Pub Date : 2024-06-26DOI: 10.1093/jncimonographs/lgae004
Erin M Bange, Robert M Daly, Allison Lipitz-Snyderman, Gilad Kuperman, Fernanda C G Polubriaginof, Chris Liebertz, Sahil D Doshi, Kristina Stevanovic, Kiana Chan, Camila Bernal, Yasin Khadem Charvadeh, Yuan Chen, Susan Chimonas, Peter Stetson, Deborah Schrag, Michael J Morris, Katherine S Panageas
Modern cancer care is costly and logistically burdensome for patients and their families despite an expansion of technology and medical advances that create the opportunity for novel approaches to care. Therefore, there is a growing appreciation for the need to leverage these innovations to make cancer care more patient centered and convenient. The Memorial Sloan Kettering Making Telehealth Delivery of Cancer Care at Home Efficient and Safe Telehealth Research Center is a National Cancer Institute-designated and funded Telehealth Research Center of Excellence poised to generate the evidence necessary to inform the appropriate use of telehealth as a strategy to improve access to cancer services that are convenient for patients. The center will evaluate telehealth as a strategy to personalize cancer care delivery to ensure that it is not only safe and effective but also convenient and efficient. In this article, we outline this new center's research strategy, as well as highlight challenges that exist in further integrating telehealth into standard oncology practice based on early experiences.
尽管技术的发展和医学的进步为新颖的治疗方法创造了机会,但现代癌症治疗对患者及其家属来说成本高昂、后勤负担沉重。因此,人们越来越认识到需要利用这些创新技术,使癌症治疗更加以病人为中心,更加方便。纪念斯隆-凯特琳癌症研究中心(Memorial Sloan Kettering Making Telehealth Delivery of Cancer Care at Home Efficient and Safe Telehealth Research Center)是美国国立癌症研究所指定并资助的远程医疗卓越研究中心,该中心准备提供必要的证据,为适当使用远程医疗作为改善患者获得便捷癌症服务的策略提供信息。该中心将对远程医疗进行评估,将其作为提供个性化癌症治疗的一种策略,以确保远程医疗不仅安全有效,而且方便高效。在本文中,我们将概述这一新中心的研究策略,并根据早期经验强调在将远程医疗进一步整合到标准肿瘤实践中时所面临的挑战。
{"title":"Transforming patient-centered cancer care using telehealth: the MATCHES Center.","authors":"Erin M Bange, Robert M Daly, Allison Lipitz-Snyderman, Gilad Kuperman, Fernanda C G Polubriaginof, Chris Liebertz, Sahil D Doshi, Kristina Stevanovic, Kiana Chan, Camila Bernal, Yasin Khadem Charvadeh, Yuan Chen, Susan Chimonas, Peter Stetson, Deborah Schrag, Michael J Morris, Katherine S Panageas","doi":"10.1093/jncimonographs/lgae004","DOIUrl":"10.1093/jncimonographs/lgae004","url":null,"abstract":"<p><p>Modern cancer care is costly and logistically burdensome for patients and their families despite an expansion of technology and medical advances that create the opportunity for novel approaches to care. Therefore, there is a growing appreciation for the need to leverage these innovations to make cancer care more patient centered and convenient. The Memorial Sloan Kettering Making Telehealth Delivery of Cancer Care at Home Efficient and Safe Telehealth Research Center is a National Cancer Institute-designated and funded Telehealth Research Center of Excellence poised to generate the evidence necessary to inform the appropriate use of telehealth as a strategy to improve access to cancer services that are convenient for patients. The center will evaluate telehealth as a strategy to personalize cancer care delivery to ensure that it is not only safe and effective but also convenient and efficient. In this article, we outline this new center's research strategy, as well as highlight challenges that exist in further integrating telehealth into standard oncology practice based on early experiences.</p>","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 64","pages":"76-82"},"PeriodicalIF":0.0,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11207685/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141461178","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-26DOI: 10.1093/jncimonographs/lgae019
Leah L Zullig, Danil Makarov, Daniel Becker, Navid Dardashti, Ivonne Guzman, Michael J Kelley, Irina Melnic, Janeth Juarez Padilla, Sidney Rojas, Jerry Thomas, Christa Tumminello, Scott E Sherman
Background: In recent years the US health-care system has witnessed a substantial increase in telehealth use. Telehealth enhances health-care access and quality and may reduce costs. However, there is a concern that the shift from in-person to telehealth care delivery may differentially improve cancer care access and quality in certain clinical settings and for specific patient populations while potentially exacerbating disparities in care for others. Our National Cancer Institute-funded center, called Telehealth Research and Innovation for Veterans with Cancer (THRIVE), is focused on health equity for telehealth-delivered cancer care. We seek to understand how social determinants of telehealth-particularly race and ethnicity, poverty, and rurality-affect the use of telehealth.
