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Casey Lipton
 Pancreatic Ductal Adenocarcinoma one of the least
  treatable forms of Cancer
 Only 8% of people diagnosed diagnosed in early

  stages when surgical removal of tumor is possible
 One-year survival rate for patients with stages

  three and four Pancreatic Adenocarcinoma 26%
  and five-year survival rate 6%
 Five-year survival rate for patients with stage one

  or stage two Pancreatic Adenocarcinoma 23%
 Male, African American patients, Jewish patients,
  patients between 60 and 80, patients with
  diabetes and patients who smoke
 Ten percent of cases due to hereditary conditions

    ◦ Peutz-Jegher’s Syndrome, Hereditary Nonpolyposis
      Colorectal Cancer, BRCA 1/2 mutations, Familial Atypical
      Multiple Mole Melanoma Syndrome, Familial
      Pancreatitis
   No standard screening protocol, but tests that pick
    up precancerous legions (i.e. EUS, MRI, CT scans)


   Health History questionnaires, Doctor’s Charts
    and Genetic Counselors used to obtain
    demographic information and family history of
    cancer
 Evaluate health history questionnaires, genetic
  counselor pedigrees and doctors’ charts to
  develop a system to classify patients into risk
  groups for early diagnosis
 Focuses on higher and lower risk patients as
  opposed to just higher risk patients
 Genetic counselor provides more accurate
  demographic information and personal and
  familial histories of cancer
 Health history questionnaire provides more
  detailed on demographic information
 Some patients thought to be in lower or higher
  risk groups should be placed in different risk
  groups based on questionnaires, doctor’s charts
  and genetic counselor risk assessments
 Patients from Columbia Presbyterian Hospital
 Prevention group (considered higher risk) taken

  from Pancreas Center Prevention and Genetics
  Program
 Surgical Patients visited Columbia Presbyterian

  for surgery for Pancreatic Cancer
 Patients excluded from either group if they did not

  have health history questionnaire, doctor’s chart
  or genetic counselor pedigree (Prevention
  Patients)
 Completed   by all patients with
 demographic information, personal
 and first, second and third degree
 relatives histories of cancer
 Completed by prevention patients with
 mainly personal and family histories of
 cancer
 Filled
       out by physicians or medical
 assistants for all patients with basic
 demographic information
   Average Risk: 1 family member with pancreatic cancer
    who >55 years old or no family members with pancreatic
    cancer

   Moderate Risk: 2+ first, second, or third degree relatives
    with pancreatic cancer or 1 first-degree relative with
    pancreatic cancer <55 years old

   High Risk: 3+ first, second, or third degree relatives with
    pancreatic cancer, 2+ first-degree relatives with pancreatic
    cancer or 1 first and one second degree relative with
    pancreatic cancer <55 years old
   Based on Pancreatic Cancer Screening in a Prospective Cohort of High-Risk Patients: A
    Comprehensive Strategy of Imaging and Genetics
   Surgical Patients: compared demographic information
    from HHQ and Chart
   Prevention Patients: compared demographic
    information from HHQ, chart and genetic counselor
    pedigree
   Prevention Patients: compared personal and family
    histories of cancer from HHQ and genetic counselor
    pedigree using kappa statistical test
   Risk category of each patient determined based on
    HHQ and genetic counselor pedigree
   Amount and clarity of information analyzed to find
    most effective way to classify patients
   61 Pancreas Prevention Patients had HHQ,
    Genetic Counselor and Chart data available, 33
    female patients

   252 Surgical Patients had HHQ and Chart data
    available, 112 female
   Kappa values between 0.4672 and 1.000 for personal
    history of cancer in Prevention Program group
   Kappa values between 0.7005 and 1.000 for first degree
    relatives histories of cancer in Prevention Program group
   Kappa values between 0.312 and 0.8924 for second
    degree relatives histories of cancer in Prevention
    Program group
   Kappa values between -0.0526 and 0.7248 for third
    degree relatives histories of cancer in Prevention
    Program group
 22 high-risk patients, 19 moderate-risk patients,
  20 average-risk patients in Prevention Program as
  recorded by GC
 18 high-risk patients, 18 moderate-risk patients,

  25 average-risk patients in Prevention Program as
  recorded by HHQ
 3 high-risk patients, 15 moderate-risk patients,

