Triangulating Evidence to Infer Pathways that Influence Ebola Virus Disease–Related Stigma and Clinical Findings among Survivors: An Observational Cohort Study

Author:

Kelly J. Daniel1234,Badio Moses14,Drew Clara5,Wilson Barthalomew4,Cooper Joseph B.4,Glayweon Meekie4,Johnson Kumblytee4,Moses J. Soka4,Gayedu-Dennis Dehkontee4,Torres Jacqueline M.1,Oldenburg Catherine E.1,Davidson Michelle C.12,Huang Chiung-Yu1,Steward Wayne T.6,Sneller Micheal C.47,Rutherford George W.12,Reilly Cavan45,Fallah Mosoka P.48,Weiser Sheri D.6

Affiliation:

1. 1Department of Epidemiology and Biostatistics, University of California, San Francisco, California;

2. 2Institute for Global Health Sciences, University of California, San Francisco, California;

3. 3F.I. Proctor Foundation, University of California, San Francisco, California;

4. 4U.S. Partnership for Research on Ebola Virus in Liberia (PREVAIL), Monrovia, Liberia;

5. 5Division of Biostatistics, University of Minnesota, Minneapolis, Minnesota;

6. 6Department of Medicine, University of California, San Francisco, California;

7. 7Laboratory of Immunoregulation, National Institute of Allergy and Infectious Diseases, Bethesda, Maryland;

8. 8A.M. Dogliotti College of Medicine, University of Liberia, Monrovia, Liberia

Abstract

ABSTRACT. Visible signs of disease can evoke stigma while stigma contributes to depression and mental illness, sometimes manifesting as somatic symptoms. We assessed these hypotheses among Ebola virus disease (EVD) survivors, some of whom experienced clinical sequelae. Ebola virus disease survivors in Liberia were enrolled in an observational cohort study starting in June 2015 with visits every 6 months. At baseline and 18 months later, a seven-item index of EVD-related stigma was administered. Clinical findings (self-reported symptoms and abnormal findings) were obtained at each visit. We applied the generalized estimating equation method to assess the bidirectional concurrent and lagged associations between clinical findings and stigma, adjusting for age, gender, educational level, referral to medical care, and HIV serostatus as confounders. When assessing the contribution of stigma to later clinical findings, we restricted clinical findings to five that were also considered somatic symptoms. Data were obtained from 859 EVD survivors. In concurrent longitudinal analyses, each additional clinical finding increased the adjusted odds of stigma by 18% (95% CI: 1.11, 1.25), particularly palpitations, muscle pain, joint pain, urinary frequency, and memory loss. In lagged associations, memory loss (adjusted odds ratio [AOR]: 4.6; 95% CI: 1.73, 12.36) and anorexia (AOR: 4.17; 95% CI: 1.82, 9.53) were associated with later stigma, but stigma was not significantly associated with later clinical findings. Stigma was associated with select symptoms, not abnormal objective findings. Lagged associations between symptoms and later stigma substantiate the possibility of a pathway related to visible symptoms identified by community members and leading to fear of contagion.

Publisher

American Society of Tropical Medicine and Hygiene

Subject

Virology,Infectious Diseases,Parasitology

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