A Pilot Study on Colorectal Cancer Screening Knowledge and Awareness of Din Navajo People on Din Bik yah Navajoland

1. A Pilot Study on Colorectal Cancer Screening Knowledge and Awareness of Diné (Navajo People) on Diné Bikéyah (Navajoland)  CPC Grand Rounds Priscilla Sanderson, Ph.D., CRC Research Associate Arizona Cancer Center

2. Specific Aim To assess colorectal cancer screening, knowledge, and attitudes in Navajo adults residing on the Navajo Reservation.

3. Presentation Outline Justification Colorectal Cancer Facts Navajo Facts and Demographics Background and Significance Study Areas - Fair Survey - Hospital Survey - Focus Groups Summary and Conclusions

4. Justification Prior to this study, there was no information regarding Navajo’s knowledge and beliefs for the following questions: What do Navajo people think causes cancer or colorectal cancer (CRC)? Have they ever heard of CRC or colon cancer? Do they think CRC can be treated? Have they heard of CRC screening? Is there resistance to talk about CRC or cancer? Is there resistance to screening or to pursue early detection?

5. Colorectal Cancer Facts People age 50 years and older are susceptible. 90% of cases occur in people age 50 years and older. Regular screening can prolong life. The risk increases with age. It is the 2nd leading cause of death in the U.S. It is largely preventable.

6. Screening Screening means checking your body for the signs or symptoms of cancer. The routine performance of screening tests may find many kinds of cancer early, when treatment is likely to work best.

7. Screening Test Options

8. Navajo Facts and Demographics Navajo/other tribal affiliation 276,775 Navajo/race-in-combination 309,575 Resides on the Navajo Reservation boundaries 173,987 Age: Under age 18 39% 18-64 56% 65 and older 5% Median age 24 Language spoken at home: Speak Non-English at home 44% Educational Attainment: Less than high school graduate 37%

9. AI/AN and NHW incidence rates, colorectal cancer, both sexes, by region, 1999-2004 CRC is higher in AI/AN in Alaska and the plains regions. We don’t know why. Speculation around smoking which has been associated with an increased risk of developing or dying from colorectal cancer and of being diagnosed at an earlier age. Also speculation about mounting evidence of an association between Type 2 diabetes and colorectal cancer. What role does diet play?`CRC is higher in AI/AN in Alaska and the plains regions. We don’t know why. Speculation around smoking which has been associated with an increased risk of developing or dying from colorectal cancer and of being diagnosed at an earlier age. Also speculation about mounting evidence of an association between Type 2 diabetes and colorectal cancer. What role does diet play?`

10. Background and Significance Cancer is currently the second leading cause of death among American Indians and is the leading cause of death among Alaska Natives*. Although incidence among the AI/AN population is lower than other races, diagnoses occurs at a later stage, contributing to higher rates of mortality. IHS reports a total age-adjusted CRC mortality rate of 11.8 deaths per 100,000 people*.

11. Background and Significance 23% of the Navajo population is 45 years old and older, compared to 34% for the U.S. population. The number of Navajo people reaching the age bracket for CRC will increase substantially in coming years. Between the 1990 and 2000 census, there was a 41% increase in the number of Navajo persons aged 64 years and older, compared to 16% for the U.S. population.

12. Study Area

13. Fair Survey (n=303) Anonymous assessment < 3 minute survey 8 True/False CRC knowledge screening questions Two Navajo Nation fairs on the reservation. AZCC fair booth AZCC materials No recruitment English/Navajo language Convenience sample - Navajo men and women who are 18 years or older.

14. Fair Survey Demographic (n=303) Age Category 40-49 27% Sex (F) 78% Education High school/ GED 26% Tribe Navajo 94% Daily Language Spoken Bilingual 72% Self-Rated Health Good 39%

15. Fair Survey Heard of “colon or colorectal cancer - Yes 75% - No 25% Participants 50 years and older who had a colon cancer test. - Yes 27% (31) - No 73% (82)

16. Fair Survey: Frequency of Knowledge Scores 

17. Fair Survey: Frequency of Knowledge Scores

18. Tests on Demographic and Heard/Not Heard of CRC

19. Tests on Demographic and Heard/Not Heard of CRC

20. Tests on Demographic and Screened/Not Screened for CRC

21. Tests on Demographic and Screened/Not Screened for CRC

22. Tests on Demographic and Scores of CRC Knowledge

23. Tests on Demographic and Scores of CRC Knowledge

24. Fair Survey Highlights 1. Females were significantly more likely to have heard about colorectal cancer. 2. Participants with more education were significantly more likely to have heard about colorectal cancer. 3. Participants who were 50 years and older with more education were significantly more likely to be screened for colorectal cancer. 4. Participants who heard about colorectal cancer were much more likely not be screened.

