Skip to main content

Advertisement

Log in

A mixed-methods approach to understanding perceptions of hepatitis B and hepatocellular carcinoma among ethnically diverse Black communities in South Florida

Cancer Causes & Control Aims and scope Submit manuscript

Abstract

Purpose

Hepatitis B (HBV), the leading cause of hepatocellular carcinoma (HCC), disproportionately affects minorities. Compared to other races, Blacks more often present with advanced HCC and have decreased survival. We observed higher HBV-associated HCC rates among Blacks than reported nationally. In our center, Haitian Blacks had the highest rates of HBV-associated HCC and shorter survival compared to other Blacks. We investigated knowledge and perceptions regarding HBV and HCC among Blacks born in the United States or Haiti.

Methods

Using community partnerships, participants were recruited via word of mouth, email, social media or from Hepatology clinic. Focus groups were conducted in Haitian Creole or English and stratified by birthplace, gender and infection status. Discussions were audio-recorded and transcribed verbatim. A constant comparative method was used for data analysis; themes are based on conversational details.

Results

There were 55 participants; 49% were male and 27% had chronic HBV. Only 42% of Haitian Blacks knew about HBV prior to participation vs. 78% of African Americans, p 0.03. Both groups expressed that fear, mistrust of the medical establishment, denial and stigma might compel persons to avoid seeking care. Both groups attributed higher rates of late stage HCC diagnosis in Blacks to inadequate financial resources and education. Those with HBV reported confusion regarding their infection and suboptimal communication with healthcare providers.

Conclusions

In two communities disproportionately affected by HBV, misconceptions about disease transmission, stigma, low health literacy and decreased access to care may limit detection for HBV. Culturally relevant community-based interventions are needed to increase HBV detection.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Abbreviations

AA:

African American

AIDS:

Acquired immunodeficiency syndrome

BCSR:

Behavioral Community Shared Resource Core

CDC:

Centers for Disease Control and Prevention

HBV:

Hepatitis B virus

HCV:

Hepatitis C virus

HHS:

Department of Health and Human Services

HIV:

Human immunodeficiency virus

HCC:

Hepatocellular carcinoma

SAHL:

Short Assessment of Health Literacy

US:

United States

References

  1. White DL, Thrift AP, Kanwal F, Davila J, El-Serag HB (2017) Incidence of hepatocellular carcinoma in all 50 United States, from 2000 through 2012. Gastroenterology 152(4):812–820. https://doi.org/10.1053/j.gastro.2016.11.020

    Article  PubMed  Google Scholar 

  2. Rahib L, Smith BD, Aizenberg R, Rosenzweig AB, Fleshman JM, Matrisian LM (2014) Projecting cancer incidence and deaths to 2030: the unexpected burden of thyroid, liver, and pancreas cancers in the United States. Cancer Res 74(11):2913–2921. https://doi.org/10.1158/0008-5472.CAN-14-0155

    Article  CAS  PubMed  Google Scholar 

  3. Kulik L, El-Serag HB (2018) Epidemiology and management of hepatocellular carcinoma. Gastroenterology. https://doi.org/10.1053/j.gastro.2018.08.065

    Article  PubMed  PubMed Central  Google Scholar 

  4. Makarova-Rusher OV, Altekruse SF, McNeel TS et al (2016) Population attributable fractions of risk factors for hepatocellular carcinoma in the United States. Cancer 122(11):1757–1765. https://doi.org/10.1002/cncr.29971

    Article  PubMed  PubMed Central  Google Scholar 

  5. Kim HS, Rotundo L, Yang JD et al (2017) Racial/ethnic disparities in the prevalence and awareness of Hepatitis B virus infection and immunity in the United States. J Viral Hepat 24(11):1052–1066. https://doi.org/10.1111/jvh.12735

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  6. Hyun Kim B, Ray KW (2018) Epidemiology of hepatitis B virus infection in the United States. Clin Liver Dis (Hoboken) 12(1):1–4. https://doi.org/10.1002/cld.732

    Article  Google Scholar 

  7. Schweitzer A, Horn J, Mikolajczyk RT, Krause G, Ott JJ (2015) Estimations of worldwide prevalence of chronic hepatitis B virus infection: a systematic review of data published between 1965 and 2013. Lancet. https://doi.org/10.1016/S0140-6736(15)61412-X

    Article  PubMed  Google Scholar 

  8. https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5125a3.htm. Accessed 8 Oct 2020

  9. https://www.cdc.gov/hepatitis/statistics/2013surveillance/pdfs/2013hepsurveillancerpt.pdf. Accessed 8 Oct 2020

  10. https://www.cdc.gov/hepatitis/statistics/2016surveillance/index.htm#tabs-5-1. Accessed 8 Oct 2020

  11. Ioannou GN (2011) Hepatitis B virus in the United States: infection, exposure, and immunity rates in a nationally representative survey. Ann Intern Med 154(5):319–328. https://doi.org/10.7326/0003-4819-154-5-201103010-00006

