Supplement: The Association Between Stigma and Wellbeing among Kaposi sarcoma and Lymphoma Patients in Malawi

Univ Of North Carolina Chapel Hill, Chapel Hill NC

Investigators

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Abstract

ABSTRACT This application is being submitted in response to the Notice of Special Interest (NOSI) identified as NOT-CA- 23-036. Stigma hampers the cancer care continuum, leading to delayed presentation to care, elevated morbidity and mortality, and reduced quality of life, particularly for patients with HIV-associated cancers. Qualitative research has elucidated the lived experience of stigma among cancer patients and the adverse impact of this stigma on mental health, self-isolation and engagement in care. However, there remains a gap in quantifying the prevalence and distribution of cancer-related stigma and its impact on health-related outcomes for patients with HIV-associated cancers. In response, we are currently developing and validating measures of enacted, anticipated, internalized stigma in Malawi (P30CA042014-33S5, Lead Kimani). With this supplement, the overall goal is to embed these new cancer stigma measures in existing cohorts of cancer patients in Malawi in order to better understand the prevalence and impact of cancer stigma in an African public cancer hospital. Our long-term goal is to use the results from this study to develop R01-level grants for targeted, multi-level interventions to address cancer stigma in Africa and ultimately improve cancer outcomes. In this proposed supplement, we will build on the parent award (U54CA254564, PI Damania) by leveraging the U54 prospective Kaposi sarcoma (KS) and lymphoma cohorts to explore the experience of cancer-related stigma, its impact on clinical outcomes, and its intersection with HIV stigma. Specifically, we will survey newly diagnosed adult patients with biopsy-proven KS or lymphoma, who are receiving or eligible for active cancer care, and enrolled in the parent study to measure cancer and HIV stigma and abstract cancer and patient data from the U54 routine study assessments. We will then quantify the prevalence of cancer stigma among KS and lymphoma patients in Malawi (Aim 1). We will additionally identify key cancer (characteristics, treatment and outcomes) and patient (quality of life, mental health, resilience) factors correlated with cancer stigma, and assess the intersectionality of HIV and cancer stigma (Aim 2). Ultimately, this innovative research will generate findings that will stimulate and strengthen global cancer stigma, build local capacity to conduct cancer stigma research, and lay the ground-work for future R01 proposals to implement and evaluated multi-level interventions that address cancer stigma in Africa and ultimately improve cancer care and outcomes.