Care for patients with Cushing’s syndrome could be improved through more frequent multidisciplinary collaboration with specialists outside of endocrinology.

Cushing’s syndrome (CS), an endocrine condition caused by sustained exposure to high levels of circulating cortisol, can lead to incapacitating morbidities, psychological and physical changes, and reduced QOL in patients, explained Elena Valassi, MD, PhD, and colleagues. For patients with CS, the ultimate treatment would consist of early diagnosis and curative surgery, Dr. Valassi said, adding that psychological aspects would also be addressed through multidisciplinary care of comorbidities.

However, she added, the symptoms of CS often mimic common conditions such as depression and metabolic syndrome, resulting in a longer time to diagnosis, which can affect QOL in a considerable number of patients.

Both Patients & Physicians Were Administered Questionnaires

With little information available on patients’ perception of CS, from diagnosis through treatment and follow-up, Dr. Valassi and colleagues sought to examine the perspectives of patients with CS to ascertain unmet therapeutic needs, publishing their findings in Endocrine Connections.

They administered a 12-item questionnaire via the World Association for Pituitary Organisations to 320 patients with CS from 30 countries. To assess physician perceptions on patients with CS, the study team issued a similar 13-item questionnaire to 40 clinicians.

75% Reported Obesity/Weight Gain as ‘Most Burdensome’ CS Symptom

Most (75%) patients reported obesity/weight gain as the most burdensome symptom of CS. More than 40% of respondents reported sleep disturbances, feelings of depression, muscle weakness, fatigue, and excessive hair growth on unexpected areas as being burdensome.

Nearly half of all patients (49%) indicated a time to diagnosis from first reporting of symptoms of more than 2 years. Furthermore, the study team found that 88.4% of patients experienced ongoing symptoms post-treatment, including obesity/weight gain (41.9%), muscle weakness (48.8%), and fatigue (66.3%). For delay in diagnosis, comparisons were considerable for decreased libido (P=0.03) and weight gain (P=0.008).

An endocrinologist made the initial diagnoses of CS in more than half (53.8%) of patients or prescribed screening; general practitioners made 18.1% of diagnoses. A variety of other physicians contributed to the diagnosis of CS in the remaining cases.

For the parallel physicians’ questionnaire, the researchers found that physicians poorly estimated the incidence of comorbidities, specifically cognitive impairment. As for persistent comorbidities, only a small number of patents were helped by specialists besides endocrinologists. Overall, nearly two-thirds of patients expressed satisfaction with treatment.

Combination of Factors Is Responsible for Poor Management of CS

Dr. Valassi and colleagues concluded that a combination of factors contributes to poor multidisciplinary management of enduring comorbidities in patients with CS as well as dissimilar perceptions between physicians and patients.

One of these factors, they noted, is the lack of awareness of clinical manifestations of CS among specialists other than endocrinologists, including general practitioners. The low percentage of clinicians other than endocrinologists identifying CS, the researchers noted, creates an educational opportunity to raise awareness among these specialists who may encounter patients with CS in their practices and therefore improve early diagnosis.

“Delays in diagnosis may contribute to persistent symptoms after treatment,” the study authors wrote. “Care of patients with persistent comorbidities affecting the QOL (eg, obesity, cognitive impairment, depression, and muscle weakness) could be improved through more frequent multidisciplinary collaboration with healthcare professionals outside of endocrinology.