Journal of Genetic Counseling

, Volume 18, Issue 3, pp 229–238 | Cite as

Pancreatic Cancer Surveillance Among High-Risk Populations: Knowledge and Intent

Original Research

Abstract

Pancreatic cancer is the fourth most common cancer in both men and women in the United States. It has the lowest survival rate of all cancers, largely due to the presence of non-specific symptoms, leading to diagnosis at advanced stages. While the majority of cases of pancreatic cancer are sporadic, up to 10% may be associated with an inherited predisposition. Currently, there is no standard screening protocol for pancreatic cancer, although this will change in the future as technology improves. Additionally, there is little information regarding the perceptions and intent to screen for pancreatic cancer among those with an increased risk due to a hereditary cancer predisposition syndrome, which was the objective of this study. Focus groups and individual telephone interviews were conducted, with questions focused on knowledge about pancreatic cancer and screening, perceived motivators, and perceived barriers related to each of the screening techniques currently available. Participants were recruited from the High Risk Breast Cancer and Pancreatic Cancer Registries at Huntsman Cancer Institute. The findings of this study indicated that individuals from these high-risk groups have low knowledge levels of pancreatic cancer screening, despite their desire for this information. Motivation to undergo a particular screening technique is related to whether the test is recommended by a physician, cost, degree of invasiveness, and comfort level. This information is useful to genetics professionals who counsel at-risk individuals, physicians who formulate patient care plans, and translational researchers who are developing pancreatic screening methods.

Keywords

Pancreatic cancer Pancreatic cancer screening Screening uptake Motivators Barriers The Health Belief Model 

Notes

Acknowledgements

This manuscript is based on a research project conducted by Zoe Lewis to fulfill the requirements of the University of Utah Master’s Degree in Genetic Counseling. Financial support was provided by a grant from the Huntsman Cancer Institute Pancreatic Cancer Research Program; the Huntsman Cancer Foundation, which funds the genetic counseling core at Huntsman Cancer Institute; and a grant from the University of Utah Graduate Program in Genetic Counseling. The authors would like to thank the following individuals for their contributions to this study: Tom Conner, Nicole Oman, and Elynn Beck for their assistance in recruiting study participants; Emogene Grundvig for assisting with the focus groups; and Heidi Slack for assisting with transcription.

Conflict of Interest

The authors indicate no potential conflicts of interest.

