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

摘要 本申请是为了响应被标识为NOT-CA的特别利益通知（NOSI）而提交的- 23-036.污名阻碍了癌症护理的连续性，导致延迟治疗， 发病率和死亡率以及生活质量下降，特别是对于患有HIV相关癌症的患者。 质性研究阐明了癌症患者的污名化生活经历及其不良影响， 这种耻辱感对心理健康、自我隔离和参与护理的影响。然而，在以下方面仍然存在差距： 量化癌症相关污名的流行和分布及其对健康相关结果的影响 艾滋病相关癌症患者的治疗方案。作为回应，我们目前正在制定和验证措施， 在马拉维实施、预期和内化的污名化（P30 CA 042014 - 33 S5，Lead Kimani）。有了这个补充， 总体目标是将这些新的癌症耻辱措施纳入马拉维现有的癌症患者队列， 为了更好地了解非洲公立癌症医院中癌症污名的流行和影响。 我们的长期目标是利用这项研究的结果，为有针对性的、多层次赠款 在非洲采取干预措施，解决癌症污名问题，并最终改善癌症结果。在此提出的 作为补充，我们将利用U 54的前景，在母公司奖（U 54 CA 254564，PI Damania）的基础上再接再厉 卡波西肉瘤（KS）和淋巴瘤队列，探讨癌症相关污名的经验，其影响， 临床结果及其与艾滋病毒污名的交叉点。具体来说，我们将调查新诊断的成人 正在接受或有资格接受积极癌症治疗的经活检证实的KS或淋巴瘤患者， 在母研究中，测量癌症和艾滋病毒的耻辱感，并从U 54中提取癌症和患者数据， 常规研究评估。然后，我们将量化KS和淋巴瘤中癌症污名的患病率， 马拉维的患者（目标1）。我们还将确定关键癌症（特征，治疗和结果） 和患者（生活质量，心理健康，恢复力）因素与癌症耻辱相关，并评估 艾滋病毒和癌症耻辱的交叉性（目标2）。最终，这项创新研究将产生一些发现， 这将刺激和加强全球癌症污名化，建设地方开展癌症污名化研究的能力， 并为未来R 01建议的实施和评估多层次干预奠定基础， 解决非洲的癌症污名问题，并最终改善癌症护理和结果。

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.