Understanding multilevel barriers and facilitators of cascade - - PowerPoint PPT Presentation

Understanding multilevel barriers and facilitators

• f cascade screening for Lynch syndrome

Megan C Roberts, PhD Division of Pharmaceutical Outcomes and Policy

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Acknowledgements

• Dave Dotson
• Heather Hampel
• Jennifer Leeman
• Amit Patel
• Alanna K Rahm
• Dan Reuland
• Swetha Srinivasan
• Nae Yeon Won
• Sarah T Wright
• Lynch Syndrome International
• Charlotte O’Brien
• Karen Loy
• Jim Evans
• Jonathan Berg
• Maria Fernandez
• Hanna Sanoff
• fightcolorectalcancer.org
• Funding: National Center for

Advancing Translational Sciences, National Institutes of Health through Grant KL2TR002490

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Lynch Syndrome Screening as a Priority

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Lynch Syndrome Screening as a Priority

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Intervention Mapping Approach

Conduct a needs assessment Intervention

• utcomes and
• bjectives

Intervention design Intervention production Implementation Plan Evaluation plan

Bartholomew LK et al. Health Educ Behav 1998

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Intervention Mapping Approach

Conduct a needs assessment Intervention

• utcomes and
• bjectives

Intervention design Intervention production Implementation Plan Evaluation plan

Bartholomew LK et al. Health Educ Behav 1998

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Planning Group

Genetic counselors Patient Primary care Oncologist Implementation scientists Interventionists

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Needs Assessment

Systematic Literature Review* Semi-structured interviews :

‒ Administrators (Payers, genetics clinic managers, patient advocates, testing companies/labs, n=20) ‒ Providers (Genetic counselors, Gastroenterologists, Gynecologists, Oncologists, and PCPs, n=20) ‒ Patients (n=20)

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Patient recruitment

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Patient demographics

N=20 n Race Non-Hispanic White 12 Non-Hispanic Black 4 Ethnicity Hispanic 5 Gender Female 12 Male 8

Results

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Barriers

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Barriers

‒ Low awareness about Lynch syndrome* ‒ Psychosocial* ‒ Lack of provider follow-up ‒ Accessibility to genetic counseling services* ‒ Fear of employment and insurance discrimination*

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Barriers

‒ Low awareness about Lynch syndrome* ‒ Psychosocial* ‒ Lack of provider follow-up ‒ Accessibility to genetic counseling services* ‒ Fear of employment and insurance discrimination*

• “Well, I think just awareness

in general… I had never even heard of it [LS] until I got diagnosed with it. BRCA I knew about, and that's why I had initially even asked for testing.” [PA18]

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Barriers

‒ Low awareness about Lynch syndrome* ‒ Psychosocial* ‒ Lack of provider follow-up ‒ Accessibility to genetic counseling services* ‒ Fear of employment and insurance discrimination*

• “…you know, in our culture,

it's taboo to be sick. You know, we don't like to advertise the fact that we're

• sick. Everybody's supposed

to be healthy and productive and so, a lot of people hide stuff.” [PA2]

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Barriers

‒ Low awareness about Lynch syndrome* ‒ Psychosocial* ‒ Lack of provider follow-up ‒ Accessibility to genetic counseling services* ‒ Fear of employment and insurance discrimination*

• “Well, it takes resources to go

back to these folks, and I don't know whether there's any way to bill for those services and so, figuring out how to garner resources to allow follow-up would be a huge barrier, actually.” [PR10]

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Barriers

‒ Low awareness about Lynch syndrome* ‒ Psychosocial* ‒ Lack of provider follow-up ‒ Accessibility to genetic counseling services* ‒ Fear of employment and insurance discrimination*

• “Well, I think as we already

understand, there is a shortage of genetic counselors and genetics professionals in general, so even once a patient is on board with getting this family variant testing that they personally need, you know, finding someone that they can do that with can be a challenge.” [AD1]

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Barriers

‒ Low awareness about Lynch syndrome* ‒ Psychosocial* ‒ Lack of provider follow-up ‒ Accessibility to genetic counseling services* ‒ Fear of employment and insurance discrimination*

• “I've had some people who,

like, they are career army, and they do not want their mutation status to be recorded anywhere within their VA medical records or army medical records because that could impede their progression in their army career…” [PR2]

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Facilitators

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Facilitators

‒ Motivation to inform* ‒ Free testing offered by genetic testing labs

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Facilitators

‒ Motivation to inform* ‒ Free testing offered by genetic testing labs “I will say that I think patients that I see are usually very strongly motivated to tell children - their children - and have their children tested...” [PR3]

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Facilitators

‒ Motivation to inform* ‒ Free testing offered by genetic testing labs

• “…what really made it much

easier because as soon as people hear "free testing," like, that has really been something that has made it easier to get people to come in within that time window.” [PR2]

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Recommendations

• Improve patient education*
• Improve provider education*
• Prepare patients to communicate with family members
• Implement clinical workflow solutions
• Optimize staffing resources within clinical practice
• Standardize cascade screening process at the national level

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Intervention Mapping Approach

Conduct a needs assessment Intervention

• utcomes and
• bjectives

Intervention design Intervention production Implementation Plan Evaluation plan

Bartholemew LK et al. Health Educ Behav 1998

Thank You!

megan.roberts@unc.edu @mclarkeroberts

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The Division of Pharmaceutical Outcomes and Policy

Conducting and training others in impactful, multi-disciplinary prevention and treatment research that serves local and global needs. Megan C. Roberts, PhD megan.roberts@unc.edu @mclarkeroberts

For PhD program information: Delesha Carpenter, PhD, MSPH Division Director of Graduate Admissions 828-250-3916 | dmcarpenter@unc.edu