Abstract
Context
Cushing’s syndrome (CS) is associated with impaired health-related quality of life (HRQOL) even after surgical cure.
Objective
To characterize patient and provider perspectives on recovery from CS, drivers of decreased HRQOL during recovery, and ways to improve HRQOL.
Design
Cross-sectional observational survey
Participants
Patients (n=341) had undergone surgery for CS and were members of the Cushing’s Support and Research Foundation. Physicians (n=54) were Pituitary Society physician members and academicians who treated patients with CS.
Results
Compared to patients, physicians underestimated the time to complete recovery after surgery (12 months vs 18 months, p=0.0104). Time to recovery did not differ by CS etiology, but patients with adrenal etiologies of CS reported a longer duration of cortisol replacement medication (CRM) compared to patients with Cushing’s disease (12 months vs 6 months, p=0.0025). Physicians overestimated the benefits of work (26.9% vs 65.3%, p <0.0001), exercise (40.9% vs 77.6%, p=0.0001), and activities (44.8% vs 75.5%, p=0.0016) as useful coping mechanisms in the post-surgical period. Most patients considered family/friends (83.4%) and rest (74.7%) to be helpful. All physicians endorsed educating patients on recovery, but 32.4% (95% CI 27.3%-38.0%) of patients denied receiving sufficient information. Some patients did not feel prepared for the post-surgical experience (32.9%, 95% CI 27.6%-38.6%) and considered physicians not familiar enough with CS (16.1%, 95% CI 12.2%-20.8%).
Conclusion
Poor communication between physicians and CS patients may contribute to dissatisfaction with the post-surgical experience. Increased information on recovery, including helpful coping mechanisms, and improved provider-physician communication may improve HRQOL during recovery.
The Pathophysiology and Treatment of Hypertension in Patients With Cushing's Syndrome
