Translational and Personalized Medicine Initiative Quality of Care

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Translational and Personalized Medicine Initiative: Quality of Care Project Report

Translational and Personalized Medicine Initiative: Quality of Care Project Report

Translational and Personalized Medicine Initiative: Quality of Care Project Report Newfoundland Labrador Colorectal Cancer

Translational and Personalized Medicine Initiative: Quality of Care Project Report Newfoundland Labrador Colorectal Cancer Owen Parfrey BBA, MBS October 8, 2015

Newfoundland Labrador Colorectal Cancer Background • NL has the highest mortality rate of CRC

Newfoundland Labrador Colorectal Cancer Background • NL has the highest mortality rate of CRC in Canada • NL has the highest rate of familial CRC in the world. • 30% of first time CRC cases have at least 1 family member with CRC • 12% of CRC has been associated with high risk family histories including Lynch Syndrome. • Although 70% of first case CRC are sporadic, nonetheless family members have a lifetime risk of 14%, twice that of the general population. TPMI Qo. C Quarterly Report

Newfoundland Labrador Colorectal Cancer Background First Case CRC < 75 Years CRC Mutations 4%

Newfoundland Labrador Colorectal Cancer Background First Case CRC < 75 Years CRC Mutations 4% High Risk 8% Familial 18% Sporadic 70% Life time risk in family members 40 -50% 40% 20% 0% Extensive Screening at a Young Age Frequent Screening at a Later Age CRC Screening Population Based Screening Recommendations TPMI Qo. C Quarterly Report

Newfoundland Labrador Colorectal Cancer – NL vs ONT Incidence Rates Males 70 90 80

Newfoundland Labrador Colorectal Cancer – NL vs ONT Incidence Rates Males 70 90 80 70 60 50 NL 40 ON 30 20 10 0 TPMI Qo. C Quarterly Report Age-standardized incidence rate 100 Females 60 50 40 30 20 10 0 NL ON

Newfoundland Labrador Colorectal Cancer – Methodology • First patients seen April, 2011 • Two

Newfoundland Labrador Colorectal Cancer – Methodology • First patients seen April, 2011 • Two Regions: St. John’s & GFW • CRC, ovarian and endometrial first time cancer cases from 2008 are invited to attend. • Each proband asked to complete FHQ and family risk is determined TPMI Qo. C Quarterly Report

Colorectal Cancer - Objectives • Provide recommendations on colonoscopy screening to the families of

Colorectal Cancer - Objectives • Provide recommendations on colonoscopy screening to the families of patients with CRC defined by family risk • Identify families with Lynch Syndrome TPMI Qo. C Quarterly Report

Colorectal Cancer – Figures and Data Visualisation 52%

Colorectal Cancer – Figures and Data Visualisation 52%

Colorectal Cancer – Figures and Data Visualisation Reason for Refusal 1% 1% Abrupt No

Colorectal Cancer – Figures and Data Visualisation Reason for Refusal 1% 1% Abrupt No or No Reason Given 3% Remove After ++ F/U Calls 5% Too Old or Too Sick 7% 40% 11% Single Cancer Adopted or No Family History Family in Screening Already Denies CRC 16% Poor English or Low Intelligence Angry with System/Care

Colorectal Cancer – Figures and Data Visualisation 30%

Colorectal Cancer – Figures and Data Visualisation 30%

Colorectal Cancer – Observations 1. The low risk are dealt with relatively quickly and

Colorectal Cancer – Observations 1. The low risk are dealt with relatively quickly and effectively – more specific 2. 70% of participants recommended to see a GC are still waiting for an appointment, up to 18 months TPMI Qo. C Quarterly Report

Colorectal Cancer – Next Phase Intervention Recommendations 1. Use an electronic decision tree to

Colorectal Cancer – Next Phase Intervention Recommendations 1. Use an electronic decision tree to provide screening recommendations to families. Only refer those at the highest risk to a Genetic Counsellor 2. In diagnosing Lynch Syndrome, we recommend a pathology first approach rather than a family first approach. Refer patients with IHC negative for MMR protein for further genetic workup. TPMI Qo. C Quarterly Report

Colorectal Cancer Questions? TPMI Qo. C Quarterly Report

Colorectal Cancer Questions? TPMI Qo. C Quarterly Report