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Hereditary Cancer in Clinical Practice

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Open Access 01-12-2018 | Research

German National Case Collection for familial pancreatic Cancer (FaPaCa) - acceptance and psychological aspects of a pancreatic cancer screening program

Authors: Frederike S. Franke, Elvira Matthäi, Emily P. Slater, Christoph Schicker, Johannes Kruse, Detlef K. Bartsch

Published in: Hereditary Cancer in Clinical Practice | Issue 1/2018

Abstract

Background

Pancreatic cancer screening is recommended to individuals at risk (IAR) of familial pancreatic cancer (FPC) families, but little is known about the acceptance of such screening programs. Thus, the acceptance and psychological aspects of a controlled FPC screening program was evaluated.

Methods

IAR of FPC families underwent comprehensive counseling by a geneticist and pancreatologist prior to the proposed screening. Participating IAR, IAR who discontinued screening and IAR who never participated in the screening program were invited to complete questionnaires to assess the motivation for participating in surveillance, cancer worries, structural distress and experiences with participation. Questionnaires were completed anonymously to receive most accurate answers.

Results

Of 286 IAR to whom pancreatic ductal adenocarcinoma (PDAC) screening was recommended, 139 (48.6%) IAR regularly participated (group 1), 49 (17.1%) IAR (group 2) discontinued screening after median 1 (1–10) screening visits and 98 (34.2%) IAR (group 3) never underwent screening. The overall response rate of questionnaires was 67% (189/286) with rates of 100% (139 of 139 IAR), 49% (29 of 49 IAR) and 23.4% (23 of 98 IAR) for groups 1, 2 and 3, respectively. At least 93% of IAR felt adequately informed about the screening program after initial counseling. However, only 38.8% received knowledge of or the recommendation for PDAC screening by physicians. The reported cancer-related distress and the fear of investigations were highest in group 1, but acceptably low in all three groups. The main reasons to discontinue or not to participate in screening were the time efforts and travel costs (groups 2 and 3 48,7%).

Conclusion

Less than 50% of IAR regularly participate in a proposed PDAC screening program, although the associated psychological burden is quite low. Physicians should be educated about high risk PDAC groups and screening recommendations. Time and travel efforts must be reduced to encourage more IAR to participate in a recommended screening.

Warshaw AL, Fernandez-del Castillo C. Pancreatic carcinoma. N Engl J Med. 1992;326:455–65. https://doi.org/10.1056/NEJM199202133260706.CrossRefPubMed

Cooperman AM. Pancreatic cancer: the bigger picture. Surg Clin North Am. 2001;81:557–74.CrossRef

Brand RE, Lerch MM, Rubinstein WS, et al. Advances in counselling and surveillance of patients at risk for pancreatic cancer. Gut. 2007;56:1460–9. https://doi.org/10.1136/gut.2006.108456.CrossRefPubMedPubMedCentral

Hemminki K, Li X. Familial and second primary pancreatic cancers: a nationwide epidemiologic study from Sweden. Int J Cancer. 2003;103:525–30. https://doi.org/10.1002/ijc.10863.CrossRefPubMed

Bartsch DK, Kress R, Sina-Frey M, et al. Prevalence of familial pancreatic cancer in Germany. Int J Cancer. 2004;110:902–6. https://doi.org/10.1002/ijc.20210.CrossRefPubMed

Klein AP, Brune KA, Petersen GM, et al. Prospective risk of pancreatic cancer in familial pancreatic cancer kindreds. Cancer Res. 2004;64:2634–8.CrossRef

Applebaum SE, Kant JA, Whitcomb DC, Ellis IH. Genetic testing. Counseling, laboratory, and regulatory issues and the EUROPAC protocol for ethical research in multicenter studies of inherited pancreatic diseases. Med Clin North Am. 2000;84:575–88 viii.CrossRef

Hruban RH, Petersen GM, Goggins M, et al. Familial pancreatic cancer. Ann Oncol. 1999;10(Suppl 4):69–73.CrossRef

Bartsch DK, Sina-Frey M, Ziegler A, et al. Update of familial pancreatic cancer in Germany. Pancreatology. 2001;1:510–6. https://doi.org/10.1159/000055853.CrossRefPubMed

10.

Schneider R, Slater EP, Sina M, et al. German national case collection for familial pancreatic cancer (FaPaCa): ten years experience. Familial Cancer. 2011;10:323–30. https://doi.org/10.1007/s10689-010-9414-x.CrossRefPubMed

11.

Bartsch DK, Gress TM, Langer P. Familial pancreatic cancer--current knowledge. Nat Rev Gastroenterol Hepatol. 2012;9:445–53. https://doi.org/10.1038/nrgastro.2012.111.CrossRefPubMed

12.

