Understanding multilevel barriers and facilitators of cascade - PowerPoint PPT Presentation

Understanding multilevel barriers and facilitators of cascade screening for Lynch syndrome Megan C Roberts, PhD Division of Pharmaceutical Outcomes and Policy

Acknowledgements • • Charlotte O’Brien Dave Dotson • • Heather Hampel Karen Loy • • Jennifer Leeman Jim Evans • • Amit Patel Jonathan Berg • • Alanna K Rahm Maria Fernandez • • Dan Reuland Hanna Sanoff • • Swetha Srinivasan fightcolorectalcancer.org • • Nae Yeon Won Funding : National Center for Advancing Translational • Sarah T Wright Sciences, National Institutes of • Lynch Syndrome International Health through Grant KL2TR002490 2

Lynch Syndrome Screening as a Priority 3

Lynch Syndrome Screening as a Priority 4

Intervention Mapping Approach Conduct a Intervention Intervention Intervention Implementation needs outcomes and Evaluation plan design production Plan assessment objectives Bartholomew LK et al. Health Educ Behav 1998 5

Intervention Mapping Approach Conduct a Intervention Intervention Intervention Implementation needs outcomes and Evaluation plan design production Plan assessment objectives Bartholomew LK et al. Health Educ Behav 1998 6

Planning Group Genetic counselors Patient Primary care Oncologist Implementation scientists Interventionists 7

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) 8

Patient recruitment 9

Patient demographics N=20 n Race Non-Hispanic White 12 Non-Hispanic Black 4 Ethnicity Hispanic 5 Gender Female 12 Male 8 10

Results

Barriers 12

Barriers ‒ Low awareness about Lynch syndrome* ‒ Psychosocial* ‒ Lack of provider follow-up ‒ Accessibility to genetic counseling services* ‒ Fear of employment and insurance discrimination* 13

Barriers • “Well, I think just awareness ‒ Low awareness about Lynch in general… I had never even syndrome* heard of it [LS] until I got ‒ Psychosocial* diagnosed with it. BRCA I ‒ Lack of provider follow-up knew about, and that's why I ‒ had initially even asked for Accessibility to genetic testing.” [PA18] counseling services* ‒ Fear of employment and insurance discrimination* 14

Barriers • “…you know, in our culture, ‒ Low awareness about Lynch it's taboo to be sick. You syndrome* know, we don't like to ‒ Psychosocial* advertise the fact that we're ‒ Lack of provider follow-up sick. Everybody's supposed ‒ to be healthy and productive Accessibility to genetic and so, a lot of people hide counseling services* stuff.” [PA2] ‒ Fear of employment and insurance discrimination* 15

Barriers • “Well, it takes resources to go ‒ Low awareness about Lynch back to these folks, and I syndrome* don't know whether there's ‒ Psychosocial* any way to bill for those ‒ Lack of provider follow-up services and so, figuring out ‒ how to garner resources to Accessibility to genetic allow follow-up would be a counseling services* huge barrier, actually.” [PR10] ‒ Fear of employment and insurance discrimination* 16

Barriers • “Well, I think as we already ‒ Low awareness about Lynch understand, there is a syndrome* shortage of genetic ‒ Psychosocial* counselors and genetics professionals in general, so ‒ Lack of provider follow-up even once a patient is on ‒ Accessibility to genetic board with getting this family counseling services* variant testing that they personally need, you know, ‒ Fear of employment and finding someone that they can insurance discrimination* do that with can be a challenge.” [AD1] 17

Barriers • “I've had some people who, ‒ Low awareness about Lynch like, they are career army, syndrome* and they do not want their ‒ Psychosocial* mutation status to be ‒ Lack of provider follow-up recorded anywhere within ‒ their VA medical records or Accessibility to genetic army medical records counseling services* because that could impede ‒ Fear of employment and their progression in their army insurance discrimination* career…” [PR2] 18

Facilitators 19

Facilitators ‒ Motivation to inform* ‒ Free testing offered by genetic testing labs 20

Facilitators “I will say that I think patients ‒ Motivation to inform* that I see are usually very ‒ Free testing offered by genetic strongly motivated to tell testing labs children - their children - and have their children tested...” [PR3] 21

Facilitators • “… what really made it much ‒ Motivation to inform* easier because as soon as ‒ Free testing offered by people hear "free testing," genetic testing labs like, that has really been something that has made it easier to get people to come in within that time window.” [PR2] 22

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 23

Intervention Mapping Approach Conduct a Intervention Intervention Intervention Implementation needs outcomes and Evaluation plan design production Plan assessment objectives Bartholemew LK et al. Health Educ Behav 1998 24

Thank You! megan.roberts@unc.edu @mclarkeroberts

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 26