Cancer Trials Participation, Cancer Trials Participation, Risk and NumeracyRisk and Numeracy

Donna L. LaVallie, DO, MPHActing Instructor, Medical Education and

Biomedical InformaticsUniversity of Washington

March 12, 2007

OverviewOverview

• Topic significance

• Projects Review– Elders 2006– Ft. Peck– Elders 2007– Northwest Indian College/Lummi

• Summary

Topic SignificanceTopic Significance

• Disproportionate cancer burden, cancer trial under representation for ethnic minorities

• Risk information commonly encountered--- Understood?

““Risk” : statements of chanceRisk” : 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%”.

NumeracyNumeracy

• 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

Elders 2006

Ft. Peck 2006

Elders 2007

NWIC, Lummi

Trials participationNumeracy

Visual, narrative riskNumeracyAdult population

Visual, narrative riskNumeracyRandomization

Visual, narrative risk; NumeracyRandomizationTailoring visualYounger population

Elders survey 2006Elders survey 2006

• “Cancer trials participation and numeracy”

• Factors influencing participation in cancer trial: 38 questions

• Numeracy: 6 questions• Demographics

Elders 2006: promoters to Elders 2006: promoters to participationparticipation

• 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

Elders 2006: barriers to Elders 2006: barriers to participationparticipation

• Distance from study site• High risk for breach of confidentiality

Ft. Peck survey 2006Ft. Peck survey 2006

• T32 collaboration—medical student research program

• Anonymous survey, 25 questions, 4 versions

• Textual/narrative vs visual risk information

• Numeracy/risk questions

Visual Risk ImageVisual Risk Image

Visual Risk ImageVisual Risk Image

do not develop cancerdevelop cancer

People who DO NOT participate in either Prevention Plan A or B

Ft. Peck survey 2006: resultsFt. 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

Elders survey 2007Elders 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

Elders survey 2007: resultsElders survey 2007: results

• 84 surveys completed• Analysis, results pending

Northwest Indian College, Lummi Northwest Indian College, Lummi 20072007

• Examine several facets relating to participation in biomedical research

• Anonymous survey, registration• Main campus, 6 distance sites• Focus groups

Northwest Indian College, Lummi Northwest Indian College, Lummi 20072007

• Strongest predictors of willingness to participate in cancer trial

• Attitudes to randomization• Textual vs visual risk information• Focus group input for “visual”

ConclusionsConclusions

• Need to increase American Indian/Alaska Natives’ participation in cancer trials

• We need to LEARN HOW to present risk information

Future ?Future ?

• Designing health promotion, disease prevention materials that incorporate “user friendly” risk information

• Partnerships with Native communities• Culturally competent research

professionals

THANK YOU FOR YOUR THANK YOU FOR YOUR ATTENTIONATTENTION