As Dr. Mary Lee Vance described in the summer 2009 newsletter of the Cushing’s Support and Research Foundation (CSRF), post-operative recovery from Cushing’s syndrome can be long and frustrating. Indeed, previous work has shown that patients continue to have subnormal quality of life even after pituitary and adrenal gland function return to normal. To better understand the recovery process in patients surgically treated for Cushing’s syndrome, the CSRF invited surgically-treated members to complete an open-ended survey about their experiences. Our research group then clustered the responses to determine how often specific topics were mentioned. By analyzing this open-ended survey, we were able to determine the most significant issues to CSRF members based on the topics that they mentioned in their responses.

Of the 94 CSRF members who participated in this survey, 84% reported overall negative recovery experiences. Respondents reported that they had trouble with (from highest to lowest percentage): lethargy, joint pains, problems thinking (such as difficulty paying attention or processing information), body weight, and depression. Patients also were concerned about the lack of information they received about the recovery process. Decisions to taper off exogenous cortisol replacement therapy (CRT) were made by the physician alone about twice as often as mutual decision-making between the patient and physician. Though the median time frame among 69 participants to discontinue CRT was 11 months (25-75 percentile of 6-18 months), the median time frame to perceived full-recovery for 49 participants was 20 months (25-75 percentile of 12-27 months). However, one participant wrote in the survey response that the recovery process was, “nothing as bad as I had read or expected.”

Many survey respondents also noted coping mechanisms utilized during their recovery process. The most common mechanism was support from family, friends, and physicians. Other mechanisms included: support groups, exercise, resting, completing activities considered normal before the onset of Cushing’s syndrome, pain relief, religion, and entertainment. One participant wrote that, “sad to say, had I not met [my endocrinologist], I probably would have committed suicide because I was so depressed, anxious, etc, and had given up hope.” The value of family, friends, and physicians in the recovery process suggests that additional patient and family education, as well as improved physician understanding of the recovery process, might improve patient satisfaction and perceived quality of life during recovery from Cushing’s syndrome.

Though these results provide insight into the daunting challenge faced by patients recovering from Cushing’s syndrome after surgical treatment, there is still much more to be learned. To build upon our current knowledge of the recovery process, our research group has created another patient survey with fixed responses to specific questions, to provide us with more quantifiable information on the patient recovery experience. We invite all surgically-treated CSRF members to complete this new short survey at http://csrecoverypatient.nichd.nih.gov. Please complete this survey, even if you completed the earlier one. By learning more about the recovery process, we hope to identify specific ways to improve the patient experience during recovery. We hope to publish these results in a medical journal and to provide a synopsis of the information in the CSRF newsletter. Thank you for your help.

Author: Brent Abel from the Research Group of Lynnette Nieman, MD National Institutes of Health, Bethesda, MD (Fall, 2012)

Editor’s Note: The research group of Dr. Lynnette Nieman has worked to improve testing for the diagnosis and differential diagnosis of Cushing’s syndrome. In particular, use of diurnal salivary cortisol, corticotropin releasing hormone (CRH) test and inferior petrosal sinus sampling have been important contributions from the NIH. Their current research focuses on the localization of ectopic ACTH-producing tumors, the patient experience and quality of life during and after Cushing’s syndrome, and the role of cortisol in the metabolic syndrome.