Articles in Peer-Reviewed Journals
The next step for global adolescent and young adult oncology: Development of a core patient-centered outcome set. Journal of the National Cancer Institute (2022)
by Husson, O., Reeve, B. R., Darlington, A. S., Cheung, C. K., Sodergren, S., van der Graaf, W.,
& Salsman, J.M.
The relatively small number of cancers in the adolescent and young adult (AYA) age group, those aged 15-39 years, does not appropriately reflect the personal and societal costs of cancer in this population, as reflected in the potential years of life lost or saved, the decreased productivity and health-related quality of life due to the impact of the disease during formative years, and long-term complications or disabilities. Improvements in care and outcomes for AYAs with cancer require collaboration among different stakeholders at different levels (patients, caregivers, health-care professionals, researchers, industry, and policymakers). Development of a Core Outcome Set (COS), an agreed minimum set of outcomes that should be measured globally in research and routine clinical practice-specifically for AYAs with cancer-with outcomes that are well defined based on the perspective of those who are affected and assessed with validated measures, is urgently required. A globally implemented COS for AYAs with cancer will facilitate better pooling of research data and the implementation of high-quality health-care registries, which by benchmarking not only nationally but also internationally, may ultimately improve the value of the care given to these underserved young cancer patients. We reflect on the need to develop a COS for AYAs with cancer, the arenas of application, and the challenges of implementing an age-specific COS in research and clinical practice.
A thin line between helpful and harmful Internet usage: Embodied research on Internet experiences among adolescent and young adult cancer patients. Journal of Adolescent and Young Adult Oncology (2021)
by Cheung, C. K., Norlander, M. G., Vest, A. N., Thomas, B. N. & Zebrack, B. J.
The purpose of this study was to expand upon findings from a prior Delphi study of adolescent and young adults’ (AYAs’) preferences for cancer resources. Utilizing an embodied approach, this study intended to elucidate a deeper and nuanced understanding of the expressed benefits and risks of engaging in cancer-related online interactions. Using Gale et al.’s framework method for qualitative, multidisciplinary health research and Thanem and Knights’s embodied research methods for the social sciences, an investigative team of embodied researchers (AYA cancer patients turned researchers) conducted semi structured in-depth interviews with AYA cancer patients (n = 10) diagnosed between ages 15 and 39 years. Findings impart evidence on AYAs’ needs for internet-based content at the time of cancer diagnosis, use of the internet to fulfill cancer-related needs, perception of gaps in online cancer resources, and advice to other AYA cancer patients accessing internet-based information and support.
A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy. Future Oncology (2021)
by Cheung, C. K., Tucker-Seeley, R., Davies, S., Gilman, M., Miller, K. A., Lopes, G., Betz, G. D., Katerere-Virima, T., Helbling, L. E., Thomas, B. N., & Lewis, M. A.
Amidst the concurrent global crises of coronavirus disease 2019 (COVID-19), uprisings against Anti-Black racism and police brutality, as well as anti-Asian racism and violence, the field of medicine found itself simultaneously called upon to respond as essential workers in the public health devastation of COVID-19, and as representatives of healthcare institutions wrought with the impacts of systemic racism. Clinicians, researchers, and advocates in adolescent and young adult (AYA) oncology, must come together in authentic activism to begin the work of creating structural change to advance antiracist approaches to patient engagement in AYA oncology research and advocacy. Critical review of existing practices is needed to ensure that ethical and effective research methods are employed when engaging with racial and ethnic minority AYA patients with cancer, who may be particularly vulnerable and exploited in the current context.
Capturing the financial hardship of cancer in military adolescent and young adult patients: A conceptual framework. Journal of Psychosocial Oncology (2021)
by Cheung, C. K., Nishimoto, P. W., Katerere-Virima, T., Helbling, L. E., Thomas, B. N., & Tucker-Seeley, R.
Examine whether an existing conceptual framework for understanding financial hardship following a cancer diagnosis captures experiences among military adolescent and young adult (AYA) patients. Investigators conducted focus groups and key informant interviews (n = 24) with active-duty military AYA cancer patients, their spouses, cancer care providers, and commanders at a military medical center and military post. Content analysis and thematic abstraction revealed that military AYA cancer patients’ experiences of financial hardship occur within material, psychosocial, and behavioral domains that are situated within the contextual influences of AYA development and military culture. Subsequently, investigators constructed an expanded conceptual framework for understanding the financial hardship of cancer to capture these contexts.
