Advertisement

Internalized Stigma in Patients with Eosinophilic Gastrointestinal Disorders

  • L. Guadagnoli
  • T. H. TaftEmail author
Article
  • 11 Downloads

Abstract

The aim of the current study is to evaluate internalized stigma in individuals diagnosed with an eosinophilic gastrointestinal disorder (EGID) and its impact on psychosocial and health-related outcomes. The final study sample consisted of 149 patients with a self-reported EGID diagnosis for at least 6 months. Participants completed measures evaluating internalized stigma, disease-specific quality of life, emotional distress (anxiety, depression) and answered questions regarding healthcare utilization. Overall, increased internalized stigma was associated with decreased disease-specific quality of life, and increased anxiety and depression. In addition, participants with greater overall internalized stigma felt that treatments were less effective, and the internalized stigma subscales of alienation and discrimination were associated with increased outpatient visits and endoscopies, respectively. Providers working with EGID patients should assess for signs of internalized stigma, such as social withdrawal and alienation. Psychogastroenterology services that deliver evidence-based psychological interventions may reduce some of the negative impacts of internalized stigma.

Keywords

Eosinophilic gastrointestinal disorders Internalized stigma Health-related quality of life 

Notes

Funding

Livia Guadagnoli is supported by a training grant through the National Institute of Diabetes and Digestive and Kidney Diseases, USA (1T32DK101363).

