Endocrine Abstracts

Background: Early diagnosis of Cushing’s syndrome and initiation of effective treatment are essential to limit long-term morbidity and early mortality. However, diagnosis is often delayed due to the non-specificity of symptoms, or because symptoms are not recognised by physicians, leading to more complex treatment needs and a worsening of patient quality of life. A survey was conducted to better understand the patient experience of Cushing’s syndrome and the true burden of the disease. Here we report preliminary results from an interim analysis.

Method: An 11-question online patient survey, available in English and translated to eight languages, was distributed via the World Alliance of Pituitary Organisations and local patient organisations. All survey feedback received between 19 March 2019 and 19 January 2020 was analysed.

Results: In total, 250 participants from 26 countries participated; 58% of participants were aged 35–54 years and 92% were female. After diagnosis and subsequent treatment, 37% of participants surveyed reported that they were not satisfied with their treatment. The five symptoms reported most burdensome were obesity/weight gain (15.5%), fatigue (10.7%), depression/mood problems (9.5%), sleep disturbances (8.7%) and anxiety (8.2%). A delay in diagnosis of more than 2 years was reported in almost half of survey participants and a delay of more than 3 years was reported in 27% of participants. Endocrinologists (62.4%), followed by primary care physicians (16.0%), most commonly made the initial diagnosis or prescribed screening tests for Cushing’s syndrome Endocrinologists (98%) and primary care physicians (53%) were also most commonly involved in disease management after diagnosis. After treatment, 83% of participants still experienced symptoms of Cushing’s syndrome, including fatigue (72.0%), muscle weakness (47.0%), obesity/weight gain (43.1%), memory problems (41.4%) and lack of attention/concentration (38.8%). Despite the ongoing nature of these symptoms, many patients reported not receiving treatment for them. The symptoms most commonly treated were depression/mood problems and anxiety (40.5%), hypertension (36.0%), bone problems and fragility (23.9%), sleep disturbances (17.0%) and muscle weakness (12.1%). Most participants said that their work and social life had been most affected by their illness.

Conclusion: Results from this survey suggest that many patients experience a delayed diagnosis and that even after diagnosis and treatment, patients can continue to experience symptoms that affect their work and social life, and the disease burden post treatment remains high. Correct and timely diagnosis, as well as management strategies that address the wider symptoms of the disease, may improve the patient experience.