The Development, Distribution and Evaluation of a Hepatitis C Educational Videotape Massachusetts Department of Public Health Division of Epidemiology and Immunization Church, Gilmore, Baxter, Pokela, Kludt, Goldstein, Matyas, DeMaria San Antonio, January 2003

Background: Evolution of Educational Program in MA Program started in 1999 Previous educational efforts: Primary care providers Nurses General public People at-risk for hepatitis C infection Active injection drug users (IDU)

New Focus: Newly Diagnosed Videotape: based on information from needs assessment activities What information do people need after being diagnosed? What is the best way to present that information? What are tools that people living with hepatitis C need?

Development Focus groups Series of 5 groups in February, 2001 2 with English-speaking people in recovery 2 with Spanish-speaking people in recovery 1 with transfusion/transplant recipients

Results of Initial Focus Groups - 1 Good baseline knowledge among former/current IDUs Poor understanding of screening tests Good understanding of major transmission routes, more confusion with lower risk behaviors Poor understanding of need for hepatitis A and B vaccine Spanish speakers indicated a need for help in advocating for themselves in the health care setting

Results of Initial Focus Groups - 2 Concern over availability of non-biased, comprehensive information on hepatitis C Concern over knowledge of health care providers on hepatitis C and recovery from drug addiction People with a history of transfusion/transplantation had less information and fewer available resources Spanish speaking participants also reported limited resources available in Spanish Most people received the diagnosis through their primary care provider

Results of Initial Focus Groups - 3 Having access to an educational videotape at the time of diagnosis was viewed positively Venues to view a video mentioned were: MD’s office, home, drug treatment facility, support groups Requested supplementary materials with a focus on liver health and co-infection with HCV and HIV Materials developed should be optimistic, delivered by a credible spokesperson and available in non-technical language

Next Steps in Development Hepatitis C Advisory Committee Education and Awareness Working Group Identify distribution mechanisms Evaluate developed videotape to determine content of supplementary materials

Evaluation of Videotape 4 focus groups in April, 2002 2 with people at-risk but not diagnosed with hepatitis C: 1 with transfusion/transplant recipients (8 participants) 1 with former IDUs (9 participants) 2 with IDUs diagnosed with hepatitis C 1 in English, 1 in Spanish (9 participants each)

Methodology All participants screened to ensure they met criteria Pre- and Post-tests used to determine video’s impact on participant knowledge All focus groups were audiotaped Participants provided with $100.00 incentive

Percent of Correct Responses to HCV Knowledge test

High Knowledge  High Knowledge Knowledge Item Pre-test % correct Post-test % correct Transmitted via blood 100 Damages liver 97 Not airborne Sexual transmission 91 89 IDU transmission 86 Blood transfusion transm. Can be asymptomatic 83 94 Side effects of treatment 80

Low Knowledge  High Knowledge Knowledge Item Pre-test % correct Post-test % correct Interpretation of EIA 20 89 Positive EIA  cleared virus 17 80 Interferon is a treatment 31 54 Not transmitted via saliva 63 More than one genotype 57 83 No vaccine for hepatitis C Can reduce risk of progression (liver health)

Low Knowledge  Low Knowledge Knowledge Item Pre-test % correct Post-test % correct What is a RIBA test 11 What is a PCR test 3 9 Can clear HCV w/out meds. 14 20 Combination treatment What is an EIA 40 Possibility of false positives 46 Impact of alcohol use on liver 66 63

Questions not answered by the video Is HCV fatal? What is reinfection? How often should a person be re-tested? More detail wanted on: Treatment options (including urgency, length of treatment and side effects) Different available tests (including genotyping) Insurance coverage What resources are available

Additional Materials Suggested List of questions to discuss with health care provider Written summary of video Handout with detailed information on testing Public information campaign to reduce stigma and encourage at-risk people to get tested

Supplemental Booklet: Format Covers all information in video and provides additional detail in some areas Provides detail on liver health, testing, treatment, co-infection, and available resources List of questions to discuss with a medical provider Done as one document rather than several different handouts for ease of use Created in conjunction with a brochure for people recently diagnosed with HIV (“Now that you Know”)

Distribution Mailing to primary care providers (business reply card) MDPH funded programs (Hepatitis C Program, HIV/AIDS Bureau, Bureau of Substance Abuse Services) Bulk packages to: hospitals, managed care organizations, community health centers, long-term care facilities, appropriate academic settings Video/Booklet to GI and ID specialists, jails, local health departments, libraries, ICPs In total, mailing will target ~6,000

What next? Need for low-literacy materials on co-infection with HIV/Hepatitis C Evaluate effectiveness of supplemental booklet Additional education for general public Future of programs in MA?