Between January and March of 2014, the CSRF sent emails to members requesting participation in a survey on the impact of Cushing’s on quality of life. The study was also posted to the CSRF website and Facebook page.  In total, 274 members completed the survey, making this one of largest studies conducted on the quality of life (QoL) of people with Cushing’s. Thank you for your participation! Some results from the survey were presented during an oral presentation at the prestigious Clinical Congress of the American College of Surgeons in October, 2014¹ and plans to submit this work for publication in a medical journal are underway.

Health related quality of life questionnaires have become an essential tool in determining the impact of a disease on an individual’s daily life. Data from these questionnaires is also essential at a societal and governmental level for estimating lost work time from illness, weighing treatment modalities, identifying issues and estimating health costs.  A number of studies have shown that while QoL does improve following biochemical cure of Cushing’s, QoL may not return to the level of normal controls.^2-6 Most previous studies are limited by the relatively small numbers of patients surveyed and the use of generic health related quality of life questionnaires, such as the SF-12 and SF-36, which do not specifically address symptoms of patients with Cushing’s. 

Our study used a validated, disease specific Cushing’sQoL survey⁷. The CushingQoL questionnaire is comprised of 12 questions with 5 possible answers. The CushingQoL questionnaire addresses known problem areas in Cushing’s such as trouble sleeping, wound healing/bruising, irritability/mood swings/anger, self-confidence, physical changes, ability to participate in activities, interactions with friends and family, memory issues and future health concerns.  Further information on the CushingQoL survey (based on reference 2) can also be found on the CSRF website⁸. To better understand the factors associated with improved QoL scores, the survey included questions on demographics, status of Cushing’s, type of treatment, time prior to a diagnosis and other items.

Results

This study is one of the largest studies in the literature to evaluate the QoL of patients affected with Cushing’s and allows insights into this relatively rare clinical entity. Not surprisingly, this study noted that patients with active Cushing’s have a lower QoL score than those in remission regardless of a person’s sex or age. Additionally, individuals may be referred to many health care providers before the diagnosis of Cushing’s is made (median of four physicians). The median time to diagnosis was five years and importantly, this study demonstrated in a large population that people enduring a longer period of untreated or undiagnosed disease had significantly lower QoL scores compared to those diagnosed more quickly. This result indicates that a delay of diagnosis could have major impact on the QoL after biochemical cure from the disease even after multivariate analysis adjusts for the impact of other variables. However, it is important to note that this study is limited by self-selection bias and will have to be repeated using a randomized controlled trial design in order to draw any true conclusions.  Health care provider education for early recognition and diagnosis of Cushing’s is critical and will likely make a notable impact on a patient’s quality of life long after treatment of the disease.

References

1. Quality of Life in Patients Treated for Cushing’s Syndrome. Papoian V et al.  Presented at the American College of Surgeons Clinical Congress, October 27, 2014.
2. Hawn, M. T., Cook, D., Deveney, C. & Sheppard, B. C. Quality of life after laparoscopic bilateral adrenalectomy for Cushing’s disease. Surgery 132, 1064–1068; discussion 1068–1069 (2002).
3. Sippel, R. S. et al. Waiting for change: symptom resolution after adrenalectomy for Cushing’s syndrome. Surgery 144, 1054–1060; discussion 1060–1061 (2008).
4. Van Aken, M. O. et al. Quality of life in patients after long-term biochemical cure of Cushing’s disease. J. Clin. Endocrinol. Metab. 90, 3279–3286 (2005).
5. Alcalar, N. et al. Evaluation of depression, quality of life and body image in patients with Cushing’s disease. Pituitary 16, 333–340 (2013).
6. Iacobone, M. et al. Adrenalectomy may improve cardiovascular and metabolic impairment and ameliorate quality of life in patients with adrenal incidentalomas and subclinical Cushing’s syndrome. Surgery 152, 991–997 (2012).
7. Webb, S. M. et al. Evaluation of health-related quality of life in patients with Cushing’s syndrome with a new questionnaire. Eur. J. Endocrinol. 158, 623–630 (2008).
8. CSRF Website. Quality of Life After a Diagnosis of Cushing’s Syndrome 

Authors: Papoian V, Biller BMK, Campbell KK, Hodin RA, Webb SM, Phitayakorn R, Winter, 2014

Editor’s Note: Dr. Vardan Papoian is a surgeon at MedStar Washington Hospital Center in Washington, DC . Drs. Hodin and Phitayakorn are surgeons and Dr. Biller is an endocrinologist at the Massachusetts General Hospital, Boston, MA. Dr. Webb is an endocrinologist at Hospital Sant Pau, Autonomous University of Barcelona, CIBERER Unit 747 on Pituitary Diseases; Spain. Karen Campbell is a Director of the CSRF.