Why are familial cancer referral rates lower for BME groups?
Why are familial cancer referral rates lower for BME groups? The Midlands and UK perspective Dr Julian Barwell Genetic Alliance UK Cardiology Fetal Medicine Mendelian Genetics Common referrals Dysmorphology Chromosomal Cancer Cardiology Fetal Medicine Mendelian Genetics Common referrals Dysmorphology Chromosomal Cancer At risk relatives ? Need screening/predictive testing Affected-? Mendelian Cardiology Fetal Medicine Mendelian Genetics Common referrals Dysmorphology Chromosomal Cancer referrals 11% In UK Referrals to cancer genetics 5% BME proportion 7.9 % Non-cancer 23% BME proportion 24% Cardiology Fetal Medicine Mendelian Genetics Common referrals Dysmorphology Chromosomal Cancer rates Discussing cancer Discussing genetics Linking familial cancer to inherited risk to patient West/east midland familial cancer referrals National familial cancer referrals • Approximately 5-10% of cancers are associated with genetic mutations – 5-10% breast – 10-15% ovarian – 6% colorectal Reason for referral Male Female Both sexes Breast 7 (1%) 526 (99%) 61% Bowel 43 (32%) 93 (68%) 16% Breast and bowel 1 (5%) 18 (95) 2% Ovary - 106 12% Other 13 (17%) 62 (83%) 10% Worldwide Cancer Rates Cancer rates in South Asia: 5 times lower than in Western Europe Worldwide incidence – South Asia All cancers Breast Ovarian Colorectal 266.9 89.1 12.4 30.8 India 98.5 3.3 times 22.9 5.7 7.3 times 3.9 Pakistan 114.7 31.5 5.8 4.6 Bangladesh 124.8 27.2 4.0 4.2 UK Age-standardised rates (per 100,000) Data from GLOBOCAN 2008 2.4 times Bowel Cancer European Age-Standardised Incidence Rate, by Government Office Region, 2006-2008 Referral Rates BME Leicestershire 24.4 % Referral Rates 11.2% UK 7.9% 5% For Leicestershire, we need to expect 15.4% referral rates. Significantly different from actual data! Total cancer referrals for East Midlands over time Leicester Cancer Genetics Activity Trend - Overall 900 800 No of Patients Seen 700 600 500 400 300 200 100 0 2006/07 2007/08 2008/09 2009/10 2010/11 Year BME referral rates over time for East Midlands Leicester Cancer Genetics Activity Trend - BME 50 45 No of Patients Seen 40 35 30 25 20 15 10 5 0 2006/07 2007/08 2008/09 2009/10 2010/11 Year Leicester referrals by BME group 2010 Black African FAP/HNPCC Black Carribean Chinese Colon Indian Other Asian Other mixed Ovarian Other White Pakistani BRCA1/2 White and Asian White and Black Carribean Breast White British 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% White Irish Birmingham referrals by BME group HNPCC/FAP Black African Black Carribean Chinese All Colon Indian Other Asian Other mixed Ovarian Other White Pakistani BRCA1/2 White and Asian White and Black Caribbean White British All Breast White Irish 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national Screening/late presentation/less Mendelian diagnoses Why are referral rates lower in familial cancer for BME groups? No Polygenic Genetic Environmental risk factors Local proportion BME No Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national Screening/late presentation/less Mendelian diagnoses Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Yes, x3.x5 Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national Screening/late presentation/less Mendelian diagnoses Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Yes, 0.40-0.7 Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national Screening/late presentation/less Mendelian diagnoses Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Not easily found Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national Screening/late presentation/less Mendelian diagnoses Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national 11.1 vs 11.2 Screening/late presentation/less Mendelian diagnoses Lessons • • • • • • Cancer burden Communication with community and NHS Criteria for referrals Family history forms Clinical coding to assess Impact Bids Angela Tilley, Teodora Petrova, Manju Netto, Nicole McGrath, Lynn Fox, Helen Kennedy Ian Robinson, Elspeth McDonald, Will Steward, Clandia Sheik, Vanita Jivanji, Priyank Jani, Gabby Fuchs, Cyril Chapman and Julian Barwell Leicester referrals by BME group 2000 FAP Black African Colon Indian Other Asian Background Ovaian White and Black Caribbean BRCA White British Breast 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Breast Cancer in the Asian Population • Characterized by low incidence rate and early age-of-onset • Differences may be due to hormonal, reproductive, lifestyle, and genetic factors • Sharp pre-menopausal rise, which plateaus after 50yrs • Incidence of early onset disease (< 40 yrs) doesn’t show significant geographic variation1 • Therefore high proportion breast cancer cases may be due to BRCA1 and BRCA2 mutations2 Possible Genetic Differences India • Contribution of BRCA1 mutations to familial breast cancer is similar to reports worldwide, but the contribution of BRCA2 mutations seems rather low among Indian women3 Japan & Philippines • BRCA2 plays principal role in genetic susceptibility4,5 Pakistan • Highest rates breast cancer of all Asian countries and some of the highest rates of ovarian cancer worldwide • High incidence of breast and ovarian cancer in consanguineous families ?recessive genes6 Founder mutations • Population specific founder mutations (BRCA1: 185delAG, 5382insC, BRCA2:6174delT in Jews, BRCA2: 999del5 in the Icelandic population) are already known • Several studies have found novel BRCA1 and BRCA2 mutations in Asian Countries 7,8 • Could there be Asian founder mutations? To date Japan has largest number of recurrent mutations of any Asian population2 Cancer Incidence and Survival by Major Ethnic Group in England, 2002 - 2006 Bowel Cancer ASIAN POPULATION As known All white Non-white relative increase < 65 years 0.54 0.45 0.58 Breast Cancer ASIAN POPULATION Rate ratio >65 years 0.40 0.33 0.43 All ages 0.45 0.37 0.48 Rate ratio < 65 years >65 years All ages As known 0.68 0.59 0.65 All white 0.52 0.45 0.50 Non-white relative increase 0.76 0.66 0.73 *Incidence Rates for White Ethnic Group = 1 Teodora Petrova, Manju Netto, Nicole McGrath, Lynn Fox, Helen Kennedy Ian Robinson, Elspeth McDonald, Will Steward, Clandia Sheik, Vanita Jivanji, Priyank Jani, Gabby Fuchs, Cyril Chapman and Julian Barwell Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Yes, x3.x5 Cancer rates in UK Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national Screening/late presentation/less Mendelian diagnoses Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Yes, 0.40-0.7 Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national Screening/late presentation/less Mendelian diagnoses Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Not easily found Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national Screening/late presentation/less Mendelian diagnoses Why are referral rates lower in familial cancer for BME groups? Polygenic Genetic Environmental risk factors Local proportion BME Mendelian Cancer rates in S. Asia for relatives Generational and age breakdown Cancer rates in UK Recognition by patient of FH relevance Recognition by oncologist/surgeon of FH relevance in cancer patients Discussing FH with GP Referral Patient not seen Impact Comparison with Birmingham and national 11.1 vs 11.2 Screening/late presentation/less Mendelian diagnoses
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