Bussom S, Saif MW. Methods and rationale for the early detection of pancreatic cancer. Highlights from the “2010 ASCO gastrointestinal cancers symposium”. Orlando, FL, USA. January 22-24, 2010. JOP. 2010;11:128–30.PubMed

13.

Kimmey MB, Bronner MP, Byrd DR, Brentnall TA. Screening and surveillance for hereditary pancreatic cancer. Gastrointest Endosc. 2002;56:S82–6.CrossRef

14.

Poley JW, Kluijt I, Gouma DJ, et al. The yield of first-time endoscopic ultrasonography in screening individuals at a high risk of developing pancreatic cancer. Am J Gastroenterol. 2009;104:2175–81. https://doi.org/10.1038/ajg.2009.276.CrossRefPubMed

15.

Verna EC, Hwang C, Stevens PD, et al. Pancreatic cancer screening in a prospective cohort of high-risk patients: a comprehensive strategy of imaging and genetics. Clin Cancer Res. 2010;16:5028–37. https://doi.org/10.1158/1078-0432.CCR-09-3209.CrossRefPubMed

16.

Rulyak SJ, Brentnall TA. Inherited pancreatic cancer: surveillance and treatment strategies for affected families. Pancreatology. 2001;1:477–85. https://doi.org/10.1159/000055851.CrossRefPubMed

17.

Canto MI, Goggins M, Yeo CJ, et al. Screening for pancreatic neoplasia in high-risk individuals: an EUS-based approach. Clin Gastroenterol Hepatol. 2004;2:606–21.CrossRef

18.

Canto MI, Goggins M, Hruban RH, et al. Screening for early pancreatic neoplasia in high-risk individuals: a prospective controlled study. Clin Gastroenterol Hepatol. 2006;4:766–81; quiz 665. https://doi.org/10.1016/j.cgh.2006.02.005.CrossRefPubMed

19.

Bartsch DK, Slater EP, Carrato A, et al. Refinement of screening for familial pancreatic cancer. Gut. 2016;3:1–8. https://doi.org/10.1136/gutjnl-2015-311098.CrossRef

20.

Vasen H, Ibrahim I, Ponce CG, et al (2017) Bene fi t of surveillance for pancreatic Cancer in high-risk Individuals : outcome of long-term prospective follow-up studies from three European expert centers. doi: https://doi.org/10.1200/JCO.2015.64.0730.CrossRef

21.

Canto MI, Hruban RH, Fishman EK, et al. Frequent detection of pancreatic lesions in asymptomatic high-risk individuals. Gastroenterology. 2012;142:795–6. https://doi.org/10.1053/j.gastro.2012.01.005.CrossRef

22.

Ludwig E, Olson SH, Bayuga S, et al. Feasibility and yield of screening in relatives from familial pancreatic cancer families. Am J Gastroenterol. 2011;106:946–54. https://doi.org/10.1038/ajg.2011.65.CrossRefPubMedPubMedCentral

23.

Langer P, Slater E, Fendrich V, et al. Familial pancreatic cancer: current status. Expert Opin Med Diagn. 2007;1:193–201. https://doi.org/10.1517/17530059.1.2.193.CrossRefPubMed

24.

Wardle J, Williamson S, Sutton S, et al. Psychological impact of colorectal cancer screening. Health Psychol. 2003;22:54–9.CrossRef

25.

Tyndel S, Austoker J, Henderson BJ, et al. What is the psychological impact of mammographic screening on younger women with a family history of breast cancer? Findings from a prospective cohort study by the PIMMS management group. J Clin Oncol. 2007;25:3823–30. https://doi.org/10.1200/JCO.2007.11.0437.CrossRefPubMed

26.

Watson EK, Henderson BJ, Brett J, et al. The psychological impact of mammographic screening on women with a family history of breast cancer--a systematic review. Psychooncology. 2005;14:939–48. https://doi.org/10.1002/pon.903.CrossRefPubMed

27.

Andersen MR, Drescher CW, Zheng Y, et al. Changes in cancer worry associated with participation in ovarian cancer screening. Psychooncology. 2007;16:814–20. https://doi.org/10.1002/pon.1151.CrossRefPubMed

28.

Bish A, Sutton S, Jacobs C, et al. Changes in psychological distress after cancer genetic counselling: a comparison of affected and unaffected women. Br J Cancer. 2002;86:43–50. https://doi.org/10.1038/sj.bjc.6600030.CrossRefPubMedPubMedCentral

29.

