No Difference in Colorectal Cancer Incidence or Stage at Detection by Colonoscopy Among 3 Countries With Different Lynch Syndrome Surveillance Policies

German HNPCC Consortium, Dutch Lynch Syndrome, Finnish Lynch Syndrome Registry, Christoph Engel*, Hans F. Vasen, Toni Seppala, Stefan Aretz, Marloes Bigirwamungu-Bargeman, Sybrand Y. de Boer, Karolin Bucksch, Reinhard Buttner, Elke Holinski-Feder, Stefanie Holzapfel, Robert Hueneburg, Maarten A. J. M. Jacobs, Heikki Jarvinen, Matthias Kloor, Magnus von Knebel Doeberitz, Jan J. Koornstra, Mariette van KouwenAlexandra M. Langers, Paul C. van de Meeberg, Monika Morak, Gabriela Moeslein, Fokko M. Nagengast, Kirsi Pylvanainen, Nils Rahner, Laura Renkonen-Sinisalo, Silvia Sanduleanu, Hans K. Schackert, Wolff Schmiegel, Karsten Schulmann, Verena Steinke-Lange, Christian P. Strassburg, Juda Vecht, Marie-Louise Verhulst, Wouter de Vos Tot Nederveen Cappel, Silke Zachariae, Jukka-Pekka Mecklin, Markus Loeffler

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

65 Citations (Scopus)


BACKGROUND & AIMS: Patients with Lynch syndrome are at high risk for developing colorectal cancer (CRC). Regular colonoscopic surveillance is recommended, but there is no international consensus on the appropriate interval. We investigated whether shorter intervals are associated with lower CRC incidence and detection at earlier stages by comparing the surveillance policies in Germany, which evaluates patients by colonoscopy annually, in the Netherlands (patients evaluated at 1-2-year intervals), and Finland (patients evaluated at 2-3-year intervals). METHODS: We collected data from 16,327 colonoscopic examinations (conducted from 1984 through 2015) of 2747 patients with Lynch syndrome (pathogenic variants in the MLH1, MSH2, or MSH6 genes) from the German HNPCC Consortium, the Dutch Lynch Syndrome Registry, and the Finnish Lynch Syndrome Registry. Our analysis included 23,309 person-years of cumulative observation time. Time from the index colonoscopy to incident CRC or adenoma was analyzed using the Kaplan-Meier method; groups were compared using the log-rank test. We performed multivariable Cox regression analyses to identify factors associated with CRC risk (diagnosis of CRC before the index colonoscopy, sex, mutation, age, and presence of adenoma at the index colonoscopy). RESULTS: The 10-year cumulative CRC incidence ranged from 4.1% to 18.4% in patients with low-and high-risk profiles, respectively, and varied with age, sex, mutation, and prior detection of CRC or adenoma. Observed colonoscopy intervals were largely in accordance with the country-specific recommendations. We found no significant differences in cumulative CRC incidence or CRC stage at detection among countries. There was no significant association between CRC stage and


time since last colonoscopy. CONCLUSIONS: We did not find a significant reduction in CRC incidence or stage of detection in Germany (annual colonoscopic surveillance) than in countries with longer surveillance intervals (the Netherlands, with 1-2-year intervals, and Finland, with 2-3-year intervals). Overall, we did not find a significant association of the interval with CRC risk, although age, sex, mutation, and prior neoplasia were used to individually modify colonoscopy intervals. Studies are needed to develop and validate risk-adapted surveillance strategies and to identify patients who benefit from shorter surveillance intervals.

Original languageEnglish
Pages (from-to)1400-+
Number of pages12
Issue number5
Publication statusPublished - Nov-2018


  • Genetic Risk Factor
  • Interval
  • Hereditary Colon Cancer
  • Tumor

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