References

  1. Aiken, L. S., West, S. G., Woodward, C. K., & Reno, R. R. (1994). Health beliefs and compliance with mammography-screening recommendations in asymptomatic women. Health Psychology, 13(2), 122. doi: 10.1037/0278-6133.13.2.122.PubMedCrossRefGoogle Scholar
  2. Bartsch, D. K., Sina-Frey, M., Lang, S., Wild, A., Gerdes, B., Barth, P., et al. (2002). Cdkn2a germline mutations in familial pancreatic cancer. Annals of Surgery, 236(6), 730–737. doi: 10.1097/00000658-200212000-00005.PubMedCrossRefGoogle Scholar
  3. Borg, A., Sandberg, T., Nilsson, K., Johannsson, O., Klinker, M., Masback, A., et al. (2000). High frequency of multiple melanomas and breast and pancreas carcinomas in cdkn2a mutation-positive melanoma families. Journal of the National Cancer Institute, 92(15), 1260–1266. doi: 10.1093/jnci/92.15.1260.PubMedCrossRefGoogle Scholar
  4. Brand, R. E., & Lynch, H. T. (2004). Identification of high-risk pancreatic cancer-prone families. Gastroenterology Clinics of North America, 33(4), 907–918. doi: 10.1016/j.gtc.2004.07.011.PubMedCrossRefGoogle Scholar
  5. Brand, R., & Mahr, C. (2005). Risk factors for pancreatic adenocarcinoma: Are we ready for screening and surveillance? Current Gastroenterology Reports, 7(2), 122–127. doi: 10.1007/s11894-005-0050-9.PubMedCrossRefGoogle Scholar
  6. Brand, R. E., Lerch, M. M., Rubinstein, W. S., Neoptolemos, J. P., Whitcomb, D. C., Hruban, R. H., et al. (2007). Advances in counselling and surveillance of patients at risk for pancreatic cancer. Gut, 56(10), 1460–1469. doi: 10.1136/gut.2006.108456.PubMedCrossRefGoogle Scholar
  7. Brentnall, T. A. (2005). Management strategies for patients with hereditary pancreatic cancer. Current Treatment Options in Oncology, 6(5), 437–445. doi: 10.1007/s11864-005-0046-6.PubMedCrossRefGoogle Scholar
  8. Brentnall, T. A., Bronner, M. P., Byrd, D. R., Haggitt, R. C., & Kimmey, M. B. (1999). Early diagnosis and treatment of pancreatic dysplasia in patients with a family history of pancreatic cancer. Annals of Internal Medicine, 131(4), 247–255.PubMedGoogle Scholar
  9. Canto, M. I. (2008). Screening and surveillance approaches in familial pancreatic cancer. Gastrointestinal Endoscopy Clinics of North America, 18(3), 535–553 xdoi: 10.1016/j.giec.2008.05.012.PubMedCrossRefGoogle Scholar
  10. Canto, M. I., Goggins, M., Yeo, C. J., Griffin, C., Axilbund, J. E., Brune, K., et al. (2004). Screening for pancreatic neoplasia in high-risk individuals: An eus-based approach. Clinical Gastroenterology and Hepatology, 2(7), 606–621. doi: 10.1016/S1542-3565(04)00244-7.PubMedCrossRefGoogle Scholar
  11. Canto, M. I., Goggins, M., Hruban, R. H., Petersen, G. M., Giardiello, F. M., Yeo, C., et al. (2006). Screening for early pancreatic neoplasia in high-risk individuals: A prospective controlled study. Clinical Gastroenterology and Hepatology, 4(6), 766–781 quiz 665doi: 10.1016/j.cgh.2006.02.005.PubMedCrossRefGoogle Scholar
  12. Carmel, S., Shani, E., & Rosenberg, L. (1994). The role of age and an expanded health belief model in predicting skin cancer protective behavior. Health Education Research, 9(4), 433–447. doi: 10.1093/her/9.4.433.PubMedCrossRefGoogle Scholar
  13. Champion, V. L. (1993). Instrument refinement for breast cancer screening behaviors. Nursing Research, 42(3), 139. doi: 10.1097/00006199-199305000-00003.PubMedCrossRefGoogle Scholar
  14. Champion, V. L., & Miller, T. (1996). Predicting mammography utilization through model generation. Psychology Health and Medicine, 1(3), 273. doi: 10.1080/13548509608402224.CrossRefGoogle Scholar
