1. Reducing inequalities in cancer survival for Ontario First Nations: From surveillance to action Loraine Marrett, Diane Nishri, Amanda Sheppard, Anna Chiarelli, Alethea Kewayosh Prevention & Cancer Control, Cancer Care Ontario Canadian Public Health Association Meeting May 29, 2014

2. Objectives 2 To outline disparities in cancer burden, especially survival, in registered First Nations in Ontario To demonstrate the trajectory from surveillance data to research to cancer control action

3. Outline Aboriginal people in Ontario Cancer burden in Registered First Nations in Ontario Explaining disparities in survival Moving from knowledge to action Going forward 3

4. Aboriginal People in Ontario In Canada, 1,400,685 Aboriginal people (~4% of total population) First Nations (FN): 851,560 (60%) Métis: 451,795 (32%) Inuit: 59,445 (4%) Collectively referred to as ‘FNIM’ Ontario has 201,100 (21.5%) of Canada’s First Nations people 62% are “Registered” as Indians under the Indian Act About 50% live on reserve Statistics Canada. 2011 National Household Survey. http://www12.statcan.gc.ca/nhs-enm/2011/as-sa/99-011-x/99-011-x2011001-eng.cfm 4

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6. Outline Aboriginal people in Ontario Surveillance: Cancer burden in Registered First Nations in Ontario Explaining disparities in survival for one cancer Moving from knowledge to action Going forward 6

7. What do we know about cancer burden in Ontario’s FN population? Population-wide estimates of cancer burden in Ontario typically come from the Ontario Cancer Registry (OCR) The OCR records data on cancer diagnoses for all Ontarians, 1964-2010 All cases are followed up for vital status and date of death, so survival times from diagnosis can be calculated Cannot routinely estimate cancer burden for ethnic/racial subgroups, including FNIM Race/ethnicity not systematically recorded in administrative health records upon which the OCR is based 7

8. Indian Registry System 1968-1991 Ontario Cancer Registry 1968-2001 Ontario Mortality Database 1968-2006 Cancer burden in Registered First Nations in Ontario: Methods The ‘Indian Registry System’ (IRS) is maintained by Aboriginal Affairs & Northern Development Canada (AANDC) 140,000 Registered First Nations (1968-91) Used probabilistic record linkage to link IRS, OCR and Ontario mortality file 8

9. All cancer incidence, Ontario, 1968-2001, ages 15-74 Females Age-standardized rate/100,000 Year of diagnosis Rates age-standardized to the 1991 Canadian population. Horizontal bars around First Nations rates indicate 95% confidence limits. Source: Marrett & Chaudhry, Cancer Causes Control 2003; Marrett et al. unpublished data. 1968- 1975 1984- 1991 1992- 1996 1997- 2001 1976- 1983 Males 1976- 1983 1968- 1975 1984- 1991 1992- 1996 1997- 2001 First Nations All Ontario Year of diagnosis Historically lower cancer incidence rates Incidence rates rose faster than in Ontario as a whole

10. Colorectal cancer incidence, Ontario, 1968-2001, ages 15-74 Age-standardized rate/100,000 Females Year of diagnosis 1968- 1975 1984- 1991 1992- 1996 1997- 2001 1976- 1983 Males 1976- 1983 1968- 1975 1984- 1991 1992- 1996 1997- 2001 Rates age-standardized to the 1991 Canadian population Horizontal bars around First Nations rates indicate 95% confidence limits Source: Marrett & Chaudhry, Cancer Causes Control 2003; Marrett et al. unpublished data. First Nations All Ontario Year of diagnosis

11. Lung cancer incidence, Ontario, 1968-2001, ages 15-74 Age-standardized rate/100,000 Females Year of diagnosis 1968- 1975 1984- 1991 1992- 1996 1997- 2001 1976- 1983 Males 1976- 1983 1968- 1975 1984- 1991 1992- 1996 1997- 2001 Rates age-standardized to the 1991 Canadian population Horizontal bars around First Nations rates indicate 95% confidence limits Source: Marrett & Chaudhry, Cancer Causes Control 2003; Marrett et al. unpublished data. First Nations All Ontario Year of diagnosis High smoking rates in off- and especially on-reserve FN

12. Five-year age-standardized observed survival (%) by cancer site and sex comparing the First Nations population to other Ontarians for cancers diagnosed between 1992-2001 with follow-up to December 31 st, 2007 and censoring at age 75. Source: Nishri, Sheppard, Withrow & Marrett. Int J Cancer (in press) 5-year Cancer Survival in Registered First Nations vs Other Ontarians, 1992-2001 Survival significantly poorer for all cancers except female lung cancer

13. Outline Aboriginal people in Ontario Cancer burden in Registered First Nations in Ontario Research: Explaining disparities in survival Moving from knowledge to action Going forward 13

14. Purpose: To further examine survival disparity between Ontario FN and non-FN women diagnosed with breast cancer between 1995- 2004 Reviewed charts for stage and other important prognostic factors (comorbidity, treatment, smoking, etc) not in the OCR 14

15. Key findings FN women 50% more likely to be diagnosed at stages II+ % with appropriate treatment-for-stage and -age same Only stage 1 survival worse for FN women More comorbidity, especially diabetes, in FN women explained this No other prognostic factors significantly different Caveats Full assessment of impact of distance not possible since matched on cancer centre No data on socioeconomic status Only breast cancer 15

