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Cancer Trials Participation, Risk and Numeracy
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  1. Cancer Trials Participation, Risk and Numeracy Donna L. LaVallie, DO, MPH Acting Instructor, Medical Education and Biomedical Informatics University of Washington March 12, 2007

  2. Overview • Topic significance • Projects Review • Elders 2006 • Ft. Peck • Elders 2007 • Northwest Indian College/Lummi • Summary

  3. Topic Significance • Disproportionate cancer burden, cancer trial under representation for ethnic minorities • Risk information commonly encountered--- Understood?

  4. “Risk” : statements of chance • “Medication XX lowers your cholesterol by 30%” • “Smokers are 10 times more likely to develop lung cancer”. • “Your chance of developing breast cancer in the next 10 years is 0.4%”.

  5. Numeracy • Numeracy: “ability to handle basic probability and numerical concepts” • Numeracy skills—strong influence in accurately assessing risk • Inadequate numeracy skills not uncommon—found to be common among “educated” segments of population

  6. NWIC, Lummi Visual, narrative risk; Numeracy Randomization Tailoring visual Younger population Trials participation Numeracy Visual, narrative risk Numeracy Randomization Elders 2007 Elders 2006 Visual, narrative risk Numeracy Adult population Ft. Peck 2006

  7. Elders survey 2006 • “Cancer trials participation and numeracy” • Factors influencing participation in cancer trial: 38 questions • Numeracy: 6 questions • Demographics

  8. Elders 2006: promoters to participation • Lead researcher of Native descent • Study physician experienced in working with American Indians/Alaska Natives • Personal experience with cancer being studied • Family support for participation • Belief/hope study leads to new Rx

  9. Elders 2006: barriers to participation • Distance from study site • High risk for breach of confidentiality

  10. Ft. Peck survey 2006 • T32 collaboration—medical student research program • Anonymous survey, 25 questions, 4 versions • Textual/narrative vs visual risk information • Numeracy/risk questions

  11. Visual Risk Image

  12. Visual Risk Image do not develop cancer develop cancer

  13. Ft. Peck survey 2006: results • 209 completed surveys • Odds of correct answer significantly increased for those who received risk information in a textual/narrative PLUS visual format as opposed to textual/narrative ONLY • OR=2.7, CI=1.6-4.5

  14. Elders survey 2007 • “Cancer risk perceptions and understanding of visual risk information” • 6 survey versions, 30 questions • Visual vs narrative risk information • Attitudes to randomization • Numeracy/risk questions

  15. Elders survey 2007: results • 84 surveys completed • Analysis, results pending

  16. Northwest Indian College, Lummi 2007 • Examine several facets relating to participation in biomedical research • Anonymous survey, registration • Main campus, 6 distance sites • Focus groups

  17. Northwest Indian College, Lummi 2007 • Strongest predictors of willingness to participate in cancer trial • Attitudes to randomization • Textual vs visual risk information • Focus group input for “visual”

  18. Conclusions • Need to increase American Indian/Alaska Natives’ participation in cancer trials • We need to LEARN HOW to present risk information

  19. Future ? • Designing health promotion, disease prevention materials that incorporate “user friendly” risk information • Partnerships with Native communities • Culturally competent research professionals

  20. THANK YOU FOR YOUR ATTENTION