Support Needs of Patients with Cushing’s Disease and Cushing’s Syndrome: Results of a Survey Conducted in Germany and the USA

Abstract

Background Cushing's disease (CD) and Cushing's syndrome (CS) are chronic illnesses, characterized by symptoms of prolonged hypercortisolism, which often changes to hypocortisolism after successful treatment. In view of the high disease burden of CD/CS patients and long-term impaired quality of life, the present survey was conducted to gain information about subjective illness distress and patients' specific needs in terms of supportive measures beyond medical interventions. Patients and Methods Cross-sectional questionnaire study including patients with CD treated in 2 German neurosurgical tertiary referral centers and CD/CS patient members of a US-based patient support group completed a survey inquiring about disease burden, coping strategies, and support needs. Additionally, the degree of interest in different offers, e.g., internet-based programs and seminars, was assessed. Results 84 US and 71 German patients answered the questionnaire. Patients in both countries indicated to suffer from Cushing-related symptoms, reduced performance, and psychological problems. 48.8% US patients and 44.4% German patients stated that good medical care and competent doctors helped them the most in coping with the illness. US patients were more interested in support groups (p = 0.035) and in courses on illness coping (p = 0.008) than the German patients, who stated to prefer brochures (p = 0.001). 89.3% of US patients would attend internet-based programs compared to 75.4% of German patients (p = 0.040). There were no differences between groups for the preferred duration of and the willingness to pay for such a program, but US patients would travel longer distances to attend a support meeting (p = 0.027). Conclusion Patients in both countries need skilled physicians and long-term medical care in dealing with the effects of CD/CS, whereas other support needs differ between patients of both countries. The latter implies that not only disease-specific but also culture-specific training programs would need to be considered to satisfy the needs of patients in different countries.

Unmet needs in Cushing’s syndrome: the patients’ perspective

“…The present survey confirmed that no specific symptom initiated a diagnosis, but rather a range of burdensome symptoms occurring with similar frequency to those reported in previous surveys ( 1 , 2 ), with the notable difference in that in a USA-German survey, cognitive and psychological symptoms were bothersome for 61% of US and 66% of German patients ( 13 ), whereas in the present survey 38% considered depression/mood problems burdensome. Such differences may be a result of different terms being used to describe depression or mood symptoms as well as cultural differences between populations.…”

Quality of Life in Patients With Cushing's Disease

“…Regarding educational and support programs, most of the patients preferred internet-based programs (89.3% US, 75.4% Germany). However, cultural differences and specific needs may differ in different populations of patients with CS (105). In other chronic diseases programs that improve self-manegement (where the patient has a more active role) have lead to better health status and increased QoL (105).…”

“…However, cultural differences and specific needs may differ in different populations of patients with CS (105). In other chronic diseases programs that improve self-manegement (where the patient has a more active role) have lead to better health status and increased QoL (105). Consequently, it would be helpful to develop specific programs for patients with CD too.…”

Patient Support Groups are an Important Component of Your Toolbox for Patient Education

“…Also, PSG assist members to feel empowered in a situation that may induce feelings of helplessness by seeing how others in similar situation coped and by helping others. A recent study identified cultural differences in support needs of patients, so it is important to assess cultural preferences of the patient when evaluating the best fit with a PSG (Kreitschmann-Andermahr et al, 2018). In addition, some PSG are focused on providing support and education for family members, caregivers, friends, of someone with a chronic medical condition.…”