Compliance with Ethical Standards

Conflict of interest

L. Guadagnoli and T.H. Taft declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

References

  1. Ballou, S., & Keefer, L. (2017). Psychological interventions for irritable bowel syndrome and inflammatory bowel diseases. Clinical and Translational Gastroenterology, 8(1), e214.  https://doi.org/10.1038/ctg.2016.69.CrossRefGoogle Scholar
  2. Bedell, A., Taft, T., Craven, M. R., Guadagnoli, L., Hirano, I., & Gonsalves, N. (2018). Impact on health-related quality of life in adults with eosinophilic gastritis and gastroenteritis: A qualitative assessment. Digestive Diseases and Science, 63(5), 1148–1157.  https://doi.org/10.1007/s10620-018-4978-7.CrossRefGoogle Scholar
  3. Boyd, J. E., Adler, E. P., Otilingam, P. G., & Peters, T. (2014). Internalized Stigma of Mental Illness (ISMI) scale: A multinational review. Comprehensive Psychiatry, 55(1), 221–231.  https://doi.org/10.1016/j.comppsych.2013.06.005.CrossRefGoogle Scholar
  4. Casellas, F., Rodrigo, L., Lucendo, A. J., Fernandez-Banares, F., Molina-Infante, J., Vivas, S., … Lopez-Vivancos, J. (2015). Benefit on health-related quality of life of adherence to gluten-free diet in adult patients with celiac disease. Revista Espanola De Enfermedades Digestivas, 107(4), 196–201.Google Scholar
  5. Casellas, F., Rodrigo, L., Vivancos, J. L., Riestra, S., Pantiga, C., Baudet, J. S., … Malagelada, J. R. (2008). Factors that impact health-related quality of life in adults with celiac disease: A multicenter study. World Journal of Gastroenterology: WJG, 14(1), 46–52.  https://doi.org/10.3748/wjg.14.46.CrossRefGoogle Scholar
  6. Corrigan, P. W. (1998). The impact of stigma on severe mental illness. Cognitive and Behavioral Practice, 5(2), 201–222.  https://doi.org/10.1016/S1077-7229(98)80006-0.CrossRefGoogle Scholar
  7. Dellon, E. S., Gonsalves, N., Hirano, I., Furuta, G. T., Liacouras, C. A., & Katzka, D. A. (2013). ACG clinical guideline: Evidenced based approach to the diagnosis and management of esophageal eosinophilia and eosinophilic esophagitis (EoE). The American Journal of Gastroenterology, 108(5), 679–692.  https://doi.org/10.1038/ajg.2013.71. (quiz 693).CrossRefGoogle Scholar
  8. Dellon, E. S., Jensen, E. T., Martin, C. F., Shaheen, N. J., & Kappelman, M. D. (2014). Prevalence of eosinophilic esophagitis in the United States. Clinical Gastroenterology and Hepatology, 12(4), 589–596 e581.  https://doi.org/10.1016/j.cgh.2013.09.008.CrossRefGoogle Scholar
  9. Gonsalves, N. (2018). Dietary therapy in Eosinophilic esophagitis. Gastrointestinal Endoscopy Clinics of North America, 28(1), 89–96.  https://doi.org/10.1016/j.giec.2017.07.008.CrossRefGoogle Scholar
  10. Gonsalves, N., Furuta, G. T., & Atkins, D. (2016). Eosinophilic gastrointestinal disorders affect more than just the esophagus. Journal of Pediatric Gastroenterology and Nutrition, 62(1), 1–2.  https://doi.org/10.1097/mpg.0000000000000993.CrossRefGoogle Scholar
  11. Gonsalves, N., Yang, G. Y., Doerfler, B., Ritz, S., Ditto, A. M., & Hirano, I. (2012). Elimination diet effectively treats eosinophilic esophagitis in adults; food reintroduction identifies causative factors. Gastroenterology, 142(7), 1451–1459.e1451.  https://doi.org/10.1053/j.gastro.2012.03.001.CrossRefGoogle Scholar
  12. Guadagnoli, L., Taft, T. H., & Keefer, L. (2017). Stigma perceptions in patients with eosinophilic gastrointestinal disorders. Diseases of Esophagus, 30(7), 1–8.  https://doi.org/10.1093/dote/dox014.CrossRefGoogle Scholar
  13. Hiremath, G., Kodroff, E., Strobel, M. J., Scott, M., Book, W., Reidy, C., … Dellon, E. S. (2018). Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care. Clinical and Research Hepatology Gastroenterology.  https://doi.org/10.1016/j.clinre.2018.03.003.Google Scholar
  14. Huggett, C., Birtel, M. D., Awenat, Y. F., Fleming, P., Wilkes, S., Williams, S., & Haddock, G. (2018). A qualitative study: Experiences of stigma by people with mental health problems. Psychology and Psychotherapy.  https://doi.org/10.1111/papt.12167.Google Scholar
  15. Jensen, E. T., Martin, C. F., Kappelman, M. D., & Dellon, E. S. (2016). Prevalence of eosinophilic gastritis, gastroenteritis, and colitis: Estimates from a national administrative database. Journal of Pediatric Gastroenterology and Nutrition, 62(1), 36–42.  https://doi.org/10.1097/mpg.0000000000000865.CrossRefGoogle Scholar
  16. Jones, E. E. (1984). Social stigma: The psychology of marked relationships. New York: WH Freeman.Google Scholar
  17. Jones, M. P., Bratten, J., & Keefer, L. (2007). Quality of life in patients with inflammatory bowel disease and irritable bowel syndrome differs between subjects recruited from clinic or the internet. The American Journal of Gastroenterology, 102, 2232.  https://doi.org/10.1111/j.1572-0241.2007.01444.x.CrossRefGoogle Scholar
  18. Keefer, L., Palsson, O. S., & Pandolfino, J. E. (2018). Best practice update: Incorporating psychogastroenterology into management of digestive disorders. Gastroenterology, 154(5), 1249–1257.  https://doi.org/10.1053/j.gastro.2018.01.045.CrossRefGoogle Scholar
  19. Lane, T. S., Armin, J., & Gordon, J. S. (2015). Online recruitment methods for web-based and mobile health studies: A review of the literature. Journal of Medical Internet Research, 17(7), e183.  https://doi.org/10.2196/jmir.4359.CrossRefGoogle Scholar
  20. Liacouras, C. A., Furuta, G. T., Hirano, I., Atkins, D., Attwood, S. E., Bonis, P. A., … Aceves, S. S. (2011). Eosinophilic esophagitis: Updated consensus recommendations for children and adults. The Journal of Allergy and Clinical Immunology, 128(1), 3–20e26.  https://doi.org/10.1016/j.jaci.2011.02.040 (quiz 21–22).CrossRefGoogle Scholar