Centering black swans: Embodied research in adolescent and young adult oncology. Oppositional Conversations (2021)
by Cheung, C. K. & Simmons, C. D.
The purpose of this study is to counter criticism that calls into question the trustworthiness of embodied inquiry in social science and medicine. We do so by introducing our embodied research approach through two in-depth case examples focusing on experiences of bias and disparities in treatment and outcomes. Our rigorous and transparent methodology demonstrates the empiricism of embodiment in the process of research topic selection and prioritization within two psychosocial domains in AYA oncology. The psychosocial domains of race and gender are especially salient to the experience of bias and disparities among BIPOC patients. In addition to modeling the practice of embodiment, we discuss the benefits and risks of our approach through our case examples. We propose how our results might inform the advancement of embodied research methods and AYA oncology.
Persistent disparity: Socioeconomic deprivation and cancer outcomes in patients treated in clinical trials. Journal of Clinical Oncology (2021)
by Unger, J. M., Moseley, A. B., Cheung, C. K., Osarogiagbon, R. U., Symington, B., Ramsey, S. D., & Hershman, D. L.
Patients with cancer living in socioeconomically disadvantaged areas have worse cancer outcomes. The association between socioeconomic deprivation and outcomes among patients with cancer participating in clinical trials has not been systematically examined. We examined survival outcomes for patients enrolled in phase III and large phase II clinical trials for major cancers conducted by the SWOG Cancer Research Network from 1985 to 2012. Socioeconomic deprivation was measured using trial participants’ residential zip codes linked to the Area Deprivation Index (ADI). We examined 41,109 patients from 55 trials comprising 24 cancer histology and stage-specific
Systematic review of financial burden assessment in cancer: Evaluation of measures and utility among adolescents and young adults and caregivers. Cancer (2021)
by Salsman, J. M., Danhauer, S. C., Moore, J. B., Ip, E. H., McLouth, L. E., Nightingale, C. L., Cheung, C. K., Bingen, K. M., Tucker‐Seeley, R. D., Little‐Greene, D., Howard, D. S., & Reeve, B. B.
The cost of cancer care is rising and represents a stressor that has significant and lasting effects on quality of life for many patients and caregivers. Adolescents and young adults (AYAs) with cancer are particularly vulnerable. The goal of this systematic review is to summarize and evaluate measures of financial burden in cancer and describe their potential utility among AYAs and their caregivers. We searched PubMed, Embase, Cochrane Library, CINAHL and PsychINFO for concepts involving financial burden, cancer, and self-reported questionnaires, limiting the results to the English language. We screened 7,250 abstracts and 720 full-text articles to identify relevant articles on financial burden. Of those, 86 met our inclusion criteria. Several measures assess the financial burden of cancer. They were primarily designed and evaluated in adult patient populations with little focus on AYAs or caregivers, despite their increased risk of financial burden.
The impact of a cancer diagnosis on sibling relationships from childhood through young adulthood: A systematic review. Journal of Family Social Work (2020)
by Cheung, C. K., Acquati, C., Smith, E., Katerere-Virima, T., and Helbling, L.
Cancer is a serious, life-threatening illness that impacts the entire family system, with implications for patients themselves, their siblings, parents, and extended family. Given increasing identification of siblings as uniquely important and enduring fixtures in each other’s lives, investigation into the influence of cancer on sibling relationships is warranted. The current systematic review pursued the question: What interpersonal factors in sibling relationships are affected by coping with a cancer diagnosis from childhood through young adulthood? In September 2019, a systematic search of extant literature was conducted, from inception to present, resulting in nine studies meeting inclusion criteria. Results were sorted into psychosocial factors and family factors.
Young cancer patients as future leaders in the global knowledge economy. Cancer Therapy and Oncology International Journal (2018)
by Cheung, C. K.
In December 2017, the second Global Adolescent and Young Adult (AYA) Cancer Congress (www.ayaglobalcancercongress.com) convened in Atlanta, GA, showcasing a sizeable and ever-growing body of scientific literature illuminating the unique medical and psychosocial issues of cancer diagnosed during the adolescent and young adult (AYA) period between 15 to 39 years old. Among the host of innovations in AYA oncology, I presented an argument to promote ’embodied’ AYA cancer researchers as future leaders of the Global Knowledge Economy, with qualified mentorship as key to their advancement. Embodied AYA cancer researchers are academic entrepreneurs, rarefied assets primed to make meaningful contributions in The Global University and lead the cancer research enterprise with patient wisdom.
