Top 10 research priorities in colorectal cancer: results from the Colorectal Cancer Priority-Setting Partnership
Rosa Klotz, Magdalena Holze, Colette Dörr-Harim, Erich Grohmann, Barbara Nied, Burkhard Lebert, Susanne Weg‐Remers, Claudia Lutz, Karin Meißler, Patrick D. Schloss, Charlotte Ullrich, Susanne Frankenhauser, Heidi Lutter, Diedrich Bühler, Azaz Ahmed, Toto Gronlund, André L. Mihaljević, for the Forschungspartnerschaft Darmkrebs (www.forschungspartnerschaft.de), André L. Mihaljević, Rosa Klotz, Colette Dörr-Harim, Steering Group Forschungspartnerschaft Darmkrebs/Priority Setting Colorectal Cancer, Diedrich Bühler, Colette Dörr-Harim, Susanne Frankenhauser, Sylvia Gapp-Frasch, Erich Grohmann, Volker Helmstädter, C Y Hey, Werner Hey, Rosa Klotz, André L. Mihaljević, Burkhard Lebert, Claudia Lutz, Heidi Lutter, Claudia Lutz, Karin Meißler, Barbara Nied, Patrick D. Schloss, Susanne Stegmüller, Peter Stünzi, Angelika Trabold-Hauk, Charlotte Ullrich, Susanne Weg‐Remers, Michel Wensing
Abstract
BACKGROUND: Colorectal cancer (CRC) is the third most frequent cause of cancer death in the word. Which aspects of research into CRC should be accorded the highest priority remains unclear, because relevant stakeholders, such as patients, nurses, and physicians, played hardly any part in the development of research projects. The goal in forming the CRC Priority-Setting Partnership (PSP) was to bring all relevant stakeholders together to identify and prioritize unresolved research questions regarding the diagnosis, treatment, and follow-up of CRC. METHODS: The CRC PSP worked in cooperation with the British James Lind Alliance. An initial nationwide survey was conducted, and evidence uncertainties were collected, categorized, summarized, and compared with available evidence from the literature. The as-yet unresolved questions were (provisionally) ranked in a second national wide survey, and at a concluding consensus workshop all stakeholders came together to finalize the rankings in a nominal group process and compile a top 10 list. RESULTS: In the first survey (34% patients, 51% healthcare professionals, 15% unknown), 1102 submissions were made. After exclusion of duplicates and previously resolved questions, 66 topics were then ranked in the second survey (56% patients, 39% healthcare professionals, 5% unknown). This interim ranking process revealed distinct differences between relatives and healthcare professionals. The final top 10 list compiled at the consensus workshop covers a wide area of research topics. CONCLUSION: All relevant stakeholders in the CRC PSP worked together to identify and prioritize the top 10 evidence uncertainties. The results give researchers and funding bodies the opportunity to address the most patient-relevant research projects. It is the first detailed description of a PSP in Germany, and the first PSP on CRC care worldwide.