Methods: THRIVE draws from the Health Disparities Research Framework and the Consolidated Framework for Implementation Research. THRIVE consists of multiple cores that work synergistically to assess and understand health equity for telehealth-delivered cancer care. These include the Administrative Core, Research and Methods Core, Clinical Practice Network, and Pragmatic Trial.
Results: As of October 2023, we identified and trained 5 THRIVE scholars, who are junior faculty beginning a research career. We have reviewed 20 potential pilot studies, funding 6. Additionally, in communication with our funders and advisory boards, we have adjusted our study design and analytic approach, ensuring feasibility while addressing our operational partners' needs.
Conclusions: THRIVE has several key strengths. First, the Veterans Health Administration's health-care system is large and diverse regarding health-care setting type and patient population. Second, we have access to longitudinal data, predating the COVID-19 pandemic, about telehealth use. Finally, equitable access to high-quality care for all veterans is a major tenet of the Veterans Health Administration health-care mission. As a result of these advantages, THRIVE can focus on isolating and evaluating the impact of social determinants of telehealth on equity in cancer care.
{"title":"Telehealth Research and Innovation for Veterans with Cancer: the THRIVE Center.","authors":"Leah L Zullig, Danil Makarov, Daniel Becker, Navid Dardashti, Ivonne Guzman, Michael J Kelley, Irina Melnic, Janeth Juarez Padilla, Sidney Rojas, Jerry Thomas, Christa Tumminello, Scott E Sherman","doi":"10.1093/jncimonographs/lgae019","DOIUrl":"10.1093/jncimonographs/lgae019","url":null,"abstract":"<p><strong>Background: </strong>In recent years the US health-care system has witnessed a substantial increase in telehealth use. Telehealth enhances health-care access and quality and may reduce costs. However, there is a concern that the shift from in-person to telehealth care delivery may differentially improve cancer care access and quality in certain clinical settings and for specific patient populations while potentially exacerbating disparities in care for others. Our National Cancer Institute-funded center, called Telehealth Research and Innovation for Veterans with Cancer (THRIVE), is focused on health equity for telehealth-delivered cancer care. We seek to understand how social determinants of telehealth-particularly race and ethnicity, poverty, and rurality-affect the use of telehealth.</p><p><strong>Methods: </strong>THRIVE draws from the Health Disparities Research Framework and the Consolidated Framework for Implementation Research. THRIVE consists of multiple cores that work synergistically to assess and understand health equity for telehealth-delivered cancer care. These include the Administrative Core, Research and Methods Core, Clinical Practice Network, and Pragmatic Trial.</p><p><strong>Results: </strong>As of October 2023, we identified and trained 5 THRIVE scholars, who are junior faculty beginning a research career. We have reviewed 20 potential pilot studies, funding 6. Additionally, in communication with our funders and advisory boards, we have adjusted our study design and analytic approach, ensuring feasibility while addressing our operational partners' needs.</p><p><strong>Conclusions: </strong>THRIVE has several key strengths. First, the Veterans Health Administration's health-care system is large and diverse regarding health-care setting type and patient population. Second, we have access to longitudinal data, predating the COVID-19 pandemic, about telehealth use. Finally, equitable access to high-quality care for all veterans is a major tenet of the Veterans Health Administration health-care mission. As a result of these advantages, THRIVE can focus on isolating and evaluating the impact of social determinants of telehealth on equity in cancer care.</p>","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 64","pages":"70-75"},"PeriodicalIF":0.0,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11207852/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141461177","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-26DOI: 10.1093/jncimonographs/lgae021
Katharine A Rendle, Andy S L Tan, Bonnie Spring, Erin M Bange, Allison Lipitz-Snyderman, Michael J Morris, Danil V Makarov, Robert Daly, Sofia F Garcia, Brian Hitsman, Olugbenga Ogedegbe, Siobhan Phillips, Scott E Sherman, Peter D Stetson, Anil Vachani, Jocelyn V Wainwright, Leah L Zullig, Justin E Bekelman
