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People with Cushing’s syndrome may experience lasting fatigue, reduced work ability, and disability years after treatment, including during remission, a new study shows.
Researchers found that people with both active Cushing’s and disease in remission reported poor work ability. Among those in remission, fatigue and disability were also common, showing that substantial limitations can persist for years after treatment.
These findings add to growing evidence that Cushing’s syndrome can affect patients’ ability to work and participate in daily life even after treatment, the researchers noted. The team encouraged individualized rehabilitation plans “to ensure successful reintegration into professional and social life.”
The study, “Low work ability and high disability burden in Cushing’s syndrome: a multicenter cohort study,” was published in the Journal of Endocrinological Investigation.
Cushing’s can have lasting effects beyond excess cortisol
Cushing’s syndrome refers to a group of conditions driven by excessive levels of cortisol, or hypercortisolism. Cushing’s disease, the most common form of endogenous Cushing’s syndrome, is caused by a tumor in the brain’s pituitary gland that produces too much adrenocorticotropic hormone (ACTH). ACTH then signals the adrenal glands, which sit atop the kidneys, to produce too much cortisol.
High cortisol levels can affect multiple systems in the body, contributing to cardiovascular, metabolic, and psychological complications. Many people continue to experience long-term health problems even after successful treatment, which can affect their ability to work and participate in daily activities.
In this study, researchers in Germany evaluated work ability and disability in three groups: people with newly diagnosed active Cushing’s, people evaluated for the condition but found not to have it, and people whose Cushing’s was in remission. Researchers analyzed clinical data from medical records, and participants completed validated questionnaires on socioeconomic status, work ability, and fatigue.
The study enrolled 28 people with newly diagnosed Cushing’s, 56 who were evaluated but found not to have Cushing’s and served as a comparison group, and 89 people in remission after treatment.
Remission was defined as either adequate suppression of cortisol levels after a dexamethasone suppression test following treatment, or prolonged adrenal insufficiency requiring hormone replacement therapy.
Among the 28 participants with newly diagnosed active Cushing’s, Cushing’s disease was the most common cause, followed by Cushing’s caused by adrenal tumors. Ectopic Cushing’s, caused by tumors outside the pituitary and adrenal glands, was less common.
Participants with active Cushing’s were similar in age, sex, and most Cushing’s-related health conditions to those in the comparison group, but were more likely to have type 2 diabetes (29% vs. 5%). Both groups had similar levels of education and employment, but those with Cushing’s tended to work fewer hours per week (30 vs. 39).
Active Cushing’s tied to lower work ability
Those with active Cushing’s reported significantly lower work ability, with 70% of working participants rating it as “poor,” compared with 41% of those without the condition. Sick leave was common in both groups and lasted for a similar amount of time. Among participants with disability status under Germany’s system, 71% of those with Cushing’s and 54% of those without it were classified as having a severe disability.
In the remission group, participants had been in remission for a median of 7.2 years. Among them, 39 had recovered normal adrenal function, while 50 had persistent adrenal insufficiency. Surgical removal of both adrenal glands was more common among those with persistent adrenal insufficiency (36% vs. 3%).
Despite being in remission for several years, many participants continued to experience significant work-related limitations. About 69% were employed, while 47% had an officially recognized disability and 63% reported increased or severe fatigue. In addition, 15% received pensions for reduced earning capacity.
The researchers said these findings revealed “a clear mismatch” between Germany’s disability assessment system, which generally considers surgically treated patients with Cushing’s to be “cured,” and patients’ actual functional impairment. This indicated a “need to revise assessment criteria to better reflect the lasting occupational and health-related limitations.”
The study also explored factors associated with poorer work ability. Across employed participants in the study groups, greater fatigue was strongly associated with poorer work ability. In the prospective study group, greater cortisol excess was weakly to moderately associated with poorer work ability, while only cortisol measured after the dexamethasone suppression test showed a weak association with more severe fatigue.
In an exploratory analysis that accounted for diagnostic group, age, sex and certain coexisting conditions, active Cushing’s, older age and depression were significantly associated with lower work ability. Older age and depression were also associated with more severe fatigue.
“This study adds to the increasing recognition of impaired occupational-health related aspects in patients with [Cushing’s syndrome],” the researchers wrote. The team emphasized that future studies “will be essential to determine factors influencing long-term socioeconomic outcomes” and encouraged doctors to support individualized rehabilitation plans to help patients return to professional and social life.
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