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Long-Term Impaired Quality of Life in Cushing’s Syndrome despite Initial Improvement after Surgical Remission

Reproductive Biology and Medicine Branch (J.R.L., L.K.N., S.B.), Division of Epidemiology Statistics and Prevention Research (T.N.), National Institute of Child Health and Human Development, and National Institute of Allergy and Infectious Diseases (J.G.), National Institutes of Health, Bethesda, Maryland 20892

Address all correspondence and requests for reprints to: Dr. Lynnette K. Nieman, Reproductive Biology and Medicine Branch, National Institute of Child Health and Human Development, National Institutes of Health, Building 10, Clinical Research Center, Room 1-3140, 10 Center Drive, Bethesda, Maryland 20892-1109. E-mail: niemanl{at}mail.nih.gov.

Context: Cushing’s syndrome (CS) is associated with symptoms that may impair health-related quality of life (HRQL).

Methods: We used the short-form 36 survey to evaluate HRQL in 23 patients with Cushing’s disease before and after transsphenoidal surgery (age, 42.7 ± 12.0 yr; 19 women and four men) and in a cross-section of 343 CS patients (age, 48.2 ± 14.1 yr; 265 women and 78 men) in remission for up to 25.8 yr after surgery (adrenal, 5%; ectopic, 6%). The z-scores were calculated for short-form 36 domains, and physical (PCS) and mental (MCS) summary scores were compared with those of age- and sex-matched controls (n = 6742).

Results: Active Cushing’s disease was associated with low PCS and MCS scores (P < 0.05). Despite residual postoperative impairment, primarily of physical domains, all HRQL parameters improved after treatment with transsphenoidal surgery (3.2 ± 1.5 yr; P < 0.05). In the cross-section in remission at follow-up, there was a small, but significant (P < 0.05), impairment of both PCS and MCS. A longitudinal postoperative analysis confirmed stable, but impaired, HRQL over time. Logistic regression demonstrated that previous pituitary radiation and current glucocorticoid use had little effect on HRQL outcomes.

Conclusion: CS is associated with impaired HRQL, which partially resolves after treatment. At longer-term follow-up, however, there is residual impairment of HRQL. Determination of modifiable factors that contribute to impaired HRQL may help reduce the physical and psychosocial burden of this disease.

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