  15. Conlon, K. C., Klimstra, D. S., & Brennan, M. F. (1996). Long-term survival after curative resection for pancreatic ductal adenocarcinoma. Clinicopathologic analysis of 5-year survivors. Annals of Surgery, 223(3), 273–279. doi: 10.1097/00000658-199603000-00007.PubMedCrossRefGoogle Scholar
  16. Consortium, B. C. L. (1999). Cancer risks in brca2 mutation carriers.The breast cancer linkage consortium. Journal of the National Cancer Institute, 91(15), 1310–1316. doi: 10.1093/jnci/91.15.1310.CrossRefGoogle Scholar
  17. Couch, F. J., Johnson, M. R., Rabe, K. G., Brune, K., de Andrade, M., Goggins, M., et al. (2007). The prevalence of brca2 mutations in familial pancreatic cancer. Cancer Epidemiology, Biomarkers & Prevention, 16(2), 342–346. doi: 10.1158/1055-9965.EPI-06-0783.CrossRefGoogle Scholar
  18. Cwik, G., Wallner, G., Skoczylas, T., Ciechanski, A., & Zinkiewicz, K. (2006). Cancer antigens 19-9 and 125 in the differential diagnosis of pancreatic mass lesions. Archives of surgery (Chicago, Ill.), 141(10), 968–973 discussion 974.Google Scholar
  19. De Angelis, C., Repici, A., Carucci, P., Bruno, M., Goss, M., Mezzabotta, L., et al. (2007). Pancreatic cancer imaging: The new role of endoscopic ultrasound. JOP, 8(1, Suppl), 85–97.PubMedGoogle Scholar
  20. Eberle, M. A., Pfutzer, R., Pogue-Geile, K. L., Bronner, M. P., Crispin, D., Kimmey, M. B., et al. (2002). A new susceptibility locus for autosomal dominant pancreatic cancer maps to chromosome 4q32-34. American Journal of Human Genetics, 70(4), 1044–1048. doi: 10.1086/339692.PubMedCrossRefGoogle Scholar
  21. Fischera, S. D., & Frank, D. I. (1994). The health belief model as a predictor of mammography screening. Health Values: The Journal of Health Behavior. Education and Promotion, 18(4), 3.Google Scholar
  22. Frebourg, T., Bercoff, E., Manchon, N., Senant, J., Basuyau, J. P., Breton, P., et al. (1988). The evaluation of ca 19-9 antigen level in the early detection of pancreatic cancer. A prospective study of 866 patients. Cancer, 62(11), 2287–2290 doi: 10.1002/1097-0142(19881201)62:11<2287::AID-CNCR2820621103>3.0.CO;2-H.PubMedCrossRefGoogle Scholar
  23. Giardiello, F. M., Brensinger, J. D., Tersmette, A. C., Goodman, S. N., Petersen, G. M., Booker, S. V., et al. (2000). Very high risk of cancer in familial peutz-jeghers syndrome. Gastroenterology, 119(6), 1447–1453. doi: 10.1053/gast.2000.20228.PubMedCrossRefGoogle Scholar
  24. Goldstein, A. M., Fraser, M. C., Struewing, J. P., Hussussian, C. J., Ranade, K., Zametkin, D. P., et al. (1995). Increased risk of pancreatic cancer in melanoma-prone kindreds with p16ink4 mutations. The New England Journal of Medicine, 333(15), 970–974. doi: 10.1056/NEJM199510123331504.PubMedCrossRefGoogle Scholar
  25. Hahn, S. A., Greenhalf, B., Ellis, I., Sina-Frey, M., Rieder, H., Korte, B., et al. (2003). Brca2 germline mutations in familial pancreatic carcinoma. Journal of the National Cancer Institute, 95(3), 214–221.PubMedCrossRefGoogle Scholar
  26. Han, S. S., Jang, J. Y., Kim, S. W., Kim, W. H., Lee, K. U., & Park, Y. H. (2006). Analysis of long-term survivors after surgical resection for pancreatic cancer. Pancreas, 32(3), 271–275. doi: 10.1097/01.mpa.0000202953.87740.93.PubMedCrossRefGoogle Scholar
  27. Hruban, R. H., Petersen, G. M., Ha, P. K., & Kern, S. E. (1998). Genetics of pancreatic cancer. From genes to families. Surgical Oncology Clinics of North America, 7(1), 1–23.PubMedGoogle Scholar
  28. Hruban, R. H., Canto, M. I., Griffin, C., Kern, S. E., Klein, A. P., Laheru, D., et al. (2005). Treatment of familial pancreatic cancer and its precursors. Current Treatment Options in Gastroenterology, 8(5), 365–375. doi: 10.1007/s11938-005-0039-3.PubMedCrossRefGoogle Scholar
