1. Survivorship Data in Prostate Cancer: Where Are We and Where Do We Need To Be?
- Author
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Beth Russell, Katharina Beyer, Ailbhe Lawlor, Monique J. Roobol, Lionne D.F. Venderbos, Sebastiaan Remmers, Erik Briers, Sara J. MacLennan, Steven MacLennan, Muhammad Imran Omar, Mieke Van Hemelrijck, Emma Smith, James N'Dow, Karin Plass, Maria Ribal, Nicolas Mottet, Robert Shepherd, Tom Abbott, Ken Mastris, Lisa Moris, Michael Lardas, Thomas Van den Broeck, Peter-Paul Willemse, Nicola Fossati, Karl Pang, Riccardo Campi, Isabella Greco, Mauro Gacci, Sergio Serni, Anders Bjartell, Ragnar Lonnerbro, Alberto Briganti, Daniele Crosti, Roberto Garzonio, Giorgio Gandaglia, Martina Faticoni, Grant office, Chris Bangma, Maria Jongerden, Derya Tilki, Anssi Auvinen, Teemu Murtola, Tapio Visakorpi, Kirsi Talala, Teuvo Tammela, Aino Siltari, Stephane Lejeune, Laurence Colette, Simona Caputova, Delielena Poli, Sophie Byrne, Luz Fialho, Ashley Rowland, Neo Tapela, Nicola Di Flora, Kathi Apostolidis, Valerie Lemair, Bertrand De Meulder, Charles Auffray, Nesrine Taibi, Ayman Hijazy, Albert Saporta, Kai Sun, Shaun Power, Nazanin Zounemat Kermani, Kees van Bochove, Azadeh Tafreshiha, Chiara Bernini, Denis Horgan, Louise Fullwood, Marc Holtorf, Doron Lancet, Gabi Bernstein, Sheela Tripathee, Manfred Wirth, Michael Froehner, Beate Brenner, Angelika Borkowetz, Christian Thomas, Friedemann Horn, Kristin Reiche, Markus Kreuz, Andreas Josefsson, Delila Gasi Tandefelt, Jonas Hugosson, Jack Schalken, Henkjan Huisman, Thomas Hofmarcher, Peter Lindgren, Emelie Andersson, Adam Fridhammar, Monica Tames Grijalva, Susan Evans-Axelsson, Frank Verholen, Jihong Zong, John-Edward Butler-Ransohoff, Todd Williamson, Reg Waldeck, Amanda Bruno, Ekaterina Nevedomskaya, Samuel Fatoba, Niculae Constantinovici, Carl Steinbeisser, Monika Maass, Patrizia Torremante, Emmanuelle Dochy, Federica Pisa, Marc Dietrich Voss, Kishore Papineni, Jing Wang-silvanto, Robert Snijder, Xuewei Wang, Mark Lambrecht, Russ Wolfinger, Sherinne Eid, Soundarya Palanisamy, Samiul Haque, Laurent Antoni, Angela Servan, Katie Pascoe, Paul Robinson, Joana Lencart, Bertrand Jaton, Heidi Turunen, Olavi Kilkku, Pasi Pohjanjousi, Olli Voima, Liina Nevalaita, Keijo Punakivi, Sarah Seager, Shilpa Ratwani, Katarzyna Grzeslak, James Brash, Elaine Longden-Chapman, Danny Burke, Muriel Licour, Sarah Payne, Alan Yong, Flavia Lujan, Sophia Le Mare, Jan Hendrich, Michael Bussmann, Juckeland, Kotik, and Christian Reich
- Subjects
Cancer survivorship ,Prostate cancer ,Quality of life ,Patient-reported outcome measures ,Diseases of the genitourinary system. Urology ,RC870-923 ,Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,RC254-282 - Abstract
Cancer survivorship was recently identified as a prostate cancer (PCa) research priority by PIONEER, a European network of excellence for big data in PCa. Despite being a research priority, cancer survivorship lacks a clear and agreed definition, and there is a distinct paucity of patient-reported outcome (PRO) data available on the subject. Data collection on cancer survivorship depends on the availability and implementation of (validated) routinely collected patient-reported outcome measures (PROMs). There have been recent advances in the availability of such PROMs. For instance, the European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) is developing survivorship questionnaires. This provides an excellent first step in improving the data available on cancer survivorship. However, we propose that an agreed, standardised definition of (prostate) cancer survivorship must first be established. Only then can real-world data on survivorship be collected to strengthen our knowledge base. With more men than ever surviving PCa, this type of research is imperative to ensure that the quality of life of these men is considered as much as their quantity of life. Patient summary: As there are more prostate cancer survivors than ever before, research into cancer survivorship is crucial. We highlight the importance of such research and provide recommendations on how to carry it out. The first step should be establishing agreement on a standardised definition of survivorship. From this, patient-reported outcome measures can then be used to collect important survivorship data.
- Published
- 2024
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