1. Development of the PREMM5 Patient-Facing Electronic Application for Lynch Syndrome Risk Assessment in a Diverse Population
Tia L. Kauffman, MPH
Kathleen F. Mittendorf, Chinedu Ukaegbu, Donna Eubanks, Jake Allen, Carmit McMullen, Nangel M. Lindberg, Katrina A. B. Goddard, Sapna Syngal
April 9, 2019
Portland, OR

2. Lynch Syndrome
Colorectal cancer (CRC) is 4th leading cause of cancer; endometrial cancer is the 9th leading cause of cancer
~3% of CRC cases are caused by Lynch syndrome (LS), the most common cause of hereditary colorectal cancer
1-13%
Range varies by gene
Kohlmann W, Gruber SB. Lynch Syndrome. Updated 2018 Apr 12. In: Adam MP, Ardinger HH, Pagon RA, et al.,
editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle;
52-82%
4-12%
4-20%
25-60%
Risk of most common LS cancers
May 28, 2019
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3. Gaps in Lynch Syndrome Identification
Minority and low income patients are less likely to...
Identification of LS…
Have family history collected
Receive a genetic counseling referral
Receive genetic testing LS dx
Additional Screening
Early cancer detection
Prophylactic surgery
May 28, 2019
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4. Cancer Health Risk Assessments Reaching Many (CHARM)
The CHARM study aims to increase access to genetic testing for hereditary cancer in low income and minority populations
May 28, 2019
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5. About Validated risk assessment tool for LS Based on family history
Presented as a provider-facing tool at
May 28, 2019
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6. Adaptations made for the CHARM study
Remove requirement to know the affected side
Affected Side
Simplified language
Fewer medical terms
Language
Calculates sums for patients
Mental Math
Explains complex terms with graphics and definitions
Visual Aids
Describe process with team, experts, and patients
May 28, 2019
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7. PREMM5 – Affected Side
Requires knowing what “affected side” means and understanding how to determine affected side
Especially hard if there are cancers on both sides of the family
May 28, 2019
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8. Major Changes – Affected Side
Asks about both sides of the family
Computes affected side
Affected side
May 28, 2019
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9. PREMM5 – Health Literacy
Technical terms
May 28, 2019
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10. Major changes – Language
Reduces technical terms
Defines words using more patient-friendly terms
No more “second degree relative”
Uses colloquial terms
May 28, 2019
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11. Requires respondent to add up number of relatives
PREMM5 – Mental Math
Requires respondent to add up number of relatives
May 28, 2019
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12. Major Changes – Mental Math
Detailed questions only for specific relatives with cancer
No complicated words (1st degree)
Performs the math for the patient
May 28, 2019
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13. PREMM5 – Literacy Aids and Language
Not needed for providers
May 28, 2019
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14. Major Changes – Literacy Aids and Language
Pop-up literacy aids
PREMM5 also available in Spanish
Visual/definition aids
May 28, 2019
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15. Major Changes - Literacy and Language
Pop-up literacy aids
PREMM5 also available in Spanish
Visual/definition aids
May 28, 2019
| © Kaiser Permanente All Rights Reserved.

16. 49% Preliminary Results May 28, 2019
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17. Conclusions
Patients are able to complete a self directed family history tool to assess their risk for LS
Successful in an underserved population
Respondents are more likely to be at high risk
May 28, 2019
| © Kaiser Permanente All Rights Reserved.

18. CHARM Study Team – Thank you!
Kaiser Permanente Northwest
Katrina Goddard
Tia Kauffman
Beth Liles
Meredith Vandermeer
Nangel Lindberg
Jessica Hunter
Kate Mittendorf
Carmit McMullen
Frances Lynch
Michael Leo
Charisma Jenkins
Mari Gilmore
Jamilyn Zepp
Donna Eubanks
Alan Rope
Liz Shuster
Britta Torgrimson-Ojerio
David Bui
Chris Whitebirch
Ana Reyes
Briana Arnold
Jake Allen
Emily Schield
Alyssa Koomas
Kristin Muessig
Seattle Children’s Hospital
Benjamin Wilfond
Stephanie Kraft
Katie Porter
Devan Duenas
Kelly Shipman
University of Washington
Gail Jarvik
Michael Dorschner
Laura Amendola
Brad Rolf
Peggy Robertson
Elisabeth Rosenthal
Lena Mathew
Anh Pham
Denver Health
Katy Anderson
Sonia Okuyama
Sonia Deutsch
Rosse Rodriguez-Perez
Kristin Breslin
Elizabeth Medina
Kaiser Permanente Colorado
Heather Feigelson
Sarah Madrid
UCSF
Galen Joseph
Claudia Guerra
Robin Lee
Leslie Riddle
Kaiser Permanente Colorado
Heather Feigelson
Sarah Madrid
Columbia University
Sandra Lee
Emory
Cecelia Bellcross
Dana Farber
Sapna Syngal
Chinedu Ukaegbu