Patient And Provider Perspectives On Postsurgical Recovery Of Cushing Syndrome

Context: Cushing 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 with 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 compared with patients with Cushing 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 postsurgical 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 postsurgical experience (32.9%; 95% CI, 27.6-38.6) and considered physicians not familiar enough with CS (16.1%; 95% CI, 12.2-20.Conclusion: Poor communication between physicians and CS patients may contribute to dissatisfaction with the postsurgical experience. Increased information on recovery, including helpful coping mechanisms, and improved provider-physician communication may improve HRQOL during recovery.