The COVID-19 pandemic placed a spotlight on the potential to dramatically increase the use of telehealth across the cancer care continuum, but whether and how telehealth can be implemented in practice in ways that reduce, rather than exacerbate, inequities are largely unknown. To help fill this critical gap in research and practice, we developed the Framework for Integrating Telehealth Equitably (FITE), a process and evaluation model designed to help guide equitable integration of telehealth into practice. In this manuscript, we present FITE and showcase how investigators across the National Cancer Institute's Telehealth Research Centers of Excellence are applying the framework in different ways to advance digital and health equity. By highlighting multilevel determinants of digital equity that span further than access alone, FITE highlights the complex and differential ways structural determinants restrict or enable digital equity at the individual and community level. As such, achieving digital equity will require strategies designed to not only support individual behavior but also change the broader context to ensure all patients and communities have the choice, opportunity, and resources to use telehealth across the cancer care continuum.
{"title":"A Framework for Integrating Telehealth Equitably across the cancer care continuum.","authors":"Katharine A Rendle, Andy S L Tan, Bonnie Spring, Erin M Bange, Allison Lipitz-Snyderman, Michael J Morris, Danil V Makarov, Robert Daly, Sofia F Garcia, Brian Hitsman, Olugbenga Ogedegbe, Siobhan Phillips, Scott E Sherman, Peter D Stetson, Anil Vachani, Jocelyn V Wainwright, Leah L Zullig, Justin E Bekelman","doi":"10.1093/jncimonographs/lgae021","DOIUrl":"10.1093/jncimonographs/lgae021","url":null,"abstract":"<p><p>The COVID-19 pandemic placed a spotlight on the potential to dramatically increase the use of telehealth across the cancer care continuum, but whether and how telehealth can be implemented in practice in ways that reduce, rather than exacerbate, inequities are largely unknown. To help fill this critical gap in research and practice, we developed the Framework for Integrating Telehealth Equitably (FITE), a process and evaluation model designed to help guide equitable integration of telehealth into practice. In this manuscript, we present FITE and showcase how investigators across the National Cancer Institute's Telehealth Research Centers of Excellence are applying the framework in different ways to advance digital and health equity. By highlighting multilevel determinants of digital equity that span further than access alone, FITE highlights the complex and differential ways structural determinants restrict or enable digital equity at the individual and community level. As such, achieving digital equity will require strategies designed to not only support individual behavior but also change the broader context to ensure all patients and communities have the choice, opportunity, and resources to use telehealth across the cancer care continuum.</p>","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 64","pages":"92-99"},"PeriodicalIF":0.0,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11207920/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141461172","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-26DOI: 10.1093/jncimonographs/lgae011
Jocelyn V Wainwright, Charu Aggarwal, Sarah Beucker, David W Dougherty, Peter E Gabriel, Linda A Jacobs, Jillian Kalman, Kristin A Linn, Anthony O Martella, Shivan J Mehta, Corinne M Rhodes, Megan Roy, Marilyn M Schapira, Lawrence N Shulman, Jennifer Steltz, Alisa J Stephens Shields, Andy S L Tan, Jeffrey C Thompson, Hannah Toneff, Richard C Wender, Sana Zeb, Katharine A Rendle, Anil Vachani, Justin E Bekelman
Drawing from insights from communication science and behavioral economics, the University of Pennsylvania Telehealth Research Center of Excellence (Penn TRACE) is designing and testing telehealth strategies with the potential to transform access to care, care quality, outcomes, health equity, and health-care efficiency across the cancer care continuum, with an emphasis on understanding mechanisms of action. Penn TRACE uses lung cancer care as an exemplar model for telehealth across the care continuum, from screening to treatment to survivorship. We bring together a diverse and interdisciplinary team of international experts and incorporate rapid-cycle approaches and mixed methods evaluation in all center projects. Our initiatives include a pragmatic sequential multiple assignment randomized trial to compare the effectiveness of telehealth strategies to increase shared decision-making for lung cancer screening and 2 pilot projects to test the effectiveness of telehealth to improve cancer care, identify multilevel mechanisms of action, and lay the foundation for future pragmatic trials. Penn TRACE aims to produce new fundamental knowledge and advance telehealth science in cancer care at Penn and nationally.
