As an endocrine nurse who took care of all phases of Cushing’s disease/syndrome patients, from confirming their Cushing’s diagnosis through treatment options, I have often wondered about their life at home years after they were treated for their Cushing’s disease (CD). What symptoms most influenced their life when they had Cushing’s? Did their symptoms decrease after treatment? How were they currently doing? Was there any information they needed about post CD treatment expectations? To help answer these and other questions, I applied for and received a nursing grant from the Endocrine Nurses Society (ENS) to study quality of life (QOL) and CD. The following is an excerpt from my presentation at the ENS meetings held in June 1999 in San Diego, California. More specific information and data will follow in a future scientific publication. Special thanks to my collaborators, Dr. Tonja R. Nansel, NICHD, and Dr. Lynnette K. Nieman, NICHD, on this study.

While many of the symptoms of CD adversely affect QOL, few studies formally evaluate this aspect of the disease and its improvement after surgical cure. Transsphenoidal resection of ACTH-secreting tumors induces remission of CD in most patients. We hypothesized that QOL would be diminished in active CD and would improve after treatment as CD symptoms resolve. Health-related quality of life for our study is defined by one’s functional status, as well as physical and mental well-being. Current professional or lay literature does not address QOL and whether it improves after treatment for CD.

We developed a QOL questionnaire using a modification of the SF-36 tool. The SF-36 tool is the gold standard for QOL as it is a validated and reliable tool. It is a comprehensive, short form with only 36 questions. This tool measures health status and outcomes from the patient’s point of view The SF-36 health survey measures 8 health concepts, which are relevant across age, disease, and treatment groups.

These health concepts include limitations in physical activities, limitations in usual role activities because of physical problems, bodily pain, general health, vitality (energy and fatigue), limitations in social activities because of emotional problems, limitations in usual role activities because of emotional problems, and mental health. Eight health scores as well as summary physical and mental health measures are compiled from the survey and can then be compared to both the normal as well as certain disease populations.

We mailed a post-treatment follow-up survey to 415 patients who were treated at NIH for CD from 1982 to 1991. It was self-administered and included demographics; recurrence of Cushing’s questions; treatment outcome questions; CD symptom checklist prior to treatment and now; and the SF-36 survey with added questions. Our CD patients were from all over the world as well as from all across the United States. So as to not jeopardize future publication of specific results, I will summarize some of our findings briefly here. I will refer you to read the data when it is published in an upcoming journal. In general, slightly more than one-half of the patients thought they were currently cured and that their current QOL was “pretty good or very good”. Before treatment, patients reported a mean of 21.9 symptoms whereas after treatment, patients reported a mean of 8.4 symptoms. Weight gain and fatigue were the most common symptoms both before and after treatment. Facial hair and weight gain were the most bothersome symptoms both before and after treatment as well. Patients also reported unclear thinking and an inability to work as bothersome symptoms. We compared our treated CD patients as a group with patients who have high blood pressure, diabetes, and congestive heart failure and to a few current Cushing’s patients with active disease. In regards to physical functioning and physical summary scores, the treated CD patients in general do better than the congestive heart failure patients but not as well as the general population. Our CD population compared favorably to all groups in the mental summary scores.

As a nurse, I am very interested in learning what information CD patients would have liked to have known prior to treatment. Many of the patients shared their thoughts with us. Length and preparation of recovery time, inability to lose weight, and post-operative pain were the most common themes. Therefore, more patient education on what to expect could be expanded in both our pre-operative and post-operative teaching.

Since there is so little published information regarding the patients’ perspective and CD, we need to be aware of their point of view in helping them cope with their CD. I thank all of the patients who participated in our study. More research work needs to be done in the future. As one patient wrote, “The quality of life does not instantly return once your cortisol level returns to normal. It takes work to get there. Please explore that in your study.”

Author: Julie Gumowski, RN, BSN, Nurse Specialist, NIAID, National Institutes of Health (November, 1999)