Harinck F, Nagtegaal T, Kluijt I, et al. Feasibility of a pancreatic cancer surveillance program from a psychological point of view. Genet Med. 2011;13:1015–24. https://doi.org/10.1097/GIM.0b013e31822934f5.CrossRefPubMed

30.

Konings IC, Sidharta GN, Harinck F, et al. Repeated participation in pancreatic cancer surveillance by high-risk individuals imposes low psychological burden. Psychooncology. 2015. https://doi.org/10.1002/pon.4047.

31.

Maheu C, Vodermaier A, Rothenmund H, et al. Pancreatic cancer risk counselling and screening: impact on perceived risk and psychological functioning. Familial Cancer. 2010;9:617–24. https://doi.org/10.1007/s10689-010-9354-5.CrossRefPubMed

32.

Gopie JP, Vasen HF, Tibben A. Surveillance for hereditary cancer: does the benefit outweigh the psychological burden?--a systematic review. Crit Rev Oncol Hematol. 2012;83:329–40. https://doi.org/10.1016/j.critrevonc.2012.01.004.CrossRefPubMed

33.

Hart SL, Torbit LA, Crangle CJ, et al. Moderators of cancer-related distress and worry after a pancreatic cancer genetic counseling and screening intervention. Psychooncology. 2012;21:1324–30. https://doi.org/10.1002/pon.2026.CrossRefPubMed

34.

Fendrich V, Langer P, Bartsch DK. Familial pancreatic cancer--status quo. Int J Color Dis. 2014;29:139–45. https://doi.org/10.1007/s00384-013-1760-3.CrossRef

35.

Canto MI, Harinck F, Hruban RH, et al (2013) International Cancer of the Pancreas Screening ( CAPS ) Consortium summit on the management of patients with increased risk for familial pancreatic cancer. 339–347. doi: https://doi.org/10.1136/gutjnl-2012-303108.

36.

Slater EP, Langer P, Niemczyk E, et al. PALB2 mutations in European familial pancreatic cancer families. Clin Genet. 2010;78:490–4. https://doi.org/10.1111/j.1399-0004.2010.01425.x.CrossRefPubMed

37.

Slater EP, Langer P, Fendrich V, et al. Prevalence of BRCA2 and CDKN2a mutations in German familial pancreatic cancer families. Familial Cancer. 2010;9:335–43. https://doi.org/10.1007/s10689-010-9329-6.CrossRefPubMed

38.

Langer P, Kann PH, Fendrich V, et al (2009) Five years of prospective screening of high-risk individuals from families with familial pancreatic cancer. 1410–1418. doi: https://doi.org/10.1136/gut.2008.171611.

39.

Konings ICAW, Harinck F, Kuenen MA. Factors associated with cancer worries in individuals participating in annual pancreatic cancer surveillance. Familial Cancer. 2016. https://doi.org/10.1007/s10689-016-9930-4.

40.

Joergensen MT, Gerdes A-M, Sorensen J, et al. Is screening for pancreatic cancer in high-risk groups cost-effective? – experience from a Danish national screening program. Pancreatology. 2016;16:584–92. https://doi.org/10.1016/j.pan.2016.03.013.CrossRefPubMed

41.

Breitkopf CR, Sinicrope PS, Rabe KG, et al. Factors influencing receptivity to future screening options for pancreatic cancer in those with and without pancreatic cancer family history. Hered Cancer Clin Pract. 2012:1–9.

42.

Al-sukhni W, Borgida A, Rothenmund H, et al. Screening for pancreatic Cancer in a high-risk Cohort : an eight-year experience. Gastrointest Surg. 2012:771–83. https://doi.org/10.1007/s11605-011-1781-6.

43.

Lewis ZK, Frost CJ, Venne VL. Pancreatic cancer surveillance among high-risk populations: knowledge and intent. J Genet Couns. 2009;18:229–38. https://doi.org/10.1007/s10897-008-9205-9.CrossRefPubMed

44.

Perloff LS, Fetzer BK. Self–other judgments and perceived vulnerability to victimization. J Pers Soc Psychol. 1986;50:502–10.CrossRef

Title: German National Case Collection for familial pancreatic Cancer (FaPaCa) - acceptance and psychological aspects of a pancreatic cancer screening program
Authors: Frederike S. Franke
Elvira Matthäi
Emily P. Slater
Christoph Schicker
Johannes Kruse
Detlef K. Bartsch
Publication date: 01-12-2018
Publisher: BioMed Central
Published in: Hereditary Cancer in Clinical Practice / Issue 1/2018
Electronic ISSN: 1897-4287
DOI: https://doi.org/10.1186/s13053-018-0100-6

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