  234 average-risk patients in Surgical group as
  recorded by HHQ
 HHQ, GC and Chart reported similar data for age,
  race, religion, smoking, diabetes,
 HHQ asked most specific demographic questions,

  so little demographic information missing from
  Prevention and Surgical Patients
 Demographic information left out of genetic

  counselor pedigrees and doctor’s charts because
  they record less biographical information
 Higher level of agreement (higher kappa values)
  for personal history of cancer and first degree
  relatives’ histories of cancer
 Lower level of agreement (lower kappa values) for

  second degree relatives’ histories of cancer and
  third degree relatives’ histories of cancer
 Many more second and third degree relatives

  reported by GC
 18 surgical patients who should have been placed
  in moderate or high-risk groups based on family
  histories
 Genetic counselor provides more detailed
  information on family histories
 Sending all patients to genetic counselor neither
  time nor cost efficient
 HHQ with more specific family history questions
  as an intermediary step before genetic counselor
  meetings
   1. Admehin Jamel (2011, 10 28). American cancer society. Retrieved from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-029771.pdf
   2. Palliative care: Easing the course of serious illness - MayoClinic.com. (n.d.). Mayo Clinic. Retrieved July 1, 2012, from http://www.mayoclinic.com/health/palliative-care/MY01051
   3. Risk Factors For Pancreas Cancer. (n.d.). Johns Hopkins Pathology. Retrieved August 12, 2012, from http://pathology.jhu.edu/pc/BasicRisk.php?area=ba
   4. Klein AP, Hruban RH, Brune KA, Petersen GM, Goggins M. Familial pancreatic cancer. Cancer J 2001;7:266-73.
   5. Screening for Pancreatic Cancer. (n.d.). U.S. Preventive Services Task Force. Retrieved August 12, 2012, from http://www.uspreventiveservicestaskforce.org/uspstf/uspspanc.htm
   6. 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. Clinical Cancer Res.
    2010;16(20):5028-37.5
   7. Canto MI, Hruban RH, Fishman EK, et al. Frequent detection of pancreatic lesions in asymptomatic high-risk individuals. Gastroenterology. 2012;142(4):796-804.
   8. Chalmers, K. I., Luker, K. A., Leinster, S. J., Ellis, I., & Booth, K. (2001). Information and support needs of women with primary relatives with breast cancer: development of the information and support
    needs questionnaire. Journal of Advanced Nursing, 35(4), 497-507. Doi:10.1046/j.1365-2648.2001.01866.x.
   9. Ziogas, A., & Anton-Culver, H. (2003). Validation of family history data in cancer family registries. American Journal of Preventive Medicine, 24(2), 190-198. Doi:10.1016/S0749-3797(02) 005930- 7.
   10. Vasen HF, Möslein G, Alonso A, et al. Recommendations to improve identification of hereditary and familial colorectal cancer in Europe. Fam Cancer. 2010;9(2):109-15.
   11. Schofield L, Goldblatt J, Iacopetta B. Challenges in the diagnosis and management of Lynch Syndrome in an Indigenous family living in a remote West Australian community. Rural Remote Health.
    2011;11(4):1836.
   12. Hallowell, N., Murton, F., Statham, H., Green, J. M., & Richards, M. P. (1997). Women’s need for information before attending genetic counseling for familial breast or ovarian cancer: a questionnaire,
    interview, and observational study. BMJ (Clinical Research Ed), 281, 7076-283.
   13. Armel, S. R., McCuaig, J., Finch, A., Densky, R., Panzarella, T., Murphy, J., et al. (2009). The effectiveness of family history questionnaire in cancer genetic counseling. Journal of Genetic Counseling,
    18(4), 366-378.
   14. Armel SR, Hitchman K, Millar K, et al. The use of family history questionnaires: an examination of genetic risk estimates and genetic testing eligibility in the non-responder population. J Genet Couns.
    2011;20(4):355-64.
   15. Armel SR, Mccuaig J, Finch A, et al. The effectiveness of family history questionnaires in cancer genetic counseling. J Genet Couns. 2009;18(4):366-78.
   16. Ferrante JM, Ohman-strickland P, Hahn KA, et al. Self-report versus medical records for assessing cancer-preventive services delivery. Cancer Epidemiol Biomarkers Prev. 2008;17(11):2987-94.
   17. Fleiss JL, Cohen J, Everitt BS. Large sample standard errors of kappa and weighted kappa. Psychol. Bull. 1969;72:323

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Pancreatic Cancer Risk Classification System Based on Health History Questionnaires

