Stigma in the Diagnosis and Treatment of HIV-associated Kaposi’s Sarcoma

Background

In high-income countries, HIV-associated Kaposi’s Sarcoma (KS) is rare and seldom deadly in the ART era. However, in Sub-Saharan Africa, KS is still common with a 2-year mortality of almost 50%. Stigma is known to impact cancer care engagement and may affect care of people with KS, who could experience co-occurring cancer, visible skin disease, and HIV stigma.

Methods

We used a convergent mixed-methods approach nested within a longitudinal study of HIV-associated KS in western Kenya. 117 participants completed an adapted 25-item Berger HIV Stigma Scale (score range=25-100; higher score=more stigma) assessing overall stigma, HIV stigma, cancer stigma, and skin-disease stigma every 16 weeks. A purposive sample of these participants completed 88 semi-structured interviews, which were coded using framework analysis with a priori Health Stigma and Discrimination Framework constructs and were triangulated with quantitative results.

Results

Among 117 participants, quantitative stigma scores were similar for HIV (Median: 28.00; IQR: 28.0, 34.0), cancer (Median: 28.0; IQR: 28.0, 34.8), and skin-disease stigma (Median: 28.0; IQR: 27.0, 34.0). Across interviews, stigma emerged as a major barrier to KS diagnosis and treatment, and HIV-related anticipated stigma was the most salient theme. Cancer and skin disease stigma were less prominent and linked to fatalism and the visibility of KS, respectively. In qualitative narratives, participants described resolution of KS contributing to reduced stigma over time; similarly, there was a statistically significant decline in overall stigma scores following KS diagnosis (adjusted β = -0.15, p <0.001).

Conclusion

Stigma, particularly HIV stigma, was an important barrier to diagnosis and treatment of KS. While less prominent, cancer and skin-disease stigma also contributed to the complex lived experience of people with KS. Addressing the layered experience of cancer and HIV stigmas, particularly anticipated stigma around HIV disclosure, could improve engagement with cancer care among people with HIV-associated cancers in Sub-Saharan Africa.