    Article  PubMed  Google Scholar 

  12. Roberts H, Kruszon-Moran D, Ly KN et al (2016) Prevalence of chronic hepatitis B virus (HBV) infection in U.S. households: National Health and Nutrition Examination Survey (NHANES), 1988–2012. Hepatology 63(2):388–397. https://doi.org/10.1002/hep.28109

    Article  CAS  PubMed  Google Scholar 

  13. Forde KA (2017) Ethnic disparities in chronic hepatitis B infection: African Americans and hispanic americans. Curr Hepatol Rep 16(2):105–112. https://doi.org/10.1007/s11901-017-0348-8

    Article  PubMed  PubMed Central  Google Scholar 

  14. Tohme RA, Andre-Alboth J, Tejada-Strop A et al (2016) Hepatitis B virus infection among pregnant women in Haiti: a cross-sectional serosurvey. J Clin Virol 76:66–71. https://doi.org/10.1016/j.jcv.2016.01.012

    Article  PubMed  PubMed Central  Google Scholar 

  15. Jones PD, Diaz C, Wang D, Gonzalez-Diaz J, Martin P, Kobetz E (2018) The impact of race on survival after hepatocellular carcinoma in a diverse American population. Dig Dis Sci 63(2):515–528. https://doi.org/10.1007/s10620-017-4869-3

    Article  PubMed  Google Scholar 

  16. Hu DJ, Xing J, Tohme RA et al (2013) Hepatitis B testing and access to care among racial and ethnic minorities in selected communities across the United States, 2009–2010. Hepatology 58(3):856–862. https://doi.org/10.1002/hep.26286

    Article  PubMed  Google Scholar 

  17. Chu D, Yang JD, Lok AS et al (2013) Hepatitis B screening and vaccination practices in Asian American primary care. Gut Liver 7(4):450–457. https://doi.org/10.5009/gnl.2013.7.4.450

    Article  PubMed  PubMed Central  Google Scholar 

  18. Mitchell AE, Colvin HM, Palmer BR (2010) Institute of medicine recommendations for the prevention and control of hepatitis B and C. Hepatology 51(3):729–733. https://doi.org/10.1002/hep.23561

    Article  PubMed  Google Scholar 

  19. Ma GX, Shive SE, Fang CY et al (2007) Knowledge, attitudes, and behaviors of hepatitis B screening and vaccination and liver cancer risks among Vietnamese Americans. J Health Care Poor Underserved 18(1):62–73. https://doi.org/10.1353/hpu.2007.0013

    Article  PubMed  PubMed Central  Google Scholar 

  20. Nishimura A, Shiono P, Stier D, Shallow S, Sanchez M, Huang S (2012) Knowledge of hepatitis B risk factors and prevention practices among individuals chronically infected with hepatitis B in San Francisco, California. J Community Health 37(1):153–158. https://doi.org/10.1007/s10900-011-9430-2

    Article  PubMed  Google Scholar 

  21. Shah SA, Chen K, Marneni S et al (2015) Hepatitis B awareness and knowledge in hepatitis B surface antigen-positive parturient immigrant women from West Africa in the Bronx, New York. J Immigr Minor Health 17(1):302–305. https://doi.org/10.1007/s10903-013-9914-5

    Article  PubMed  Google Scholar 

  22. Shiau R, Bove F, Henne J, Zola J, Fang T, Fernyak S (2012) Using survey results regarding hepatitis B knowledge, community awareness and testing behavior among Asians to improve the San Francisco Hep B free campaign. J Community Health 37(2):350–364. https://doi.org/10.1007/s10900-011-9452-9

    Article  PubMed  Google Scholar 

  23. Bailey MB, Shiau R, Zola J et al (2011) San Francisco hep B free: a grassroots community coalition to prevent hepatitis B and liver cancer. J Community Health 36(4):538–551. https://doi.org/10.1007/s10900-010-9339-1

    Article  PubMed  Google Scholar 

  24. https://hepfree.nyc/. Accessed 8 Oct 2020

  25. Pollack H, Wang S, Wyatt L et al (2011) A comprehensive screening and treatment model for reducing disparities in hepatitis B. Health Aff (Millwood) 30(10):1974–1983. https://doi.org/10.1377/hlthaff.2011.0700

    Article  Google Scholar 

  26. Robotin MC, George J (2014) Community-based hepatitis B screening: what works? Hepatol Int 8(4):478–492. https://doi.org/10.1007/s12072-014-9562-4

    Article  PubMed  PubMed Central  Google Scholar 

  27. Chandrasekar E, Song S, Johnson M et al (2016) A novel strategy to increase identification of African-born people with chronic hepatitis B virus infection in the Chicago Metropolitan Area, 2012–2014. Prev Chronic Dis 13:E118. https://doi.org/10.5888/pcd13.160162

    Article  PubMed  PubMed Central  Google Scholar 

  28. Shankar H, Blanas D, Bichoupan K et al (2016) A novel collaborative community-based hepatitis B Screening and linkage to care program for African immigrants. Clin Infect Dis 62(Suppl 4):S289–S297. https://doi.org/10.1093/cid/ciw090