  • 2.  Pancreatic Ductal Adenocarcinoma one of the least treatable forms of Cancer  Only 8% of people diagnosed diagnosed in early stages when surgical removal of tumor is possible  One-year survival rate for patients with stages three and four Pancreatic Adenocarcinoma 26% and five-year survival rate 6%  Five-year survival rate for patients with stage one or stage two Pancreatic Adenocarcinoma 23%
  • 3.  Male, African American patients, Jewish patients, patients between 60 and 80, patients with diabetes and patients who smoke  Ten percent of cases due to hereditary conditions ◦ Peutz-Jegher’s Syndrome, Hereditary Nonpolyposis Colorectal Cancer, BRCA 1/2 mutations, Familial Atypical Multiple Mole Melanoma Syndrome, Familial Pancreatitis
  • 4. No standard screening protocol, but tests that pick up precancerous legions (i.e. EUS, MRI, CT scans)  Health History questionnaires, Doctor’s Charts and Genetic Counselors used to obtain demographic information and family history of cancer
  • 5.  Evaluate health history questionnaires, genetic counselor pedigrees and doctors’ charts to develop a system to classify patients into risk groups for early diagnosis  Focuses on higher and lower risk patients as opposed to just higher risk patients
  • 6.  Genetic counselor provides more accurate demographic information and personal and familial histories of cancer  Health history questionnaire provides more detailed on demographic information  Some patients thought to be in lower or higher risk groups should be placed in different risk groups based on questionnaires, doctor’s charts and genetic counselor risk assessments
  • 7.  Patients from Columbia Presbyterian Hospital  Prevention group (considered higher risk) taken from Pancreas Center Prevention and Genetics Program  Surgical Patients visited Columbia Presbyterian for surgery for Pancreatic Cancer  Patients excluded from either group if they did not have health history questionnaire, doctor’s chart or genetic counselor pedigree (Prevention Patients)
  • 8.  Completed by all patients with demographic information, personal and first, second and third degree relatives histories of cancer
  • 9.  Completed by prevention patients with mainly personal and family histories of cancer
  • 10.  Filled out by physicians or medical assistants for all patients with basic demographic information
  • 11. Average Risk: 1 family member with pancreatic cancer who >55 years old or no family members with pancreatic cancer  Moderate Risk: 2+ first, second, or third degree relatives with pancreatic cancer or 1 first-degree relative with pancreatic cancer <55 years old  High Risk: 3+ first, second, or third degree relatives with pancreatic cancer, 2+ first-degree relatives with pancreatic cancer or 1 first and one second degree relative with pancreatic cancer <55 years old  Based on Pancreatic Cancer Screening in a Prospective Cohort of High-Risk Patients: A Comprehensive Strategy of Imaging and Genetics
  • 12. Surgical Patients: compared demographic information from HHQ and Chart  Prevention Patients: compared demographic information from HHQ, chart and genetic counselor pedigree  Prevention Patients: compared personal and family histories of cancer from HHQ and genetic counselor pedigree using kappa statistical test  Risk category of each patient determined based on HHQ and genetic counselor pedigree  Amount and clarity of information analyzed to find most effective way to classify patients
  • 13.
  • 14. 61 Pancreas Prevention Patients had HHQ, Genetic Counselor and Chart data available, 33 female patients  252 Surgical Patients had HHQ and Chart data available, 112 female
  • 15.
  • 16. Kappa values between 0.4672 and 1.000 for personal history of cancer in Prevention Program group  Kappa values between 0.7005 and 1.000 for first degree relatives histories of cancer in Prevention Program group  Kappa values between 0.312 and 0.8924 for second degree relatives histories of cancer in Prevention Program group  Kappa values between -0.0526 and 0.7248 for third degree relatives histories of cancer in Prevention Program group
  • 17.
  • 18.  22 high-risk patients, 19 moderate-risk patients, 20 average-risk patients in Prevention Program as recorded by GC  18 high-risk patients, 18 moderate-risk patients, 25 average-risk patients in Prevention Program as recorded by HHQ  3 high-risk patients, 15 moderate-risk patients, 234 average-risk patients in Surgical group as recorded by HHQ
  • 19.  HHQ, GC and Chart reported similar data for age, race, religion, smoking, diabetes,  HHQ asked most specific demographic questions, so little demographic information missing from Prevention and Surgical Patients  Demographic information left out of genetic counselor pedigrees and doctor’s charts because they record less biographical information
  • 20.  Higher level of agreement (higher kappa values) for personal history of cancer and first degree relatives’ histories of cancer  Lower level of agreement (lower kappa values) for second degree relatives’ histories of cancer and third degree relatives’ histories of cancer  Many more second and third degree relatives reported by GC
  • 21.  18 surgical patients who should have been placed in moderate or high-risk groups based on family histories  Genetic counselor provides more detailed information on family histories  Sending all patients to genetic counselor neither time nor cost efficient  HHQ with more specific family history questions as an intermediary step before genetic counselor meetings
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