Abstract and Introduction
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, 12.2–20.8).
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.
First-line treatment of Cushing syndrome (CS) is surgical resection of the primary disease-causing lesion, which may be a pituitary tumor in the case of Cushing disease (CD), an ectopic ACTH-secreting tumor, or ACTH-independent adrenal lesion(s). However, the sequelae of chronic hypercortisolemia, including cardiovascular, musculoskeletal, metabolic, cognitive, and psychiatric disease, may persist long after surgical cure.[2–7] Patients also require cortisol replacement medication (CRM) after surgery to avoid adrenal insufficiency and life-threatening adrenal crisis until the hypothalamic-pituitary-adrenal axis recovers.[1,8]
Health-related quality of life (HRQOL) is decreased in CS, and it remains lower than the reference population after biochemical remission is achieved.[9–14] A recent meta-analysis of 2643 patients with CS demonstrated that HRQOL and cognitive functioning improve but do not normalize to those of the general population after treatment. An Endocrine Society Clinical Practice Guideline on CS treatment recommends lifelong management of the comorbidities associated with chronic hypercortisolemia to improve mortality and HRQOL.
Drivers of reduced HRQOL have been explored.[16–19] These include patient dissatisfaction with the medical profession regarding diagnosis, treatment, and aftercare for CS. Patients cite delays in diagnosis after the onset of symptoms,[17,18] a lack of adequate information and education about treatment and recovery,[16,17] and a dearth of health care professionals who are informed about CS[16,18] as particularly detrimental to quality of life.
To design interventions aimed at improving HRQOL during remission from CS, a robust understanding of patients' perspectives on the postsurgical recovery process is needed. Given physicians' advisory role, and the dissatisfaction of patients with the quality of that relationship, it is also important to understand the physicians' perspectives on recovery. To our knowledge, no data exist on providers' opinions of or approaches to CS recovery.
Our survey approach was designed to further characterize patients' experience of recovery from CS, identify modifiable factors that may contribute to reduced HRQOL after surgical cure, and to compare patients' and physicians' perspectives on the recovery from this disease. Importantly, we attempted to incorporate both questions with "objective," quantifiable answers, and others that could be interpreted using a hermeneutic phenomenology approach.
J Endo Soc. 2021;5(8) © 2021 Endocrine Society