An Overview of Patient-reported Outcomes for Men with Prostate Cancer: Results from the PIONEER Consortium
Background and objective: Patient-reported outcome measures (PROMs) are increasingly being used to capture the patients’ perspective of their functional status and quality of life (QoL). Big data can help us better understand patient-reported outcomes (PROs). Using prospectively collected data from...
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Elsevier
2025-01-01
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| Series: | European Urology Open Science |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2666168324014320 |
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| author | Sebastiaan Remmers Katharina Beyer Tariq A. Lalmahomed Peter Prinsen Nicole J.E. Horevoorts Nora Tabea Sibert Christoph Kowalski Francesco Barletta Oliver Brunckhorst Giorgio Gandaglia Jochem R.N. van der Voort van Zyp Emma J. Smith Andre Deschamps Laurence Collette Philip Cornford Susan Evans-Axelsson James N’Dow Mieke Van Hemelrijck Monique J. Roobol Lionne D.F. Venderbos |
| author_facet | Sebastiaan Remmers Katharina Beyer Tariq A. Lalmahomed Peter Prinsen Nicole J.E. Horevoorts Nora Tabea Sibert Christoph Kowalski Francesco Barletta Oliver Brunckhorst Giorgio Gandaglia Jochem R.N. van der Voort van Zyp Emma J. Smith Andre Deschamps Laurence Collette Philip Cornford Susan Evans-Axelsson James N’Dow Mieke Van Hemelrijck Monique J. Roobol Lionne D.F. Venderbos |
| author_sort | Sebastiaan Remmers |
| collection | DOAJ |
| description | Background and objective: Patient-reported outcome measures (PROMs) are increasingly being used to capture the patients’ perspective of their functional status and quality of life (QoL). Big data can help us better understand patient-reported outcomes (PROs). Using prospectively collected data from the Prostate Cancer Diagnosis and Treatment Enhancement Through the Power of Big Data in Europe (PIONEER) consortium, we aimed to describe the functional status and QoL in men with prostate cancer (PCa) treated with active surveillance (AS), radical prostatectomy (RP), and radiotherapy (RT), and to demonstrate the applicability of PROM data on a large scale and at a European level. Methods: We identified data sources that collected QoL data using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30, EORTC QLQ-PR25, or Expanded Prostate Cancer Index Composite (EPIC)-26/50 questionnaires. Aggregated summary scores for urinary, bowel, and sexual dysfunction, global health status, and QoL were shared for each data source. Key findings and limitations: We identified eight data sources originating from various settings: routine hospital data, embedded research PRO collection, survey data collected by a patient organization, multi-institutional prospective cohort study, and registry data. PRO data were available for 709 men on AS, 20 508 on RP, and 3417 on RT, with a median time between diagnosis and PROM assessment ranging from 1 to 8.7 yr. Most men were diagnosed with Gleason ≤7 disease, and T1 or T2 PCa. We observed that sexual dysfunction was the most affected PRO and found large differences between data sources. Conclusions and clinical implications: Our results support the feasibility of PRO assessment using big data in Europe. Implementation of PROMs in clinical practice and the use of standardized methods could improve value-based health care provision. Patient summary: In this study, we combined several data sources that reported urinary, bowel, and sexual dysfunction, global health status, and quality of life. We identified eight data sources and show that sexual function is the most affected domain after treatment. |
| format | Article |
| id | doaj-art-0b079da9afc54a06b7c87515f93f9c5f |
| institution | Kabale University |
| issn | 2666-1683 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Elsevier |
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| series | European Urology Open Science |
| spelling | doaj-art-0b079da9afc54a06b7c87515f93f9c5f2025-01-17T04:52:22ZengElsevierEuropean Urology Open Science2666-16832025-01-0171106113An Overview of Patient-reported Outcomes for Men with Prostate Cancer: Results from the PIONEER ConsortiumSebastiaan Remmers0Katharina Beyer1Tariq A. Lalmahomed2Peter Prinsen3Nicole J.E. Horevoorts4Nora Tabea Sibert5Christoph Kowalski6Francesco Barletta7Oliver Brunckhorst8Giorgio Gandaglia9Jochem R.N. van der Voort van Zyp10Emma J. Smith11Andre Deschamps12Laurence Collette13Philip Cornford14Susan Evans-Axelsson15James N’Dow16Mieke Van Hemelrijck17Monique J. Roobol18Lionne D.F. Venderbos19Department of Urology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, The Netherlands; Division of Oncology/Unit of Urology, Gianfranco Soldera Prostate Cancer Lab, IRCCS San Raffaele Scientific Institute, Vita‐Salute SanRaffaele University, Milan, Italy; Corresponding author. Department of Urology, Erasmus University Medical Center, P.O. Box 2040, Dr. Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands. Tel. +31 10 703 2239.Department of Urology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, The NetherlandsDepartment of Radiation Oncology, University Medical Center Utrecht, Utrecht, The NetherlandsDepartment of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Eindhoven, The NetherlandsDepartment of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Eindhoven, The Netherlands; Center of Research on Psychological Disorders and Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The NetherlandsGerman Cancer Society, Berlin, GermanyGerman Cancer Society, Berlin, GermanyDivision of Oncology/Unit of Urology, Gianfranco Soldera Prostate Cancer Lab, IRCCS San Raffaele Scientific Institute, Vita‐Salute SanRaffaele University, Milan, ItalyMRC Centre for Transplantation, Guy’s Hospital Campus, King’s College London, King’s Health Partners, London, UKDivision of Oncology/Unit of Urology, Gianfranco Soldera Prostate Cancer Lab, IRCCS San Raffaele Scientific Institute, Vita‐Salute SanRaffaele University, Milan, ItalyDepartment of Radiation Oncology, University Medical Center Utrecht, Utrecht, The NetherlandsEuropean Association of Urology, Guidelines Office, Arnhem, The NetherlandsEuropa Uomo, Antwerp, BelgiumEuropean Association of Urology, Guidelines Office, Arnhem, The NetherlandsEuropean Association of Urology, Guidelines Office, Arnhem, The NetherlandsMedical Affairs Oncology, Bayer AB, Stockholm, SwedenAcademic Urology Unit, University of Aberdeen, Aberdeen, ScotlandTransforming Cancer Outcomes Through Research, Faculty of Life Science of Medicine, King’s College London, London, UKDepartment of Urology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, The NetherlandsDepartment of Urology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, The NetherlandsBackground and objective: Patient-reported outcome measures (PROMs) are increasingly being used to capture the patients’ perspective of their functional status and quality of life (QoL). Big data can help us better understand patient-reported outcomes (PROs). Using prospectively collected data from the Prostate Cancer Diagnosis and Treatment Enhancement Through the Power of Big Data in Europe (PIONEER) consortium, we aimed to describe the functional status and QoL in men with prostate cancer (PCa) treated with active surveillance (AS), radical prostatectomy (RP), and radiotherapy (RT), and to demonstrate the applicability of PROM data on a large scale and at a European level. Methods: We identified data sources that collected QoL data using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30, EORTC QLQ-PR25, or Expanded Prostate Cancer Index Composite (EPIC)-26/50 questionnaires. Aggregated summary scores for urinary, bowel, and sexual dysfunction, global health status, and QoL were shared for each data source. Key findings and limitations: We identified eight data sources originating from various settings: routine hospital data, embedded research PRO collection, survey data collected by a patient organization, multi-institutional prospective cohort study, and registry data. PRO data were available for 709 men on AS, 20 508 on RP, and 3417 on RT, with a median time between diagnosis and PROM assessment ranging from 1 to 8.7 yr. Most men were diagnosed with Gleason ≤7 disease, and T1 or T2 PCa. We observed that sexual dysfunction was the most affected PRO and found large differences between data sources. Conclusions and clinical implications: Our results support the feasibility of PRO assessment using big data in Europe. Implementation of PROMs in clinical practice and the use of standardized methods could improve value-based health care provision. Patient summary: In this study, we combined several data sources that reported urinary, bowel, and sexual dysfunction, global health status, and quality of life. We identified eight data sources and show that sexual function is the most affected domain after treatment.http://www.sciencedirect.com/science/article/pii/S2666168324014320Big dataPatient-reported outcomeProstatic neoplasmsUrinary dysfunctionSexual dysfunctionErectile dysfunction |
| spellingShingle | Sebastiaan Remmers Katharina Beyer Tariq A. Lalmahomed Peter Prinsen Nicole J.E. Horevoorts Nora Tabea Sibert Christoph Kowalski Francesco Barletta Oliver Brunckhorst Giorgio Gandaglia Jochem R.N. van der Voort van Zyp Emma J. Smith Andre Deschamps Laurence Collette Philip Cornford Susan Evans-Axelsson James N’Dow Mieke Van Hemelrijck Monique J. Roobol Lionne D.F. Venderbos An Overview of Patient-reported Outcomes for Men with Prostate Cancer: Results from the PIONEER Consortium European Urology Open Science Big data Patient-reported outcome Prostatic neoplasms Urinary dysfunction Sexual dysfunction Erectile dysfunction |
| title | An Overview of Patient-reported Outcomes for Men with Prostate Cancer: Results from the PIONEER Consortium |
| title_full | An Overview of Patient-reported Outcomes for Men with Prostate Cancer: Results from the PIONEER Consortium |
| title_fullStr | An Overview of Patient-reported Outcomes for Men with Prostate Cancer: Results from the PIONEER Consortium |
| title_full_unstemmed | An Overview of Patient-reported Outcomes for Men with Prostate Cancer: Results from the PIONEER Consortium |
| title_short | An Overview of Patient-reported Outcomes for Men with Prostate Cancer: Results from the PIONEER Consortium |
| title_sort | overview of patient reported outcomes for men with prostate cancer results from the pioneer consortium |
| topic | Big data Patient-reported outcome Prostatic neoplasms Urinary dysfunction Sexual dysfunction Erectile dysfunction |
| url | http://www.sciencedirect.com/science/article/pii/S2666168324014320 |
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