25. Hospital Survey One-on-one personal interviews with an interviewer who asked questions and recorded responses. Interviews were 27 minutes. The questionnaire was tested at two IHS outpatient lobbies. Recruitment flyers and posters placed in hospital lobbies. Criteria: Navajo men and women age 40 years and older who reside on the Navajo Reservation. $10 gas card.

26. Hospital Survey Demographics (n=20) Age Category 50-59 45% Mean age 58 (SD 7.75) Sex (F) 55% Education High school/GED 35% Some college/Junior College 35% Tribe Navajo 100% Marital Status Married 55% State live in Arizona 95%

27. Hospital Themes The participants had a general lack of knowledge regarding cancer and colon cancer among the respondents. The participants’ perceived that cancer and colon cancer leads to death. The respondents thought that health behaviors could prevent cancer or colon cancer, i.e., regular screening, healthy diet, daily exercises, avoiding alcohol and drugs, seeing doctors regularly, and following traditional beliefs. Traditional beliefs were associated with thinking that lightning causes cancer and that it is bad luck to think or talk about cancer.

28. Hospital Interviews Who is at risk for colon cancer? Response: Both men and women (95%) Can colon cancer be cured? Response: Something (90%) can be done to cure a person once they get colon cancer.

29. Hospital Interviews Prevention Response: Yes (90%) people will be healthy, if they live a healthy lifestyle. Knowledge about screening 1. Ever heard of something called a “cancer screening test” Response: Yes (50%) 2. Age a person is supposed to get his/her first colon cancer screening test. Response: Ranged from 20 to 45 (65%)

30. Hospital Interviews Experience with screening 1. Ever had a colon cancer screening test: Yes (n=7 [35%]) 2. Kind of colon cancer screening had: Digital Rectal Exam Yes (n=5 [71%]) FOBT Yes (n=5 [71%]) Colonoscopy Yes (n=5 [71%]) 3. Anyone ever suggested a colon cancer screening: No (60%)

31. Hospital Interviews Interest or willingness to be screened 1. Want a colon cancer screening. Decided yes (65%) 2. Would agree to a colon cancer screening if doctor recommended it. Yes (95%) 3. Now aware of colon cancer screening, will ask their doctor for one. Yes (85%) 4. Plan to get a colon cancer screening. Yes (95%)

32. Hospital Highlights General lack of knowledge on age of colorectal cancer screening. Half of the participants never heard of colorectal cancer. If a doctor recommended a colorectal cancer screening, 95% said they would do it. After the interview, 95% planned to get a colorectal cancer screening.

33. Focus Group Methodology Required approvals to conduct research. Four focus groups in four communities. 10 questions regarding cancer and CRC screening. Recruitment flyers. Audio-taped and note-taking. Informational brochures and brief seminar. Debriefing meeting. $25 Basha’s grocery card. $10 gas card.

34. Focus Group Methodology Discussions were guided by questions. All Navajo facilitators and note-takers spoke Navajo. All tapes were transcribed verbatim. Transcripts were reviewed independently by two Navajo translators. Three-way consensus agreement between interviewers* Independent review for patterns Consensus on themes that emerged

35. Focus Groups Behavior Preference to speak in the Navajo language. Focus groups started 1 hour late. Focus groups ran from 3 to 5 hours. Willingness to talk throughout the focus group. Seriously took their role. Roles reversed to teach traditional views, concepts, and herbs to research team. “My children…” or “You may be related to me…”

36. Focus Groups (n=30)Thirty, “yes” [Navajo]. Cancer is a…a disease.  Age Age range: 43 to 93 Mean age 71 (SD10.5) Sex (F) 77% Education No education 37% Tribe Navajo 100% Daily Language Bilingual 53% General health is: Good 53%