{"title":"University of Pennsylvania Telehealth Research Center of Excellence.","authors":"Jocelyn V Wainwright, Charu Aggarwal, Sarah Beucker, David W Dougherty, Peter E Gabriel, Linda A Jacobs, Jillian Kalman, Kristin A Linn, Anthony O Martella, Shivan J Mehta, Corinne M Rhodes, Megan Roy, Marilyn M Schapira, Lawrence N Shulman, Jennifer Steltz, Alisa J Stephens Shields, Andy S L Tan, Jeffrey C Thompson, Hannah Toneff, Richard C Wender, Sana Zeb, Katharine A Rendle, Anil Vachani, Justin E Bekelman","doi":"10.1093/jncimonographs/lgae011","DOIUrl":"10.1093/jncimonographs/lgae011","url":null,"abstract":"<p><p>Drawing from insights from communication science and behavioral economics, the University of Pennsylvania Telehealth Research Center of Excellence (Penn TRACE) is designing and testing telehealth strategies with the potential to transform access to care, care quality, outcomes, health equity, and health-care efficiency across the cancer care continuum, with an emphasis on understanding mechanisms of action. Penn TRACE uses lung cancer care as an exemplar model for telehealth across the care continuum, from screening to treatment to survivorship. We bring together a diverse and interdisciplinary team of international experts and incorporate rapid-cycle approaches and mixed methods evaluation in all center projects. Our initiatives include a pragmatic sequential multiple assignment randomized trial to compare the effectiveness of telehealth strategies to increase shared decision-making for lung cancer screening and 2 pilot projects to test the effectiveness of telehealth to improve cancer care, identify multilevel mechanisms of action, and lay the foundation for future pragmatic trials. Penn TRACE aims to produce new fundamental knowledge and advance telehealth science in cancer care at Penn and nationally.</p>","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 64","pages":"62-69"},"PeriodicalIF":0.0,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11207744/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141461179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-26DOI: 10.1093/jncimonographs/lgae016
Robin C Vanderpool, Abigail Muro, Roxanne E Jensen
{"title":"Advancing a telehealth and cancer control research agenda at the US National Cancer Institute.","authors":"Robin C Vanderpool, Abigail Muro, Roxanne E Jensen","doi":"10.1093/jncimonographs/lgae016","DOIUrl":"https://doi.org/10.1093/jncimonographs/lgae016","url":null,"abstract":"","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 64","pages":"51-54"},"PeriodicalIF":0.0,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141461173","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-26DOI: 10.1093/jncimonographs/lgae003
Roxanne E Jensen, Rachelle Brick, Joshua Medel, Priyanga Tuovinen, Paul B Jacobsen, Rebecca Hardesty, Robin C Vanderpool
Background: Telehealth use increased during the COVID-19 pandemic and remains a complementary source of cancer care delivery. Understanding research funding trends in cancer-related telehealth can highlight developments in this area of science and identify future opportunities.
