THU040 Different Patient Versus Provider Perspectives On Living With Cushing’s Disease

Abstract

Abstract Disclosure: A. Halstrom: None. I. Lin: None. M. Cohen: None. V. Tabar: None. E.B. Geer: None. Background: Patients with Cushing’s disease (CD) face many challenges living with and receiving appropriate care for this rare, chronic condition. Even with successful treatment, many continue to experience ongoing symptoms and impaired quality of life (QoL). Different perspectives and expectations between patients and healthcare providers (HCPs) may contribute to impaired well-being in this patient population. Due to a growing need for accessible virtual educational programs, the Memorial Sloan Kettering (MSK) Pituitary Center established an annual pituitary disease symposium for pituitary patients and HCPs. The current study examined differences in attitudes surrounding living with CD between CD patients and HCPs who attended these events. Methods: Through anonymous pre-program surveys distributed at 2020 and 2022 MSK symposia, patients and HCPs answered questions related to their own sense, or perception of their patients’ sense, of hope, choice, and loneliness in the context of living with CD. Our specific aims were to examine differences in perspectives on living with CD between patients and HCPs, and to compare care goals and unmet needs between patients and HCPs. The Chi-square test or Fisher’s exact test were used to compare survey responses between patients and HCPs. Results: Overall attendance included participants from 25 countries. From a total of 655 participants over two educational events, 46 patients with CD and 116 HCPs caring for CD patients were included. Median age of both groups was 51 years. 78.3% of the patients were female vs. 60.2% of the HCPs. We identified differences in attitudes between patients and HCPs. More patients than HCPs reported they had no choices in their treatment (21.7% vs. 0.9%, P<0.001). Less than half (45.7%) of patients reported they had a lot of hope for improvement whereas 71.3% of HCPs had a lot of hope for their patients’ improvement. Interestingly, fewer CD patients reported feeling anxious about their diagnosis compared to HCPs’ perceived patient anxiety, (65.2% and 94.6% respectively, P<0.001). A higher percentage of patients reported feeling alone living with CD than HCPs’ perception of such (60.9% vs. 45.5%). The most common personal care goal concern for patients was ‘QoL/mental health,’ whereas it was ‘medical therapies/tumor control’ for HCPs. Patients reported ‘education/awareness’ to be the most common perceived CD unmet need, whereas HCPs reported this to be ‘medical therapies/tumor control. Conclusions: CD patients experience long term symptoms and impaired QoL which may in part be due a perception of lack of effective treatment options and little hope for improvement. Our study addressed differences in perceptions on living with this chronic condition between patients and HCPs. Communicating experiences and important care goals may improve long term outcomes for CD patients. Presentation: Thursday, June 15, 2023