  29. Huang, J. J., Yeo, C. J., Sohn, T. A., Lillemoe, K. D., Sauter, P. K., Coleman, J., et al. (2000). Quality of life and outcomes after pancreaticoduodenectomy. Annals of Surgery, 231(6), 890–898. doi: 10.1097/00000658-200006000-00014.PubMedCrossRefGoogle Scholar
  30. Jemal, A., Siegel, R., Ward, E., Murray, T., Xu, J., & Thun, M. J. (2007). Cancer statistics, 2007. CA: a Cancer Journal for Clinicians, 57(1), 43–66.CrossRefGoogle Scholar
  31. Klapman, J., & Malafa, M. P. (2008). Early detection of pancreatic cancer: Why, who, and how to screen. Cancer Control, 15(4), 280–287.PubMedGoogle Scholar
  32. Klein, D. A. (2002). Using the health belief model as a framework for predicting adherence to colorectal cancer screening: A study of women undergoing routine mammography. ProQuest Information and Learning.Google Scholar
  33. Klein, A. P., Brune, K. A., Petersen, G. M., Goggins, M., Tersmette, A. C., Offerhaus, G. J., et al. (2004). Prospective risk of pancreatic cancer in familial pancreatic cancer kindreds. Cancer Research, 64(7), 2634–2638. doi: 10.1158/0008-5472.CAN-03-3823.PubMedCrossRefGoogle Scholar
  34. Lasser, K. E., Ayanian, J. Z., Fletcher, R. H., & Good, M. J. (2008). Barriers to colorectal cancer screening in community health centers: A qualitative study. BMC Family Practice, 9, 15. doi: 10.1186/1471-2296-9-15.PubMedCrossRefGoogle Scholar
  35. Locker, G. Y., Hamilton, S., Harris, J., Jessup, J. M., Kemeny, N., Macdonald, J. S., et al. (2006). Asco 2006 update of recommendations for the use of tumor markers in gastrointestinal cancer. Journal of Clinical Oncology, 24(33), 5313–5327. doi: 10.1200/JCO.2006.08.2644.PubMedCrossRefGoogle Scholar
  36. Lynch, H. T., Smyrk, T., Kern, S. E., Hruban, R. H., Lightdale, C. J., Lemon, S. J., et al. (1996). Familial pancreatic cancer: A review. Seminars in Oncology, 23(2), 251–275.PubMedGoogle Scholar
  37. McCarthy, M. J., Evans, J., Sagar, G., & Neoptolemos, J. P. (1998). Prediction of resectability of pancreatic malignancy by computed tomography. British Journal of Surgery, 85(3), 320–325. doi: 10.1046/j.1365-2168.1998.00584.x.PubMedCrossRefGoogle Scholar
  38. Moon, H. J., An, J. Y., Heo, J. S., Choi, S. H., Joh, J. W., & Kim, Y. I. (2006). Predicting survival after surgical resection for pancreatic ductal adenocarcinoma. Pancreas, 32(1), 37–43. doi: 10.1097/01.mpa.0000194609.24606.4b.PubMedCrossRefGoogle Scholar
  39. Murphy, K. M., Brune, K. A., Griffin, C., Sollenberger, J. E., Petersen, G. M., Bansal, R., et al. (2002). Evaluation of candidate genes map2k4, madh4, acvr1b, and brca2 in familial pancreatic cancer: Deleterious brca2 mutations in 17%. Cancer Research, 62(13), 3789–3793.PubMedGoogle Scholar
  40. Pogue-Geile, K. L., Chen, R., Bronner, M. P., Crnogorac-Jurcevic, T., Moyes, K. W., Dowen, S., et al. (2006). Palladin mutation causes familial pancreatic cancer and suggests a new cancer mechanism. PLoS Medicine, 3(12), e516. doi: 10.1371/journal.pmed.0030516.PubMedCrossRefGoogle Scholar
  41. Ries, L., Harkins, D., Krapcho, M., Mariotto, A., Miller, B., Feuer, E., et al.(2006). Seer cancer statistics review, 1975–2003. Retrieved May, 2007, from http://seer.cancer.gov/csr/1975_2003/.
  42. Rimer, B. K., Keintz, M. K., Kessler, H. B., Engstrom, P. F., & Rosan, J. R. (1989). Why women resist screening mammography: Patient-related barriers. Radiology, 172(1), 243–246.PubMedGoogle Scholar