  21. Mansoor, E., & Cooper, G. S. (2016). The 2010–2015 prevalence of eosinophilic esophagitis in the USA: A population-based study. Digestive Disease and Sciences, 61(10), 2928–2934.  https://doi.org/10.1007/s10620-016-4204-4.CrossRefGoogle Scholar
  22. Mansoor, E., Saleh, M. A., & Cooper, G. S. (2017). Prevalence of eosinophilic gastroenteritis and colitis in a population-based study, from 2012 to 2017. Clinical Gastroenterology and Hepatology, 15(11), 1733–1741.  https://doi.org/10.1016/j.cgh.2017.05.050.CrossRefGoogle Scholar
  23. Menard-Katcher, P., Marks, K. L., Liacouras, C. A., Spergel, J. M., Yang, Y. X., & Falk, G. W. (2013). The natural history of eosinophilic oesophagitis in the transition from childhood to adulthood. Alimentary Pharmacology & Therapeutics, 37(1), 114–121.  https://doi.org/10.1111/apt.12119.CrossRefGoogle Scholar
  24. Moawad, F. J., Dellon, E. S., Achem, S. R., Ljuldjuraj, T., Green, D. J., Maydonovitch, C. L., … Chehade, M. (2016). Effects of race and sex on features of eosinophilic esophagitis. Clinical Gastroenterology and Hepatology, 14(1), 23–30.  https://doi.org/10.1016/j.cgh.2015.08.034.CrossRefGoogle Scholar
  25. Pilkonis, P. A., Choi, S. W., Reise, S. P., Stover, A. M., Riley, W. T., & Cella, D. (2011). Item banks for measuring emotional distress from the patient-reported outcomes measurement information system (PROMIS(R)): Depression, anxiety, and anger. Assessment, 18(3), 263–283.  https://doi.org/10.1177/1073191111411667.CrossRefGoogle Scholar
  26. Quigley, E. M. (2016). Overlapping irritable bowel syndrome and inflammatory bowel disease: Less to this than meets the eye? Therapeutic Advances in Gastroenterology, 9(2), 199–212.  https://doi.org/10.1177/1756283x15621230.CrossRefGoogle Scholar
  27. Riehl, M. E., & Keefer, L. (2015). Hypnotherapy for esophageal disorders. American Journal of Clinical Hypnosis, 58(1), 22–33.  https://doi.org/10.1080/00029157.2015.1025355.CrossRefGoogle Scholar
  28. Riehl, M. E., Kinsinger, S., Kahrilas, P. J., Pandolfino, J. E., & Keefer, L. (2015). Role of a health psychologist in the management of functional esophageal complaints. Diseases of Esophagus, 28(5), 428–436.  https://doi.org/10.1111/dote.12219.CrossRefGoogle Scholar
  29. Ritsher, J. B., Otilingam, P. G., & Grajales, M. (2003). Internalized stigma of mental illness: Psychometric properties of a new measure. Psychiatry Research, 121(1), 31–49.CrossRefGoogle Scholar
  30. Rothenberg, M. E. (2004). Eosinophilic gastrointestinal disorders (EGID). The Journal of Allergy and Clinical Immunology, 113(1), 11–28.  https://doi.org/10.1016/j.jaci.2003.10.047. (quiz 29).CrossRefGoogle Scholar
  31. Seeman, M. (1959). On the meaning of alienation. American Sociological Review, 24(6), 783–791.  https://doi.org/10.2307/2088565.CrossRefGoogle Scholar
  32. Stern, E., Taft, T., Zalewski, A., Gonsalves, N., & Hirano, I. (2018). Prospective assessment of disease-specific quality of life in adults with eosinophilic esophagitis. Diseases of Esophagus.  https://doi.org/10.1093/dote/dox128.Google Scholar
  33. Taft, T. H., Ballou, S., & Keefer, L. (2013). A preliminary evaluation of internalized stigma and stigma resistance in inflammatory bowel disease. Journal of Health Psychology, 18(4), 451–460.  https://doi.org/10.1177/1359105312446768.CrossRefGoogle Scholar
  34. Taft, T. H., & Keefer, L. (2016). A systematic review of disease-related stigmatization in patients living with inflammatory bowel disease. Clinical and Experimental Gastroenterology, 9, 49–58.  https://doi.org/10.2147/CEG.S83533.CrossRefGoogle Scholar
  35. Taft, T. H., Kern, E., Keefer, L., Burstein, D., & Hirano, I. (2011). Qualitative assessment of patient-reported outcomes in adults with eosinophilic esophagitis. Journal of Clinical Gastroenterology, 45(9), 769–774.  https://doi.org/10.1097/MCG.0b013e3182166a5a.CrossRefGoogle Scholar
  36. Taft, T. H., Kern, E., Kwiatek, M. A., Hirano, I., Gonsalves, N., & Keefer, L. (2011). The adult eosinophilic oesophagitis quality of life questionnaire: A new measure of health-related quality of life. Alimentary Pharmacology & Therapeutics, 34(7), 790–798.  https://doi.org/10.1111/j.1365-2036.2011.04791.x.CrossRefGoogle Scholar
  37. Taft, T. H., Riehl, M. E., Dowjotas, K. L., & Keefer, L. (2014). Moving beyond perceptions: Internalized stigma in the irritable bowel syndrome. Neurogastroenterology & Motility, 26(7), 1026–1035.  https://doi.org/10.1111/nmo.12357.CrossRefGoogle Scholar
  38. Topolovec-Vranic, J., & Natarajan, K. (2016). The use of social media in recruitment for medical research studies: A scoping review. Journal of Medical Internet Research, 18(11), e286.  https://doi.org/10.2196/jmir.5698.CrossRefGoogle Scholar
  39. Waugh, O. C., Byrne, D. G., & Nicholas, M. K. (2014). Internalized stigma in people living with chronic pain. The Journal of Pain, 15(5), 550.e551–550.e510.  https://doi.org/10.1016/j.jpain.2014.02.001.CrossRefGoogle Scholar
  40. Zeng, C., Li, L., Hong, Y. A., Zhang, H., Babbitt, A. W., Liu, C., … Cai, W. (2018). A structural equation model of perceived and internalized stigma, depression, and suicidal status among people living with HIV/AIDS. BMC Public Health, 18(1), 138.  https://doi.org/10.1186/s12889-018-5053-1.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Division of Gastroenterology and HepatologyNorthwestern University Feinberg School of MedicineChicagoUSA

Personalised recommendations