Quality of life improvements vary widely after Cushing’s disease surgery
Many patients continuing to struggle physically and emotionally
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Improvements in quality of life after successful surgery for Cushing’s disease vary widely, with many patients continuing to struggle physically and emotionally in the months following treatment despite normalization of cortisol levels, a new study has found.
“Our results highlight the need to educate and support patients before and after surgery for [Cushing’s disease],” researchers wrote. “Long-term follow-up studies are needed to better understand the trajectory of [quality of life] recovery and to identify predictors of treatment response.”
The study, “Quality-of-Life Recovery in Cushing’s Disease: A Cluster Analysis,” was published in the Canadian Journal of Neurological Sciences.
Recovery from prolonged cortisol exposure can take years
Cushing’s disease is caused by a tumor in the brain’s pituitary gland that leads to excessive production of the hormone cortisol. Prolonged exposure to high cortisol levels can lead to a variety of symptoms that can significantly impair physical, emotional, and social well-being.
Transsphenoidal adenomectomy, a minimally invasive surgery to remove the tumor through the nose, is the standard treatment for Cushing’s and is often successful in normalizing cortisol levels. However, recovery can still be difficult.
Following surgery, many patients may experience a temporary state of abnormally low cortisol levels that develops as the body readjusts after prolonged exposure to excess cortisol. This recovery process can take months or even years and may cause symptoms such as fatigue, muscle weakness, and excessive sleepiness.
Previous studies have shown that quality of life often does not fully recover after surgery, even when cortisol levels normalize. Some patients continue to experience physical, emotional, and social difficulties after treatment, underscoring that hormonal remission does not always translate into full recovery.
Study mainly captured the early stages of recovery
To better understand how quality of life changes after surgery, researchers in Canada analyzed data collected from 117 people treated for Cushing’s at their hospital between 2008 and 2024.
Participants completed two quality-of-life questionnaires during clinic visits. One was a Cushing’s-specific quality-of-life questionnaire, called QOL-CD, that assesses six aspects of well-being: general health, emotional health, physical health, mental status, social well-being, and satisfaction with medical treatment. Higher scores indicate a better quality of life. The RAND-36 questionnaire served as a broader measure of overall well-being, generating separate physical and mental health scores.
Among the participants, 86 completed questionnaires while they still had active disease, and 65 did so after surgery had normalized cortisol levels. A smaller group of 34 patients completed the same questionnaires both before and after treatment, allowing researchers to directly compare how each person’s quality of life changed following surgery.
Questionnaires were completed relatively close to surgery. In the overall group, surveys were completed a median of four months before surgery and 2.6 months afterward. In the subgroup of patients with both pre- and post-treatment data, surveys were completed a median of 3.5 months before surgery and 2.3 months after, meaning the study mainly captured the early stages of recovery rather than long-term outcomes.
Looking at the group as a whole, surgery provided clear health benefits. High blood pressure became less common after treatment, as did the use of blood pressure medications. Physical health scores were also significantly higher after surgery than during active disease.
When researchers focused on the 34 patients with before-and-after data, they found that while physical health improved significantly overall after surgery, broader recovery varied substantially from person to person.
This study descriptively outlines the varied patterns of post-treatment [quality-of-life] recovery in [Cushing’s disease] and suggests limitations of assessing treatment success based solely on biochemical remission. Our results can be used to better educate patients on the spectrum of wellness after surgery, particularly in respect to mental, emotional and physical health.
Using cluster analysis, a statistical method that identifies groups sharing similar patterns of change or characteristics, the researchers identified five patterns of quality-of-life change that fell into three broader recovery groups.
Five patients fell into a group marked by worsening quality of life across all domains after surgery. The largest group, comprising 20 patients, experienced declines across most quality-of-life domains. By contrast, nine patients showed broad improvements across all quality-of-life domains.
Overall quality-of-life scores differed significantly among these recovery groups during the early postoperative period, suggesting that patients may follow distinct recovery paths after surgery. Researchers also found that changes in emotional health were closely linked to changes in mental status and social well-being, suggesting that psychological and social recovery may be closely connected after surgery.
Such a finding supports the “routine use of the disease-specific QOL-CD” to identify patients at risk of poorer recovery and guide more “individualized, psychosocially informed follow-up.”
“This study descriptively outlines the varied patterns of post-treatment [quality-of-life] recovery in [Cushing’s disease] and suggests limitations of assessing treatment success based solely on biochemical remission,” the researchers concluded. “Our results can be used to better educate patients on the spectrum of wellness after surgery, particularly in respect to mental, emotional and physical health.”