Adolescent and young adult patients. Psycho-oncology (4th edition). New York, NY: Oxford University Press. (2021)
by Cheung, C.K., Santacroce, S. J., Zebrack, B.J.
Adolescent and young adult (AYA) cancer patients are beneficiaries of technological advances, who are now living long enough to experience medical late effects and psychosocial challenges, as well as opportunities for personal growth and transformation, resulting from exposures to curative and life-extending biomedical innovation. This chapter first defines the AYA population and summarizes trends in the epidemiology, etiology, and prognosis of cancer in this population. Second, it describes prominent AYA developmental characteristics. Third, it characterizes the context in which AYAs experience a cancer diagnosis and its care. Fourth and finally, it discusses prevalent psychosocial developmental challenges for AYA cancer patients, including key clinical issues unique to this age-defined population, and what is considered reasonable recommendations for assessment, information, and intervention in psycho-oncology care to promote their health and well-being.
Adolescents and young adults living with serious illness. Oxford Textbook of Palliative Social Work (2nd edition). New York, NY: Oxford University Press (2022)
by Cheung, C.K. & Wiener, L.
Adolescents and young adults (AYAs) living with serious illness are uniquely challenged by the conundrum of possessing the cognitive capacity to understand the gravity of their illness, yet lacking skills to cope with that understanding. They are tasked with navigating transitions from childhood to adulthood that are already characterized by tremendous growth, change, and heightened vulnerability to stress. AYAs benefit from early introduction of an integrated approach to palliative social work—combining knowledge and strategies from pediatric and adult settings, with uniquely AYA interventions that reflect their sociodemographic and contextual complexity. In this chapter, we define and characterize the AYA patient care population; describe the significance of palliative social work; highlight clinical strategies and skills for working with AYAs; detail a developmentally appropriate approach to advance care planning; and conclude by discussing self-care practices for palliative social workers interested in sustaining a rewarding career, infused with personal and professional growth.
Hodgkin’s lymphoma: Struggles of a young adult with cancer with Dr. Christabel Cheung: Part 2. The Bloodline with Leukemia and Lymphoma Society (2021)
by Cheung, C.K. & Leukemia and Lymphoma Society
In this episode, Christabel talks about her extraordinary struggles as a young adult with cancer, such as living alone without family support and having high healthcare costs. She also delves into the health disparities, racism and racial insensitivity that BIPOC (Black, Indigenous, People of Color) patients experience
Hodgkin’s lymphoma: Struggles of a young adult with cancer with Dr. Christabel Cheung: Part 1. The Bloodline with Leukemia and Lymphoma Society (2021)
by Cheung, C.K. & Leukemia and Lymphoma Society
Dr. Christabel Cheung, a two-time Hodgkin Lymphoma Survivor, speaks with the Leukemia and Lymphoma Society on “The Bloodline” podcast. Christabel shares her longtime journey with lymphoma, including a relapse and going through the second diagnosis during a global pandemic. She also shares her struggles of not only a diagnosis, where she is in the small percentage that didn’t respond to first-line treatment, but also going through cancer as a racial minority and young adult.
Practically speaking: Antiracist survivorship advice from and for young BIPOC patients. Elephants and Tea Magazine. (2020)
by Cheung, C.K.
On May 26, 2021, mass uprisings against racism and police brutality erupt after video footage capturing the violent murder of George Floyd, an unarmed Black man in police custody went viral. The response from all sectors of industry soon followed. Among them, professional and patient advocacy organizations within adolescent and young adult (AYA) oncology have been rushing to develop quick responses, and in many cases are reaching out to AYA patients of color for help with these specific relation efforts. Herein lies the problem. Racial minority ay, AY patients are being called to work on organizational responses without compensation. During a global pandemic. Amidst the pandemonium-on-top-of-pandemic, we (BIPOC AYA patients) declined opportunities to support such knee-jerk responses from predominantly white organizations. We felt that these efforts would not benefit and may harm racial minority AYA patients. Instead, my colleagues and I sought to present an authentic discussion of racial minority AYA cancer experience.
Black girl cancer magic. Elephants and Tea Magazine (2020)
by Cheung, C.K.
Young people, Black people, and young Black women get cancer too! I’m honored to ink this laugh-cry-laugh-cry story of Chellese Parker and Iman Perry to tell you how it is… The fact that their table was the only one with a grip of young POC cancer patients at CancerCON, made me ask to join them – for all the same reasons why Black kids in elementary school sit together in the cafeteria. Being a brown-skinned Asian woman, I appreciated the melanin.