Digestive Diseases and Sciences

, Volume 59, Issue 3, pp 681–686

Consequences of Perceived Stigma Among Patients with Cirrhosis

  • Valerie Vaughn-Sandler
  • Carey Sherman
  • Andrew Aronsohn
  • Michael L. Volk
Original Article

Abstract

Background

Among patients with diseases such as HIV, cancer and mental illness, perceived stigma is common and is linked to quality of life (QOL), depression and healthcare-seeking behavior.

Aims

We aimed to determine the prevalence and consequences of stigma in patients with cirrhosis.

Methods

A survey was developed and mailed to 300 patients with cirrhosis from a variety of etiologies. Among the 149 respondents, stigma was measured using a composite of previously validated scales. Correlates of stigma were measured using an a priori theoretical construct in order to investigate hypothesized consequences such as impaired social support, depression and reduction in healthcare-seeking behavior.

Results

Eighty-nine percent of respondents chose “agree” or “strongly agree” for at least one of the 18 stigma-related questions, indicating they felt stigmatized in at least one aspect of their lives. Patient factors associated with more perceived stigma on multivariable linear regression included younger age (p = 0.008), and hepatitis C (p = 0.001) or alcohol (p = 0.01) as the etiology of liver disease. Patients with higher levels of perceived stigma had less social support (r2 = 0.898, p < 0.001), were less likely to seek medical care (r2 = 0.108, p < 0.001), suffered from more depression (r2 = 0.17 p < 0.001) and had worse QOL (r2 = 0.175, p < 0.001).

Conclusions

Perceived stigma is common among patients with cirrhosis, and is associated with adverse attitudes and behaviors such as decreased healthcare-seeking behavior. Healthcare providers need to be aware of these perceptions and their potential impact on patients’ interaction with the medical system.

