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.
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Funding for this study was provided by Novartis Pharmaceuticals Corporation.
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Maureen P. Neary and Qayyim Said are employees of the Novartis Pharmaceuticals Corporation. Michael S. Broder, Dasha Cherepanov, Marianne Eagan, and Jackie Lee are employees of the Partnership for Health Analytic Research, LLC, a health services research company paid by Novartis to conduct this research. Beverly MK Biller has been PI of research grants to Massachusetts General Hospital from Cortendo and Novartis and has served as an occasional consultant to Cortendo, HRA Pharma, Ipsen and Novartis. Eliza B. Geer has been PI of a research grant from Novartis and has served as an occasional consultant to Cortendo, Novartis, IONIS, and Chiasma. Laurence Katznelson has been PI of a research grant from Novartis and is a consultant for Pfizer, Novartis and Chiasma. John Carmichael has been PI of research grants from Novartis and Cortendo, and has served as a consultant to Pfizer, Novartis, Chiasma, and Ionis. Murray B. Gordon has been PI of research grants from Cortendo, Ipsen, Opko, Pfizer, Teva, Novartis, Chiasma, NovoNordisk and Corcept and has served as an occasional consultant to Novartis, Ibsen, Corcept and NovoNordisk. Ismat Shafiq and Ekaterina Manuylova received a research grant from Novartis, and also occasionally consultant for Novartis. The content of the manuscript was discussed in detail by the investigators led by the first author, Dr. Geer, and the first draft was then prepared by authors from Partnership for Health Analytic Research. Subsequently, the investigators provided substantial edits with several revisions being circulated and all authors approved the final, submitted version. Novartis authors reviewed the manuscript but did not write or edit the text.
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This article does not contain any studies with human participants or animals performed by any of the authors.
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Geer, E.B., Ayala, A., Bonert, V. et al. Follow-up intervals in patients with Cushing’s disease: recommendations from a panel of experienced pituitary clinicians. Pituitary 20, 422–429 (2017). https://doi.org/10.1007/s11102-017-0801-2
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DOI: https://doi.org/10.1007/s11102-017-0801-2