Methods: Applications funded by the US National Cancer Institute (NCI) between fiscal years 2016 and 2022 and focused on synchronous patient-provider telehealth were analyzed for grant characteristics (eg, funding mechanism), cancer focus (eg, cancer type), and study features (eg, type of telehealth service). Of 106 grants identified initially, 60 were retained for coding after applying exclusion criteria.
Results: Almost three-quarters (73%) of telehealth grants were funded during fiscal years 2020-2022. Approximately 67% were funded through R01 or R37 mechanism and implemented as randomized controlled trials (63%). Overall, telehealth grants commonly focused on treatment (30%) and survivorship (43%); breast cancer (12%), hematologic malignancies (10%), and multiple cancer sites (27%); and health disparity populations (ie, minorities, rural residents) (73%). Both audio and video telehealth were common (65%), as well as accompanying mHealth apps (20%). Telehealth services centered on psychosocial care, self-management, and supportive care (88%); interventions were commonly delivered by mental health professionals (30%).
Conclusion: NCI has observed an increase in funded synchronous patient-provider telehealth grants. Trends indicate an evolution of awards that have expanded across the cancer control continuum, applied rigorous study designs, incorporated additional digital technologies, and focused on populations recognized for disparate cancer outcomes. As telehealth is integrated into routine cancer care delivery, additional research evidence will be needed to inform clinical practice.
{"title":"National Cancer Institute-funded grants focused on synchronous telehealth cancer care delivery: a portfolio analysis.","authors":"Roxanne E Jensen, Rachelle Brick, Joshua Medel, Priyanga Tuovinen, Paul B Jacobsen, Rebecca Hardesty, Robin C Vanderpool","doi":"10.1093/jncimonographs/lgae003","DOIUrl":"10.1093/jncimonographs/lgae003","url":null,"abstract":"<p><strong>Background: </strong>Telehealth use increased during the COVID-19 pandemic and remains a complementary source of cancer care delivery. Understanding research funding trends in cancer-related telehealth can highlight developments in this area of science and identify future opportunities.</p><p><strong>Methods: </strong>Applications funded by the US National Cancer Institute (NCI) between fiscal years 2016 and 2022 and focused on synchronous patient-provider telehealth were analyzed for grant characteristics (eg, funding mechanism), cancer focus (eg, cancer type), and study features (eg, type of telehealth service). Of 106 grants identified initially, 60 were retained for coding after applying exclusion criteria.</p><p><strong>Results: </strong>Almost three-quarters (73%) of telehealth grants were funded during fiscal years 2020-2022. Approximately 67% were funded through R01 or R37 mechanism and implemented as randomized controlled trials (63%). Overall, telehealth grants commonly focused on treatment (30%) and survivorship (43%); breast cancer (12%), hematologic malignancies (10%), and multiple cancer sites (27%); and health disparity populations (ie, minorities, rural residents) (73%). Both audio and video telehealth were common (65%), as well as accompanying mHealth apps (20%). Telehealth services centered on psychosocial care, self-management, and supportive care (88%); interventions were commonly delivered by mental health professionals (30%).</p><p><strong>Conclusion: </strong>NCI has observed an increase in funded synchronous patient-provider telehealth grants. Trends indicate an evolution of awards that have expanded across the cancer control continuum, applied rigorous study designs, incorporated additional digital technologies, and focused on populations recognized for disparate cancer outcomes. As telehealth is integrated into routine cancer care delivery, additional research evidence will be needed to inform clinical practice.</p>","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 64","pages":"55-61"},"PeriodicalIF":0.0,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11207831/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141461174","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-05DOI: 10.1093/jncimonographs/lgae014
Sonali Elizabeth Johnson, Mélanie Samson
Cancer is a stigmatized disease in many countries that impacts the quality of life and mental health of people affected by cancer. This commentary examines some dimensions of cancer stigma and has been developed based on insights from participants in a Union for International Cancer Control program dedicated to cancer patient organizations in low- and middle-income countries. Aimed at program managers and policy makers, this commentary highlights the importance of developing strategies to reduce cancer stigma in cancer control programs in different contexts, working closely with community-based civil society organizations and those with lived experience of cancer to understand, evaluate, and take action regarding the impact of cancer stigma on health-seeking behavior and patients' quality of life.
