Patients prioritize mental health more than clinicians: US survey

Feelings of loneliness, hopelessness reported by most Cushing's patients

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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Feelings of loneliness and hopelessness affect the majority of people with Cushing’s disease, according to a survey conducted by the Memorial Sloan Kettering (MSK) Cancer Center in New York.

Patients often felt they had no choices about their treatment, which contrasted with the perception of healthcare providers at MSK’s Multidisciplinary Pituitary and Skull Base Tumor Center, who prioritized medications and tumor control, while patients more commonly valued quality of life and mental health.

“Regular open communication between [healthcare providers] and [Cushing’s disease] patients will help bridge perception differences and facilitate personalized care, which will ultimately improve long-term outcomes,” researchers wrote.

Survey findings were detailed in a study, “Different patient versus provider perspectives on living with Cushing’s disease,” published in the journal Pituitary.

Cushing’s disease is caused by a tumor in the brain’s pituitary gland, which leads to abnormally high levels of the stress hormone cortisol in the body, which is also known as hypercortisolism. Surgical removal of the disease-causing tumor is the standard treatment for Cushing’s disease. High cortisol levels — and the shift to lower levels after surgery — can cause a variety of changes in other parts of the body, including the thyroid and adrenal glands.

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More than half of patients do not receive sufficient information after treatment

For patients, the diagnosis is associated with concerns about their treatment course and outcomes. Communication between physicians and patients is therefore key to successful care, but past evidence suggests more than half of Cushing’s patients do not receive sufficient information from their healthcare providers after undergoing treatment.

With this in mind, the MSK pituitary center launched an annual virtual program in 2019 that offers education for Cushing’s patients and healthcare professionals.

In the study, researchers compared the perspectives of patients and healthcare providers before they joined the virtual educational program.

They analyzed data from anonymous surveys conducted before two MSK programs, one held on December 2020 and another on April 2022, which involved a total 655 participants. The surveys focused on gathering perceptions about Cushing’s disease and quality of life for patients, including their sense of hope, treatment choice, and loneliness.

From the 655 participants that took part in the two educational events, 46 Cushing’s disease patients and 116 healthcare providers were included in the analysis. Both patients and healthcare providers had a median age of 51 years. More than half of the participants in each group were female.

Providers were in practice for a mean of 18.5 years, and most were endocrinologists (72%), followed by neurosurgeons (9%), and nurses (8%).

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91% of patients had undergone pituitary tumor removal surgery

Most patients (91%) had undergone surgery to remove their pituitary tumor, and 20% received radiation therapy. A third of the patients (31%) received pharmacological treatment. Metyrapone, a cortisol-lowering medication marketed under the brand name Metopirone, was the most commonly used medication (11%), followed by ketoconazole (9%).

Among patients requiring pituitary hormone replacement therapy, which is necessary when the gland fails to produce enough levels of one or more hormones, 34.8% had deficits in one hormone and 21.7% in several hormones. Thyroid hormone replacement (37%) and adrenal replacement therapies (30%) were the most common.

The survey conducted before the MSK program revealed distinct attitudes between patients and healthcare providers across several domains. For instance, while 21.7% of the patients reported having no choice over their treatment, 99.1% of healthcare providers stated patients had at least some degree of choice over their treatment.

Moreover, while 71.3% of healthcare providers reported having high hopes for their patients’ improvement, this feeling was shared by 45.7% of the patients.

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Patients tended to feel lonely more than what healthcare providers perceive

Anxiety about diagnosis was markedly lower among patients compared with healthcare providers (65.2% vs. 94.6%). However, about 60.9% of patients tended to feel more alone, a phenomenon less perceived by healthcare professionals (45.5%).

Both patients (97.8%) and healthcare providers (100%) agreed that learning about the journeys of others with Cushing’s disease was beneficial for patients to better understand their own disease.

When asked about their personal care goals, “quality of life, including mental health” was the most common concern among 70% of the patients, followed by “controlling comorbidities” (39%), and “medical therapies/ tumor control” (24%).

For healthcare providers, “medical therapies/ tumor control” (44%) was the more commonly prioritized care goal, followed by “controlling comorbidities” (31%), and “quality of life, including mental health” (22%).

“Our findings highlight the importance of understanding [Cushing’s disease] patients’ outlook and perspective in their condition, and that they may differ from their [healthcare providers],” the researchers wrote.