16. Outline Aboriginal people in Ontario Cancer survival in Registered First Nations in Ontario Explaining disparities in survival Cancer control: Moving from knowledge to action Going forward 16

17. Aboriginal Cancer Strategy (ACS II) 2012-15 Cancer Care Ontario’s roadmap to address FNIM cancer control needs in Ontario Led by CCO’s Aboriginal Cancer Control Unit ACS III is under development Vision “To improve the performance of the cancer system with and for FNIM peoples in Ontario in a way that honours the Aboriginal Path of Well-being” “The ACS II sets out a clear plan for reducing risk & preventing cancer…”

18. ACS II: Strategic Priorities 18

19. Outline Aboriginal people in Ontario Cancer burden in Registered First Nations in Ontario Explaining disparities in survival Moving from knowledge to action Going forward…more to be done… 19

20. Updating and completing the picture: continuing surveillance Linkage of Indian Registry System 1991-present & Ontario Cancer Registry to estimate current cancer burden (collaboration with the Chiefs of Ontario and ICES) Access data from linking 1991 Canadian Census (long form) and the Canadian Cancer Registry to estimate cancer burden in FN and Métis, nationally (and large provinces) Novel ways to identify non-Status FN, Métis and Inuit are necessary in order to complete the FNIM picture 20

21. Conclusions Having cancer surveillance data for Ontario FN was foundational to establishing the strategic priorities and specific priority activities and securing funding to implement ACSI I focuses on both system level change as well as programmatic activities Ongoing surveillance and research is important to monitor and understand changes and to assess and adjust strategy 21

22. Thank you! Questions? 22 Loraine.marrett@cancercare.on.ca

23. Does stage at diagnosis explain difference in survival? TNM StageFirst Nations women n (%) Non-FN women n (%) Adjusted OR* (95% CI) Stage I95 (34)284 (44)1.00 Stage II130 (46)244 (38) 1.55 (1.16-2.08) Stage III and IV 58 (20)122 (19) Unstageable4 (<1)21 (<1) 23 * Adjusted for age of diagnosis, period of diagnosis and cancer centre FN: First Nations Sheppard AJ, Chiarelli AM, Marrett LD, Mirea L, Nishri ED, Trudeau ME. 2010. Detection of later stage breast cancer in First Nations women in Ontario, Canada. Can J Public Health. FN women were more likely than non FN women to be diagnosed with more advanced breast cancer (p<0.01)

24. Prognostic factors that do not differ between FN and non-FN women 24 Estrogen/progesterone receptor status First Nations women n (%) Non-FN women n (%) Neither positive132 (46)342 (51) Either positive155 (54)329 (49) p>0.05 No significant differences FN: First Nations Sheppard AJ, Chiarelli AM, Marrett LD, Nishri ED, Trudeau ME. 2011. Stage at diagnosis and comorbidity influence breast cancer survival in First Nations women in Ontario, Canada. Cancer Epidemiology, Biomarkers & Prevention. 2011. Stage- and age- appropriate treatment First Nations women n (%) Non-FN women n (%) No68 (24)146 (22) Yes215 (76)504 (78) Unknown4 (<1)21 (<1)

25. Prevalence of comorbidities, in particular diabetes, does differ between FN and non- FN women 25 Any comorbidityFirst Nations women n (%) Non-FN women n (%) No180 (64)534 (82) Other35 (12)72 (11) Diabetes67 (24)46 (7) Unknown5 (<1)19 (<1) Significantly different, P<0.01 FN: First Nations Sheppard AJ, Chiarelli AM, Marrett LD, Nishri ED, Trudeau ME. 2011. Stage at diagnosis and comorbidity influence breast cancer survival in First Nations women in Ontario, Canada. Cancer Epidemiology, Biomarkers & Prevention. 2011.

26. Percentage of Current Smokers in Ontario, Aged 20+, 2007-2011 Non-traditional Tobacco Use * Estimate is significantly different from the non-Aboriginal estimate Note: Estimates are age-standardized to the 2006 Ontario Aboriginal identity population. Source: Cancer Care Ontario. Aboriginal Cancer Strategy II – Annual Report: Staying on the path. Toronto, Canada, 2013”

27. Obesity Percentage of population who are obese in Ontario, aged 20+, 2007-2011 * Estimate is significantly different from the non-Aboriginal estimate Note: Estimates are age-standardized to the 2006 Ontario Aboriginal identity population. Source: Cancer Care Ontario. Aboriginal Cancer Strategy II – Annual Report: Staying on the path. Toronto, Canada, 2013”

28. Alcohol consumption Percentage of population who exceed cancer prevention recommendations for alcohol consumption in Ontario, aged 20+, 2007-2011 * Estimate is significantly different from the non-Aboriginal estimate Note: Estimates are age-standardized to the 2006 Ontario Aboriginal identity population. Measured males who consumed on average >2 drinks per day and females who consumed on average >1 drink per day Source: Cancer Care Ontario. Aboriginal Cancer Strategy II – Annual Report: Staying on the path. Toronto, Canada, 2013”