Patient and Provider Perspectives on Postsurgical Recovery of Cushing Syndrome

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.

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

“…Physicians tended to underestimate weight gain and cognitive impairment during the active phase of the disease, and underestimate the prevalence of cognitive impairment, depressive symptoms and muscle weakness following treatment. A recent survey on physician vs patient perspectives on postsurgical recovery also highlighted important differences in perceptions, suggestive of poor communication ( 28 ). However, these comparisons are limited in that physicians’ estimations may be influenced by the clinical importance of certain symptoms, whereas for patients these may or may not be particularly onerous.…”

Glucocorticoid Withdrawal Syndrome following treatment of endogenous Cushing Syndrome

“…Post-operative AI and GWS are some of the most challenging phases of management for endocrinologists and one of the most disheartening for CS patients. Many patients report feeling unprepared for the postsurgical recovery process[ 32 ]. For these reasons, it is important to prepare the patient prior to surgery for the difficult months ahead, and the same considerations apply to the commencement of medical therapies, as will be discussed later.…”

“…The most important treatment intervention is frequent reassurance to the patient that GWS typically resolves as the HPA axis recovers. Family members must be included in the conversation to help provide as much support as possible, as patients report that support from family and friends is the most helpful coping mechanism during the recovery process[ 32 ]. When appropriate, it may be necessary to provide the patient with temporary disability documentation, since GWS symptoms may be so severe to preclude gainful employment.…”

Quality of life impairment after a diagnosis of Cushing’s syndrome

“…org/licenses/by/4.0/. [12]. Physicians overestimate the benefits of work, exercise and activities, while patients find family/friends and rest to be helpful to cope with the complex postoperative period.…”

“…While the desire of patients is to lead a normal life, without limitations or pain, for the physician a normalization of biochemical data is the main item to consider a “cure”. Physicians tend to underestimate the time to complete postoperative recovery, while patients with adrenal etiologies experience longer duration of adrenal insufficiency requiring cortisol replacement [ 12 ]. Physicians overestimate the benefits of work, exercise and activities, while patients find family/friends and rest to be helpful to cope with the complex postoperative period.…”