Adults with Cushing’s syndrome report high burden of illness, despite ongoing treatment
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Key takeaways:
- Cushing’s syndrome symptoms moderately impact quality of life for adults with the condition.
- Weight gain, muscle fatigue and menstrual changes decline in severity from diagnosis to follow-up.
Adults with endogenous Cushing’s syndrome reported that the condition moderately affects their quality of life and causes them to have symptoms about 16 days in a given month, according to findings published in Pituitary.
“Our study aimed to evaluate the ongoing burden of Cushing’s syndrome in order to identify areas of unmet need,” Eliza B. Geer, MD, medical director of the Multidisciplinary Pituitary and Skull Base Tumor Center and associate attending of endocrinology and neurosurgery at Memorial Sloan Kettering Cancer Center, told Healio. “We found that patients with treated Cushing’s continue to experience ongoing symptoms more than half of the days in a given month, miss about 25 workdays per year and need twice the average number of outpatient visits per year, indicating a significant impact on daily function and work productivity. Some of these symptoms, like fatigue and pain, have not been well studied in Cushing’s patients, and need more attention.”
Geer and colleagues administered a cross-sectional survey to 55 adults aged 21 years and older who had been diagnosed with Cushing’s syndrome at least 6 months before the survey and were receiving at least one pharmacologic therapy for their disease (85% women; mean age, 43.4 years). The survey was conducted online from June to August 2021. Five patient-reported outcome scales were included. The CushingQoL was used to analyze quality of life, a visual analog scale was included to assess pain, the Brief Fatigue Inventory was used to measure fatigue, the Sleep Disturbance v1.0 scale assessed perceptions of sleep and the PROMIS Short Form Anxiety v1.0-8a scale was used to measure fear, anxious misery, hyperarousal and somatic symptoms related to arousal. Participants self-reported the impact of Cushing’s syndrome on daily life and their physician’s level of awareness of Cushing’s syndrome.
Some symptoms decline in severity over time
Of the study group, 81% had pituitary or adrenal tumors, and 20% had ectopic adrenocorticotropic hormone-producing tumors; 80% of participants underwent surgery to treat their Cushing’s syndrome.
The frequency of reported symptoms did not change from Cushing’s syndrome diagnosis to the time of the survey. The most frequently reported symptoms were weight gain, muscle fatigue and weakness and anxiety.
Participants reported a decline in symptom severity for weight gain, muscle fatigue and weakness and menstrual changes from diagnosis to the survey. Though symptom severity declined, none of the three symptoms were entirely eliminated. Adults did not report declines in severity for other symptoms. Hirsutism and anxiety were reported by few participants, but were consistently scored high in severity among those who reported it. There were no changes in patient satisfaction with medications from their first appointment to the time of the survey.
“It was surprising that anxiety and pain did not improve with treatment,” Geer said. “A quarter of patients at baseline reported anxiety and this percentage was exactly the same after treatment. Same for pain — nearly a quarter of patients reported pain despite treatment. While the presence of anxiety has been well-documented in Cushing’s patients, pain has not, and needs further study.”
Nearly half of primary care providers unable to diagnose Cushing’s syndrome
All participants reported having at least one challenge with being diagnosed with Cushing’s syndrome. Of the respondents, 49% said their primary care provider was unable to diagnose their Cushing’s syndrome and 33% initially received the wrong diagnosis. Physicians referred 49% of participants to a specialist, and 39% of adults said their doctor lacked knowledge or understanding of their condition.
The study group had a moderate level of quality of life impairment as assessed through the CushingQoL scale. The mean pain score was 3.6 of a possible 10, indicating low levels of pain. Moderate to severe levels of fatigue were reported by 69% of participants. Self-reported sleep and anxiety scores were similar to what is observed in the general population.
Participants said sexual activity, self-confidence and life satisfaction were most impacted by a Cushing’s syndrome diagnosis. Adults experienced symptoms a mean 16 days in a typical month and saw their outpatient physician an average of six times per year. Those who were employed said they miss 2 days of work per month, or about 25 days per year, due to Cushing’s syndrome.
“Longitudinal assessment of clinically relevant patient-reported outcomes based on validated measures and coupled with biochemical and treatment data is needed in a large cohort of Cushing’s patients,” Geer said. “This will allow us to identify clinically meaningful changes in symptom burden within each patient, as well as predictors of outcomes — which patients improve on which symptoms, and which patients do not feel better despite biochemical normalization. We need to improve our ability to help our patients feel better, not just achieve normal cortisol levels.”
For more information:
Eliza B. Geer, MD, can be reached at geere@mskcc.org.
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