  43. Rosenberg, L., Wise, L. A., Palmer, J. R., Horton, N. J., & Adams-Campbell, L. L. (2005). A multilevel study of socioeconomic predictors of regular mammography use among african-american women. Cancer Epidemiology, Biomarkers & Prevention, 14(11 Pt 1), 2628–2633. doi: 10.1158/1055-9965.EPI-05-0441.CrossRefGoogle Scholar
  44. Rulyak, S. J., & Brentnall, T. A. (2004). Inherited pancreatic cancer: Improvements in our understanding of genetics and screening. The International Journal of Biochemistry & Cell Biology, 36(8), 1386–1392. doi: 10.1016/j.biocel.2004.02.010.CrossRefGoogle Scholar
  45. Savage, S. A., & Clarke, V. A. (1996). Factors associated with screening mammography and breast self-examination intentions. Health Education Research, 11(4), 409. doi: 10.1093/her/11.4.409-a.PubMedCrossRefGoogle Scholar
  46. Soriano, A., Castells, A., Ayuso, C., Ayuso, J. R., de Caralt, M. T., Gines, M. A., et al. (2004). Preoperative staging and tumor resectability assessment of pancreatic cancer: Prospective study comparing endoscopic ultrasonography, helical computed tomography, magnetic resonance imaging, and angiography. The American Journal of Gastroenterology, 99(3), 492–501. doi: 10.1111/j.1572-0241.2004.04087.x.PubMedCrossRefGoogle Scholar
  47. Tersmette, A. C., Petersen, G. M., Offerhaus, G. J., Falatko, F. C., Brune, K. A., Goggins, M., et al. (2001). Increased risk of incident pancreatic cancer among first-degree relatives of patients with familial pancreatic cancer. Clinical Cancer Research, 7(3), 738–744.PubMedGoogle Scholar
  48. Vasen, H. F., Gruis, N. A., Frants, R. R., van Der Velden, P. A., Hille, E. T., & Bergman, W. (2000). Risk of developing pancreatic cancer in families with familial atypical multiple mole melanoma associated with a specific 19 deletion of p16 (p16-leiden). International Journal of Cancer, 87(6), 809–811 doi: 10.1002/1097-0215(20000915)87:6<809::AID-IJC8>3.0.CO;2-U.CrossRefGoogle Scholar
  49. Yeo, C. J., & Cameron, J. L. (1998). Prognostic factors in ductal pancreatic cancer. Langenbeck’s Archives of Surgery, 383(2), 129–133.PubMedCrossRefGoogle Scholar
  50. Yoshizawa, K., Nagai, H., Kurihara, K., Sata, N., Kawai, T., & Saito, K. (2001). Long-term survival after surgical resection for pancreatic cancer. Hepato-Gastroenterology, 48(40), 1153–1156.PubMedGoogle Scholar
  51. Zervos, E. E., Tanner, S. M., Osborne, D. A., Bloomston, M., Rosemurgy, A. S., Ellison, E. C., et al. (2006). Differential gene expression in patients genetically predisposed to pancreatic cancer. The Journal of Surgical Research, 135(2), 317–322. doi: 10.1016/j.jss.2006.03.022.PubMedCrossRefGoogle Scholar
  52. Zheng, Y. F., Saito, T., Takahashi, M., Ishibashi, T., & Kai, I. (2006). Factors associated with intentions to adhere to colorectal cancer screening follow-up exams. BMC Public Health, 6, 272. doi: 10.1186/1471-2458-6-272.PubMedCrossRefGoogle Scholar
  53. Zimmerman, R. K., Tabbarah, M., Trauth, J., Nowalk, M. P., & Ricci, E. M. (2006). Predictors of lower endoscopy use among patients at three inner-city neighborhood health centers. Journal of Urban Health, 83(2), 221–230. doi: 10.1007/s11524-005-9028-z.PubMedCrossRefGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2009

Authors and Affiliations

  • Zoe K. Lewis
    • 1
    • 3
    • 4
  • Caren J. Frost
    • 2
  • Vickie L. Venne
    • 1
  1. 1.Huntsman Cancer InstituteUniversity of UtahSalt LakeUSA
  2. 2.CSW Social Research Institute, College of Social WorkUniversity of UtahSalt LakeUSA
  3. 3.College of Human GeneticsUniversity of UtahSalt LakeUSA
  4. 4.Salt LakeUSA

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