Improving Access to Cancer Care in the HIV Population: Qualitative Research to Identify Barriers to Care

Abstract

Purpose: People living with HIV are less likely to receive cancer treatment and have worse cancer-specific survival, yet underlying drivers of this disparity have minimally been explored. We investigated cancer care barriers from the perspective of patients living with HIV and cancer (PLWHC) to inform future interventions, reduce disparities, and improve outcomes. Methods: We conducted in-depth semistructured interviews with 27 PLWHC. The interview guide explored perceptions of the cancer care experience, treatment decision making, and barriers to cancer treatment. Interview data were analyzed using the constant comparative method of qualitative analysis. Results: Study participants were predominantly men ( n =22, 81%) with a median age of 56 years and median annual income of $24,000. Among those who experienced challenges with cancer treatment adherence, barriers included debilitating side effects of cancer treatment, stigma surrounding HIV, issues with coping and mental health, the financial burden of cancer care, and challenges with care accessibility. Despite these challenges, participants indicated that their past experiences of coping with HIV had prepared them to accept and address their cancer diagnosis. Resiliency and social support were key facilitators for cancer treatment adherence. Conclusion: This qualitative study of PLWHC in the United States found that a cancer diagnosis created a substantial added stress to an already challenging situation. Health- and stigma-related stressors impacted patients' ability to fully complete cancer treatment as prescribed. There is a need for improved provider communication and mental health support for PLWHC to ensure equitable access to and completion of cancer treatment.

Experience of chronic noncommunicable disease in people living with HIV: a systematic review and meta-aggregation of qualitative studies

“…After the removal of duplicates and the screening of the titles and abstracts, 94 studies were selected for full-text screening. In total, 14 eligible studies were included in the meta-synthesis [17,18,[21][22][23][24][25][26][27][28][29][30][31][32].…”

“…The studies were conducted in the following five different countries: the United States (n = 6) [14,22,26,28,31,32], South Africa (n = 5) [18,21,23,25,29], Canada (n = 1) [30], Malawi (n = 1) [24], and Ghana (n = 1) [27]. Six studies used phenomenological designs [17, 24-27, 31, 32], and four used descriptive designs [22,23,28,30]. The other designs included case studies [18], ethnographic studies [21], and mixed method studies [29].…”

A Qualitative Examination of Perceived Stigma and its Sources Among Adolescents Living With HIV in Western Kenya

“…Previous studies with PLWH have demonstrated that perceived stigma—defined as a persistent fear of stigmatization or discrimination 5 —negatively impacts their clinical outcomes. 22 , 23 Studies have demonstrated that perceived stigma was associated with delayed initiation and presentation to HIV care and negative impacts on long-term retention in care and ART adherence. 24 - 26 For many adults living with HIV, perceived stigma manifests as fear of accidental disclosure of their status and a secondary loss of resources.…”

Palliative Care Use Among People Living With HIV and Cancer: An Analysis of the National Cancer Database (2004-2018)

“…2,47,48 The benefits of early intervention with PC among patients with cancer were first demonstrated among patients with metastatic non–small-cell lung cancer through a randomized controlled trial, 37 which reported increased survival among patients who received PC. Given the absence of guidelines during the study period, numerous provider-level factors, including stigma associated with treating patients with HIV, 3 likely contributed to lowering PC use among patients with stage IV lung cancer. Provider perceptions regarding the role of HIV in treatment adherence and efficacy and comfort level with discussing adverse cancer treatment effects and prognosis have been found to negatively affect likelihood of offering standard curative treatment to PLWH and cancer.…”

“…8 From the patient perspective, qualitative interviews with cancer patients with HIV have revealed that common barriers to access to cancer care include stigma surrounding HIV, challenges with care accessibility, such as parking or transportation to their cancer treatment facility, and issues coping with mental health. 3 To address these documented barriers, recent National Comprehensive Cancer Network (NCCN) guidelines have been developed to recommend that PLWH should be offered the same therapy as cancer patients without HIV. 9 In addition to guidelines regarding curative therapy, the HIV and cancer NCCN guidelines included recommendations toward the use of palliative care (PC) among PLWH to ensure equitable delivery of supportive care during cancer treatment regardless of HIV status.…”