37. Focus Groups Have you had a colon or colorectal test? Age: 50 to 93 (n=29) Yes 41% (12) No 52% (15) Don’t know 7% ( 2) Age: 43 to 93 (n=30) Yes 43% (13) No 50% (15) Don’t know 7% ( 2)

38. Focus Group Themes Q1: What is cancer? Theme: A sore that does not heal Q2: What causes cancer? Themes: Contamination, i.e., environment (food, water, animals, mutton) with violation of traditional values (multiple sex partners, lightning association). Inappropriate interaction between human behavior and the environment.

39. Focus Group Themes Q3: Which body parts are most likely to develop cancer? Theme: You can get cancer anywhere, internal and/or external. Q4: What types of cancer screening are being done? Theme: Preventive and diagnostic tools.

40. Focus Group Themes Q5: Is there screening for colorectal cancer? Theme: The participants were fairly knowledgeable. Q6: How do people know they have colorectal cancer? Theme: Focus on possible symptoms and go through formal diagnosis because they suspect something.

41. Focus Group Themes Q7: How is this type of cancer treated? Theme: Western and Navajo medicine. Q8: Who gets colon cancer? Theme: Vulnerable populations who are exposed to contamination with violation of traditional values, and who succumb to these negative forces.

42. Focus Group Themes Q9: Can this type of cancer be treated successfully? Theme: Optimistic with positive responses that it can be treated successfully by Navajo and Western medicine. Q10: How can this type of cancer be prevented? Theme: Knowledge of good health promotion and prevention messages from minimum to maximum.

43. Focus Group Highlights 53% of the participants age 50-93 have not had a colorectal cancer screening. Majority had no education. Cancer is a sore that does not heal. Causes of cancer is due to contamination and violation of traditional values. Cancer can be treated by Western medicine and Navajo medicine. American Indian investigators as PI strengthens data gathering, recruitment, and trust to help improve community needs/issues.

44. Summary and Conclusions Low awareness of CRC and CRC screening with less than a high school education. Female heard more often about CRC and CRC screening. Participants had a great interest in learning more about CRC and CRC screening.

45. Summary and Conclusions The proportion of CRC screening is much lower than the national average. The greatest need for CRC screening efforts is among participants with lower education levels. It is difficult to assess participants’ understanding of cancer.

46. Why is this work important?   First documentation of Navajo elders discussing cancer, colorectal cancer, and screening on their homeland and in their language. Participants’ willingness to be screened, if an opportunity arises by provider recommendations. A great need for early detection and prevention in the Navajo and English language.

47. Limitations Sample size (N=353). Interviews limited to Navajo participants residing on the Navajo Reservation. Resources required for tribal community research is expensive, i.e., cancellation of 3 focus groups. Remote, rural geographic locations.

48. Need of Future Research Further qualitative research to gather data on cancer knowledge and cancer screening among American Indians residing on and off reservations. There is a great need to understand cultural thoughts and beliefs to develop culturally-sensitive educational materials on screening. Qualitative data will help public health policy makers and leaders address low cancer screening and lack of cancer knowledge. Research information is essential for designing effective screening programs.

49. Acknowledgements Maria Elena Martinez Nicolette Teufel-Shone Neil Weinstein Jennie R. Joe Tom Becker Margaret Lee Carol Goldtooth-Begay Kathleen Frank Sophina Manheimer Sally Joe Lydia Hubbard-Pourier Evelyn Watchman Mae-Gilene Begay Lorraine Kelwood Sherry Brown Carmelita Sorrelman Joquetta Degroat Al Henderson Tincer Nez Johnny Johnson Thomas Drouhard Joseph Engelken Franklin Freeland David Espey Donald Haverkamp Frederick Sherman Sylvia Brown Lisa Hess Crystal Espinoza Yuda Chongpison R25 Cancer Prevention and Control Training Program Native American Cancer Research Partnership, Louise Canfield, Jani Ingram Navajo Nation Human Research and Review Board Western Navajo Agency Council Fort Defiance Agency Council Northern Navajo Agency Council Chinle Agency Council Indian Health Service Health Boards Navajo participants, especially focus group participants.