Keywords

Social support Health behavior Stigma Cirrhosis Quality of life 

References

  1. 1.
    Davis GL, Alter MJ, El-Serag H, Poynard T, Jennings LW. Aging of hepatitis C virus (HCV)-infected persons in the United States: a multiple cohort model of HCV prevalence and disease progression Gastroenterology. 2010;138:513–521, 521 e511–e516.Google Scholar
  2. 2.
    Davis GL, Roberts WL. The healthcare burden imposed by liver disease in aging baby boomers. Curr Gastroenterol Rep.. 2010;12:1–6.PubMedCrossRefGoogle Scholar
  3. 3.
    Gines P, Quintero E, Arroyo V, et al. Compensated cirrhosis: natural history and prognostic factors. Hepatology. 1987;7:122–128.PubMedCrossRefGoogle Scholar
  4. 4.
    Gralnek IM, Hays RD, Kilbourne A, et al. Development and evaluation of the liver disease quality of life instrument in persons with advanced, chronic liver disease–the LDQOL 1.0. Am J Gastroenterol.. 2000;95:3552–3565.PubMedGoogle Scholar
  5. 5.
    Spiegel BM, Younossi ZM, Hays RD, Revicki D, Robbins S, Kanwal F. Impact of hepatitis C on health related quality of life: a systematic review and quantitative assessment. Hepatology (Baltimore, Md.). 2005;41:790–800.CrossRefGoogle Scholar
  6. 6.
    Stigma. Oxford Dictionaries. City: Oxford University Press; 2010.Google Scholar
  7. 7.
    Golden J, Conroy RM, O’Dwyer AM, Golden D, Hardouin JB. Illness-related stigma, mood and adjustment to illness in persons with hepatitis C. Soc Sci Med. 1982;2006:3188–3198.Google Scholar
  8. 8.
    Drazic YN, Caltabiano ML. Chronic hepatitis B and C: exploring perceived stigma, disease information, and health-related quality of life. Nurs Health Sci. 2012. (Epub ahead of print). doi: 10.1111/nhs.12009.
  9. 9.
    Rodger AJ, Jolley D, Thompson SC, Lanigan A, Crofts N. The impact of diagnosis of hepatitis C virus on quality of life. Hepatology (Baltimore, Md.). 1999;30:1299–1301.CrossRefGoogle Scholar
  10. 10.
    Butt G, Paterson BL, McGuinness LK. Living with the stigma of hepatitis C. Western J Nurs Res. 2008;30:204–221 (discussion 222–233).Google Scholar
  11. 11.
    Grov C, Golub SA, Parsons JT, Brennan M, Karpiak SE. Loneliness and HIV-related stigma explain depression among older HIV-positive adults. AIDS Care. 2010;22:630–639.PubMedCentralPubMedCrossRefGoogle Scholar
  12. 12.
    Peretti-Watel P, Spire B, Pierret J, Lert F, Obadia Y. Management of HIV-related stigma and adherence to HAART: evidence from a large representative sample of outpatients attending French hospitals (ANRS-EN12-VESPA 2003). AIDS Care. 2006;18:254–261.PubMedCrossRefGoogle Scholar
  13. 13.
    Sayles JN, Wong MD, Kinsler JJ, Martins D, Cunningham WE. The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS. J Gen Intern Med. 2009;24:1101–1108.PubMedCentralPubMedCrossRefGoogle Scholar
  14. 14.
    Fife BL, Wright ER. The dimensionality of stigma: a comparison of its impact on the self of persons with HIV/AIDS and cancer. J Health Soc Behav. 2000;41:50–67.PubMedCrossRefGoogle Scholar
  15. 15.
    Lowe B, Kroenke K, Grafe K. Detecting and monitoring depression with a two-item questionnaire (PHQ-2). J Psychosom Res. 2005;58:163–171.PubMedCrossRefGoogle Scholar
  16. 16.
    Ware JE Jr. Scales for measuring general health perceptions. Health Serv Res. 1976;11:396–415.PubMedGoogle Scholar
  17. 17.
    Ediger JP, Walker JR, Graff L, et al. Predictors of medication adherence in inflammatory bowel disease. Am J Gastroenterol.. 2007;102:1417–1426.PubMedCrossRefGoogle Scholar
  18. 18.
    Bindman AB, Grumbach K, Osmond D, et al. Preventable hospitalizations and access to health care. JAMA. 1995;274:305–311.PubMedCrossRefGoogle Scholar
  19. 19.
    Norbeck JS, Lindsey AM, Carrieri VL. Further development of the Norbeck Social Support Questionnaire: normative data and validity testing. Nurs Res. 1983;32:4–9.PubMedCrossRefGoogle Scholar
  20. 20.
    Kanwal F, Hays RD, Kilbourne AM, Dulai GS, Gralnek IM. Are physician-derived disease severity indices associated with health-related quality of life in patients with end-stage liver disease? Am J Gastroenterol. 2004;99:1726–1732.PubMedCrossRefGoogle Scholar
  21. 21.
    Cronbach LJ. A case study of the split-half reliability coefficient. J Educ Psychol.. 1946;37:473–480.PubMedCrossRefGoogle Scholar
  22. 22.
    Neergaard MA, Olesen F, Andersen RS, Sondergaard J. Qualitative description—the poor cousin of health research? BMC Med Res Methodol. 2009;9:52.PubMedCentralPubMedCrossRefGoogle Scholar
  23. 23.
    Zickmund S, Hillis SL, Barnett MJ, Ippolito L, LaBrecque DR. Hepatitis C virus-infected patients report communication problems with physicians. Hepatology (Baltimore, Md.). 2004;39:999–1007.CrossRefGoogle Scholar
  24. 24.
    Album D, Westin S. Do diseases have a prestige hierarchy? A survey among physicians and medical students. Soc Sci Med. 1982;2008:182–188.Google Scholar
  25. 25.
    Schomerus G, Lucht M, Holzinger A, Matschinger H, Carta MG, Angermeyer MC. The stigma of alcohol dependence compared with other mental disorders: a review of population studies. Alcohol Alcohol (Oxford, Oxfordshire). 2011;46:105–112.CrossRefGoogle Scholar
  26. 26.
    Room R. Stigma, social inequality and alcohol and drug use. Drug Alcohol Rev.. 2005;24:143–155.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  • Valerie Vaughn-Sandler
    • 1
  • Carey Sherman
    • 2
  • Andrew Aronsohn
    • 3
  • Michael L. Volk
    • 4
  1. 1.Department of Internal MedicineUniversity of Michigan Medical SchoolAnn ArborUSA
  2. 2.Institute for Social ResearchUniversity of MichiganAnn ArborUSA
  3. 3.Center for Liver DiseasesUniversity of ChicagoChicagoUSA
  4. 4.Division of GastroenterologyUniversity of Michigan Medical SchoolAnn ArborUSA

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