Alicia K Morgans1, Annelotte C M van Bommel2, Caleb Stowell3, Janet L Abrahm4, Ethan Basch5, Justin E Bekelman6, Donna L Berry4, Alberto Bossi7, Ian D Davis8, Theo M de Reijke9, Louis J Denis10, Sue M Evans11, Neil E Fleshner12, Daniel J George13, Jim Kiefert14, Daniel W Lin15, Andrew G Matthew12, Ray McDermott16, Heather Payne17, Ian A G Roos18, Deborah Schrag4, Thomas Steuber19, Bertrand Tombal20, Jean-Paul van Basten21, Jacobus J M van der Hoeven22, David F Penson23. 1. Vanderbilt University Medical Center, Nashville, TN, USA. Electronic address: alicia.morgans@vanderbilt.edu. 2. International Consortium for Health Outcomes Measurement, Cambridge, MA, USA; Dutch Institute for Clinical Auditing, Leiden, The Netherlands. 3. International Consortium for Health Outcomes Measurement, Cambridge, MA, USA. 4. Dana-Farber Cancer Institute, Boston, MA, USA. 5. University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 6. University of Pennsylvania, PA, USA. 7. Gustave Roussy Cancer Institute, Villejuif, France. 8. Monash University Eastern Health Clinical School, Melbourne, Australia. 9. Academic Medical Center Amsterdam, Amsterdam, The Netherlands. 10. Oncology Centre Antwerp, Antwerp, Belgium; US TOO Belgium, Antwerp, Belgium. 11. Monash University, Melbourne, Australia. 12. University of Toronto, Toronto, Canada. 13. Duke University Medical Center, Durham, NC, USA. 14. US TOO International, Des Plaines, IL, USA. 15. University of Washington, Seattle, WA, USA. 16. St. Vincent's University Hospital, Dublin, Ireland. 17. University College Hospitals London, London, UK. 18. Cancer Action Victoria, Melbourne, Australia. 19. University Hospital Hamburg-Eppendorf, Hamburg, Germany. 20. Cliniques Universitaires Saint Luc, Université Catholique de Louvain, Brussels, Belgium. 21. Canisius Wilhelmina Hospital, Nijmegen, The Netherlands. 22. Leiden University Medical Center, Leiden, The Netherlands. 23. Vanderbilt University Medical Center, Nashville, TN, USA; VA Tennessee Valley Geriatric Research, Education, and Clinical Center (GRECC), Nashville, TN, USA.
Abstract
BACKGROUND: There are no universally monitored outcomes relevant to men with advanced prostate cancer, making it challenging to compare health outcomes between populations. OBJECTIVE: We sought to develop a standard set of outcomes relevant to men with advanced prostate cancer to follow during routine clinical care. DESIGN, SETTING, AND PARTICIPANTS: The International Consortium for Health Outcomes Measurement assembled a multidisciplinary working group to develop the set. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: We used a modified Delphi method to achieve consensus regarding the outcomes, measures, and case mix factors included. RESULTS AND LIMITATIONS: The 25 members of the multidisciplinary international working group represented academic and nonacademic centers, registries, and patients. Recognizing the heterogeneity of men with advanced prostate cancer, the group defined the scope as men with all stages of incurable prostate cancer (metastatic and biochemical recurrence ineligible for further curative therapy). We defined outcomes important to all men, such as overall survival, and measures specific to subgroups, such as time to metastasis. Measures gathered from clinical data include measures of disease control. We also identified patient-reported outcome measures (PROMs), such as degree of urinary, bowel, and erectile dysfunction, mood symptoms, and pain control. CONCLUSIONS: The international multidisciplinary group identified clinical data and PROMs that serve as a basis for international health outcome comparisons and quality-of-care assessments. The set will be revised annually. PATIENT SUMMARY: Our international group has recommended a standardized set of patient-centered outcomes to be followed during routine care for all men with advanced prostate cancer.
BACKGROUND: There are no universally monitored outcomes relevant to men with advanced prostate cancer, making it challenging to compare health outcomes between populations. OBJECTIVE: We sought to develop a standard set of outcomes relevant to men with advanced prostate cancer to follow during routine clinical care. DESIGN, SETTING, AND PARTICIPANTS: The International Consortium for Health Outcomes Measurement assembled a multidisciplinary working group to develop the set. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: We used a modified Delphi method to achieve consensus regarding the outcomes, measures, and case mix factors included. RESULTS AND LIMITATIONS: The 25 members of the multidisciplinary international working group represented academic and nonacademic centers, registries, and patients. Recognizing the heterogeneity of men with advanced prostate cancer, the group defined the scope as men with all stages of incurable prostate cancer (metastatic and biochemical recurrence ineligible for further curative therapy). We defined outcomes important to all men, such as overall survival, and measures specific to subgroups, such as time to metastasis. Measures gathered from clinical data include measures of disease control. We also identified patient-reported outcome measures (PROMs), such as degree of urinary, bowel, and erectile dysfunction, mood symptoms, and pain control. CONCLUSIONS: The international multidisciplinary group identified clinical data and PROMs that serve as a basis for international health outcome comparisons and quality-of-care assessments. The set will be revised annually. PATIENT SUMMARY: Our international group has recommended a standardized set of patient-centered outcomes to be followed during routine care for all men with advanced prostate cancer.
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