Eliza B Geer1, Alejandro Ayala2, Vivien Bonert3, John D Carmichael4, Murray B Gordon5, Laurence Katznelson6, Ekaterina Manuylova7, Ismat Shafiq7, Vijaya Surampudi8, Ronald S Swerdloff8, Michael S Broder9, Dasha Cherepanov9, Marianne Eagan9, Jackie Lee9, Qayyim Said10, Maureen P Neary10, Beverly M K Biller11. 1. Memorial Sloan Kettering Cancer Center, 1275 York Avenue, New York, NY, USA. geere@mskcc.org. 2. University of Miami and Jackson Memorial Hospital, 1500 NW 10th Avenue, Miami, FL, USA. 3. Cedars-Sinai Medical Center, 8700 Beverly Blvd, Los Angeles, CA, USA. 4. Keck School of Medicine of University of Southern California, 1520 San Pablo Street, Los Angeles, CA, USA. 5. Allegheny Neuroendocrinology Center, Allegheny General Hospital, 420 East North Avenue, Pittsburgh, PA, USA. 6. Stanford University School of Medicine, 875 Blake Wilbur Drive, Stanford, CA, USA. 7. University of Rochester School of Medicine and Dentistry, 601 Elmwood Avenue, Rochester, NY, USA. 8. Harbor-UCLA Medical Center, 1124 W. Carson St., Torrance, CA, USA. 9. Partnership for Health Analytic Research, LLC, 280 S. Beverly Drive, Beverly Hills, CA, USA. 10. Novartis Pharmaceuticals Corporation, One Health Plaza, East Hanover, NJ, USA. 11. Massachusetts General Hospital, 55 Fruit Street, Boston, MA, USA.
Abstract
PURPOSE: Follow-up guidelines are needed to assess quality of care and to ensure best long-term outcomes for patients with Cushing's disease (CD). The purpose of this study was to assess agreement by experts on recommended follow-up intervals for CD patients at different phases in their treatment course. METHODS: The RAND/UCLA modified Delphi process was used to assess expert consensus. Eleven clinicians who regularly manage CD patients rated 79 hypothetical patient scenarios before and after ("second round") an in-person panel discussion to clarify definitions. Scenarios described CD patients at various time points after treatment. For each scenario, panelists recommended follow-up intervals in weeks. Panel consensus was assigned as follows: "agreement" if no more than two responses were outside a 2 week window around the median response; "disagreement" if more than two responses were outside a 2 week window around the median response. Recommendations were developed based on second round results. RESULTS: Panel agreement was 65.9% before and 88.6% after the in-person discussion. The panel recommended follow-up within 8 weeks for patients in remission on glucocorticoid replacement and within 1 year of surgery; within 4 weeks for patients with uncontrolled persistent or recurrent disease; within 8-24 weeks in post-radiotherapy patients controlled on medical therapy; and within 24 weeks in asymptomatic patients with stable plasma ACTH concentrations after bilateral adrenalectomy. CONCLUSIONS: With a high level of consensus using the Delphi process, panelists recommended regular follow-up in most patient scenarios for this chronic condition. These recommendations may be useful for assessment of CD care both in research and clinical practice.
PURPOSE: Follow-up guidelines are needed to assess quality of care and to ensure best long-term outcomes for patients with Cushing's disease (CD). The purpose of this study was to assess agreement by experts on recommended follow-up intervals for CDpatients at different phases in their treatment course. METHODS: The RAND/UCLA modified Delphi process was used to assess expert consensus. Eleven clinicians who regularly manage CDpatients rated 79 hypothetical patient scenarios before and after ("second round") an in-person panel discussion to clarify definitions. Scenarios described CDpatients at various time points after treatment. For each scenario, panelists recommended follow-up intervals in weeks. Panel consensus was assigned as follows: "agreement" if no more than two responses were outside a 2 week window around the median response; "disagreement" if more than two responses were outside a 2 week window around the median response. Recommendations were developed based on second round results. RESULTS: Panel agreement was 65.9% before and 88.6% after the in-person discussion. The panel recommended follow-up within 8 weeks for patients in remission on glucocorticoid replacement and within 1 year of surgery; within 4 weeks for patients with uncontrolled persistent or recurrent disease; within 8-24 weeks in post-radiotherapy patients controlled on medical therapy; and within 24 weeks in asymptomatic patients with stable plasma ACTH concentrations after bilateral adrenalectomy. CONCLUSIONS: With a high level of consensus using the Delphi process, panelists recommended regular follow-up in most patient scenarios for this chronic condition. These recommendations may be useful for assessment of CD care both in research and clinical practice.
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