{"title":"Cancer stigma: the need for policy and programmatic action.","authors":"Sonali Elizabeth Johnson, Mélanie Samson","doi":"10.1093/jncimonographs/lgae014","DOIUrl":"10.1093/jncimonographs/lgae014","url":null,"abstract":"<p><p>Cancer is a stigmatized disease in many countries that impacts the quality of life and mental health of people affected by cancer. This commentary examines some dimensions of cancer stigma and has been developed based on insights from participants in a Union for International Cancer Control program dedicated to cancer patient organizations in low- and middle-income countries. Aimed at program managers and policy makers, this commentary highlights the importance of developing strategies to reduce cancer stigma in cancer control programs in different contexts, working closely with community-based civil society organizations and those with lived experience of cancer to understand, evaluate, and take action regarding the impact of cancer stigma on health-seeking behavior and patients' quality of life.</p>","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 63","pages":"45-50"},"PeriodicalIF":0.0,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11151329/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141249148","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-05DOI: 10.1093/jncimonographs/lgae002
Evan L Eschliman, Dung Hoang, Nasim Khoshnam, Vivian Ye, Haruka Kokaze, Yatong Ji, Yining Zhong, Aditi Morumganti, Wenyu Xi, Sijia Huang, Karen Choe, Ohemaa B Poku, Gloria Alvarez, Trang Nguyen, Nam Truong Nguyen, Donna Shelley, Lawrence H Yang
Background: Vietnam is experiencing a growing burden of cancer, including among people living with HIV. Stigma acts as a sociocultural barrier to the prevention and treatment of both conditions. This study investigates how cultural notions of "respected personhood" (or "what matters most") influence manifestations of HIV-related stigma and cancer stigma in Hanoi, Vietnam.
Methods: Thirty in-depth interviews were conducted with people living with HIV in Hanoi, Vietnam. Transcripts were thematically coded via a directed content analysis using the What Matters Most conceptual framework. Coding was done individually and discussed in pairs, and any discrepancies were reconciled in full-team meetings.
Results: Analyses elucidated that having chữ tín-a value reflecting social involvement, conscientiousness, and trustworthiness-and being successful (eg, in career, academics, or one's personal life) are characteristics of respected people in this local cultural context. Living with HIV and having cancer were seen as stigmatized and interfering with these values and capabilities. Intersectional stigma toward having both conditions was seen to interplay with these values in some ways that had distinctions compared with stigma toward either condition alone. Participants also articulated how cultural values like chữ tín are broadly protective against stigmatization and how getting treatment and maintaining employment can help individuals resist stigmatization's most acute impacts.
Conclusions: HIV-related and cancer stigma each interfere with important cultural values and capabilities in Vietnam. Understanding these cultural manifestations of these stigmas separately and intersectionally can allow for greater ability to measure and respond to these stigmas through culturally tailored intervention.
