Patient and Provider Perspectives on Postsurgical Recovery of Cushing Syndrome.

Abstract

Context\nCushing syndrome (CS) is associated with impaired health-related quality of life (HRQOL) even after surgical cure.\n\n\nObjective\nTo characterize patient and provider perspectives on recovery from CS, drivers of decreased HRQOL during recovery, and ways to improve HRQOL.\n\n\nDesign\nCross-sectional observational survey.\n\n\nParticipants\nPatients (n\u2005=\u2005341) had undergone surgery for CS and were members of the Cushing s Support and Research Foundation. Physicians (n\u2005=\u200554) were Pituitary Society physician members and academicians who treated patients with CS.\n\n\nResults\nCompared with patients, physicians underestimated the time to complete recovery after surgery (12 months vs 18 months, P\u2005=\u20050.0104). 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\u2005=\u20050.0025). Physicians overestimated the benefits of work (26.9% vs 65.3%, P\u2005<\u20050.0001), exercise (40.9% vs 77.6%, P\u2005=\u20050.0001), and activities (44.8% vs 75.5%, P\u2005=\u20050.0016) 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, 12.2-20.8).\n\n\nConclusion\nPoor 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.