    Article  PubMed  PubMed Central  Google Scholar 

  29. SAHL-E Keys for Health Literacy Measurement Tools (2014) Agency for Healthcare Research and Quality R, MD. https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy/sahl-e-keys.html. Accessed 8 Oct 2020

  30. Lee SY, Stucky BD, Lee JY, Rozier RG, Bender DE (2010) Short assessment of health literacy-Spanish and English: a comparable test of health literacy for Spanish and English speakers. Health Serv Res 45(4):1105–1120. https://doi.org/10.1111/j.1475-6773.2010.01119.x

    Article  PubMed  PubMed Central  Google Scholar 

  31. Guest G, Namey E, McKenna K (2017) How many focus groups are enough? Building and evidence base for nonprobability sample sizes. Field Methods 29(1):3–22. https://doi.org/10.1177/1525822X16639015

    Article  Google Scholar 

  32. Desrosiers A, St FS (2002) Treating Haitian patients: key cultural aspects. Am J Psychother 56(4):508–521. https://doi.org/10.1176/appi.psychotherapy.2002.56.4.508

    Article  PubMed  Google Scholar 

  33. Miller NL (2000) Haitian ethnomedical systems and biomedical practitioners: directions for clinicians. J Transcult Nurs 11(3):204–211. https://doi.org/10.1177/104365960001100307

    Article  CAS  PubMed  Google Scholar 

  34. https://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/hepatitis-b-virus-infection-screening-2014#consider. Accessed 8 Oct 2020

  35. Jemal A, Fedewa SA (2015) Prevalence of hepatitis C virus testing in cohorts born between 1945 and 1965 in the U.S. Am J Prev Med 48(5):e7–9. https://doi.org/10.1016/j.amepre.2014.12.002

    Article  PubMed  Google Scholar 

  36. Thompson MJ, Taylor VM, Jackson JC et al (2002) Hepatitis B knowledge and practices among Chinese American women in Seattle, Washington. J Cancer Educ 17(4):222–226. https://doi.org/10.1080/08858190209528842

    Article  PubMed  Google Scholar 

  37. Walters J, Sullivan A (2016) Early identification and linkage to care of foreign-born people with chronic hepatitis B virus infection, Multnomah County, Oregon, 2012–2014. Public Health Rep 131(Suppl 2):105–111. https://doi.org/10.1177/00333549161310S216

    Article  PubMed  PubMed Central  Google Scholar 

  38. https://www.census.gov/quickfacts/fact/table/miamidadecountyflorida/PST045218. Accessed 8 Oct 2020

  39. Davies J, Bukulatjpi S, Sharma S, Davis J, Johnston V (2014) "Only your blood can tell the story"–a qualitative research study using semi-structured interviews to explore the hepatitis B related knowledge, perceptions and experiences of remote dwelling Indigenous Australians and their health care providers in northern Australia. BMC Public Health 14:1233. https://doi.org/10.1186/1471-2458-14-1233

    Article  PubMed  PubMed Central  Google Scholar 

  40. Blanas DA, Nichols K, Bekele M et al (2015) Adapting the Andersen model to a francophone West African immigrant population: hepatitis B screening and linkage to care in New York City. J Community Health 40(1):175–184. https://doi.org/10.1007/s10900-014-9916-9

    Article  PubMed  Google Scholar 

  41. https://www.census.gov/content/dam/Census/library/publications/2018/demo/p60-264.pdf. Accessed 8 Oct 2020

  42. https://www.census.gov/quickfacts/fact/table/miamidadecountyflorida/POP060210. Accessed 8 Oct 2020

  43. https://www.nbcnews.com/news/asian-america/documentary-be-about-it-pushes-asian-american-community-talk-about-n576546. Accessed 8 Oct 2020

  44. https://www.hhs.gov/sites/default/files/National%2520Viral%2520Hepatitis%2520Action%2520Plan%25202017-2020.pdf. Accessed 8 Oct 2020

Download references

Acknowledgments

The authors acknowledge members of the Behavioral and Community-Based Research Shared Resource for assisting with study recruitment and moderation of focus groups.

Funding

The salary of the corresponding author is partially supported by a Diversity Supplement awarded by the National Institutes of Health (NIH) National Institute on Minority Health and Health Disparities (U01MD010614-01S1). The NIH was not involved in study design or in the collection, analysis or interpretation of data. Further, the NIH did not contribute to the writing of this manuscript or decision to submit for publication. Study procedures and patient incentives were made possible by the Sylvester Catchment Center Grant awarded to the corresponding author in 2016.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Patricia Jones.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 24 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Jones, P., Soler, J., Solle, N.S. et al. A mixed-methods approach to understanding perceptions of hepatitis B and hepatocellular carcinoma among ethnically diverse Black communities in South Florida. Cancer Causes Control 31, 1079–1091 (2020). https://doi.org/10.1007/s10552-020-01345-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10552-020-01345-6

Keywords

Navigation