{"title":"A \"What Matters Most\" approach to investigating intersectional stigma toward HIV and cancer in Hanoi, Vietnam.","authors":"Evan L Eschliman, Dung Hoang, Nasim Khoshnam, Vivian Ye, Haruka Kokaze, Yatong Ji, Yining Zhong, Aditi Morumganti, Wenyu Xi, Sijia Huang, Karen Choe, Ohemaa B Poku, Gloria Alvarez, Trang Nguyen, Nam Truong Nguyen, Donna Shelley, Lawrence H Yang","doi":"10.1093/jncimonographs/lgae002","DOIUrl":"10.1093/jncimonographs/lgae002","url":null,"abstract":"<p><strong>Background: </strong>Vietnam is experiencing a growing burden of cancer, including among people living with HIV. Stigma acts as a sociocultural barrier to the prevention and treatment of both conditions. This study investigates how cultural notions of \"respected personhood\" (or \"what matters most\") influence manifestations of HIV-related stigma and cancer stigma in Hanoi, Vietnam.</p><p><strong>Methods: </strong>Thirty in-depth interviews were conducted with people living with HIV in Hanoi, Vietnam. Transcripts were thematically coded via a directed content analysis using the What Matters Most conceptual framework. Coding was done individually and discussed in pairs, and any discrepancies were reconciled in full-team meetings.</p><p><strong>Results: </strong>Analyses elucidated that having chữ tín-a value reflecting social involvement, conscientiousness, and trustworthiness-and being successful (eg, in career, academics, or one's personal life) are characteristics of respected people in this local cultural context. Living with HIV and having cancer were seen as stigmatized and interfering with these values and capabilities. Intersectional stigma toward having both conditions was seen to interplay with these values in some ways that had distinctions compared with stigma toward either condition alone. Participants also articulated how cultural values like chữ tín are broadly protective against stigmatization and how getting treatment and maintaining employment can help individuals resist stigmatization's most acute impacts.</p><p><strong>Conclusions: </strong>HIV-related and cancer stigma each interfere with important cultural values and capabilities in Vietnam. Understanding these cultural manifestations of these stigmas separately and intersectionally can allow for greater ability to measure and respond to these stigmas through culturally tailored intervention.</p>","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 63","pages":"11-19"},"PeriodicalIF":0.0,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11151327/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141249146","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-05DOI: 10.1093/jncimonographs/lgae009
Kathryn Heley, Vidya Vedham, Robin C Vanderpool
{"title":"The global landscape of cancer stigma research and practice: perspectives, measures, interventions, and actions for change.","authors":"Kathryn Heley, Vidya Vedham, Robin C Vanderpool","doi":"10.1093/jncimonographs/lgae009","DOIUrl":"https://doi.org/10.1093/jncimonographs/lgae009","url":null,"abstract":"","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 63","pages":"1-3"},"PeriodicalIF":0.0,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141249153","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-05DOI: 10.1093/jncimonographs/lgae010
Jamie L Studts, Catherine M Deffendall, Shelby L McCubbin, Heidi A Hamann, Kaitlyn Hoover, Whitney M Brymwitt, Timothy J Williamson
Background: Innovations in lung cancer control and care have started to transform the landscape of lung cancer outcomes, but lung cancer stigma and biases have been implicated as a deterrent to realizing the promise of these innovations. Research has documented lung cancer stigma among the general public and lung cancer survivors (self-blame), as well as clinicians across many disciplines. However, studies have not explored lung cancer stigma in health-care trainees. These data seek to address that gap and inform efforts to prevent the emergence or mitigate the presence of lung cancer stigma among future clinicians.
Methods: Using clinical vignettes and a 2x2 factorial design, this investigation evaluated the impact of a history of smoking (yes vs no) and cancer diagnosis (lung vs colorectal) on perceptions of the described patient among 2 groups of preclinical health-care trainees (medical = 94 and nursing = 138). A charitable giving paradigm also asked participants to donate provided funds to 1 of 2 cancer advocacy organizations: one serving the lung cancer community and one serving the colorectal cancer community.
Results: In study 1, results revealed a consistent pattern of statistically significant and medium to large effect size differences regarding stigmatized perceptions (eg, higher stigmatizing behavior, increased pity, greater anger, and less helping) for individuals with a history of smoking but no reliable differences regarding cancer diagnosis. Analysis of data from nursing trainees in study 2 showed a similar pattern of statistically significant and medium to large effects pertaining to stigma behavior and perceptions of individuals who had a history of smoking depicted in the vignettes. The charitable giving paradigm did not identify any reliable difference between the groups in either study.
Conclusions: Findings revealed a consistent pattern of health-care trainee perceptions that varied by smoking status but much less evidence that the cancer diagnosis contributed to different perceptions. This suggests that efforts to integrate consideration of stigma and biases in health-care training needs to adopt an approach that seeks to mitigate or eliminate stigmatizing perceptions and behaviors toward individuals with a history of smoking.
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