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DEPARTMENTS: Guest Editorial

Adolescents and Young Adults With Cancer Across the Globe: Where Is Our Nursing Evidence?

Challinor, Julia PhD, RN

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doi: 10.1097/NCC.0000000000000945
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According to the United Nations Children's Fund, there are 1.2 billion adolescents (10–19 years old) across the globe and 90% live in low- and middle-income countries (LMICs).1 If the age range is extended to 24 years, then there are 1.8 billion adolescents and young adults (AYAs) worldwide,2 and if it extended to 39 years, it means there are 3.5 billion AYAs (2019).3 More than 1.3 million AYAs were given a diagnosis of cancer in 2019.4 Despite significant gains in childhood and adult cancer survivorship during recent decades,5,6 the same is not true for AYAs. For example, data from EUROCARE,7 for AYAs 15 to 39 years old when given a diagnosis of cancer from 2000 to 2007, found survival rates for 8 cancers were worse compared with rates in children. A 2018 Australian government report noted that, for AYAs with cancer, 94% of the 6850 disability-adjusted life years lost were because of early deaths.8

One difficulty in understanding the impact of cancer on AYAs are various age categories, a lack of inclusion in cancer registries and clinical trials, and poor long-term surveillance.9 Ages for AYAs in high-income countries (HICs) can range from 15 to 24, 29, or 39 years depending on the topic of interest, for example, treatment, epidemiology, or survivorship. A significant challenge is finding AYAs in hospitalized patient populations generally divided as pediatric units (up to 18 or 21 in most HICs) or adult units for everyone else. In LMICs, pediatric units are usually more restrictive and do not accept patients older than 12 or 13 years or, in rare occasions, 16 years. This leaves AYAs with pediatric tumors or common young adult cancers cared for on adult units by healthcare professionals with limited expertise in pediatric hematology/oncology treatments or AYA care. For example, a Brazilian study found that 51% of patients aged 15 to 19 years and 98% of patients aged 20 to 24 years were treated on adult units.10

What does this all mean for oncology nurses worldwide? For certain, there must be nursing awareness of AYAs as a distinct population requiring special nursing care during cancer treatment and survivorship. Oncology nurses who specialize in this care are found in the United Kingdom, Australia, the United States, Italy, and other HICs. The UK Teenage Cancer Trust, which supports AYAs aged 13 to 24 years, opened the first AYA unit in 1990 under the National Health Service and now supports 28 AYA units. Teams of expert nurses and youth volunteers offer specialized care, and the Director of Services is a senior oncology nurse. A large adult cancer hospital in Italy recently opened an AYA unit and took both a medical and psychosocial approach to AYA-specific issues such as clinical trials and delayed diagnoses, as well as fertility and finances.11

Unfortunately, care of AYAs in LMICs is not yet well described, although nascent attention is in place. Region-specific challenges include issues such as human immunodeficiency virus, as documented in a report from Malawi, where AYAs are more likely than children to present with human immunodeficiency virus–related Burkitt lymphoma, requiring special treatment regimens if the patient is receiving antiretroviral therapy.12 The study found AYAs with Burkitt lymphoma had poorer survival than younger children because of distinct disease biology (Epstein-Barr virus negative), missing protocols or clinical trials for AYAs, and lifestyle differences such as employment and independence from family, thus limited surveillance of treatment adherence. Nurses caring for these patients must be knowledgeable about the unique factors that impact the cancer experience of AYAs in sub-Saharan Africa to provide appropriate care.

Psychosocial distress among AYAs is also a challenge for oncology nurses. In a study of 4 hospitals in 1 Chinese province, 89.1% of AYAs with a variety of cancers had significant levels of distress, greater than in the general population with cancer reported in China, France, or the United States.13 The authors noted the oncology nurses' lack of knowledge about psychological distress and their high patient care load were contributing to this population's high level of distress.

So, how can oncology nurses address the cares, concerns, and poor outcomes of AYAs with cancer in all settings? The first step is learning about AYA cancer experiences across the cancer continuum. There is much literature from HICs as mentioned, but we need evidence from AYAs and the nurses who care for them in LMICs. Once nurses, the largest single healthcare workforce, are informed with the evidence and learn about successful strategies, they can advocate for this special population worldwide. Prioritizing specialized approaches for AYAs, including identification of these patients lost to adult units or undiagnosed in local communities because of a lack of awareness at the primary healthcare level, is well within the scope of oncology nurses in all countries. The official journal of the International Society of Nurses in Cancer Care, Cancer Nursing, and the new Cancer Care Research Online are well positioned to serve as sources of high-quality nursing research studies of AYA populations. We need the evidence from LMIC nurses who are expert at delivering oncology nursing care to AYAs across the world even in settings with limited staff and resources.

Yours in solidarity,

Julia Challinor, PhD, RN
School of Nursing
University of California San Francisco

References

1. UNICEF. Adolescent development and participation. https://www.unicef.org/adolescence. Accessed January 15, 2021.
2. World Health Organization. Engaging young people for health and sustainable development. Strategic opportunities for the World Health Organization and partners. https://www.who.int/life-course/publications/engaging-young-people-for-health-and-sustainable-development/en/. Accessed January 16, 2021.
3. United Nations. Department of Economic and Social Affairs: population dynamics. https://population.un.org/wpp/DataQuery/. Accessed January 16, 2021.
4. International Agency for Research on Cancer. Estimated number of new cases in 2020, all cancers, both sexes, ages 10–39. https://gco.iarc.fr/today/online-analysis-table?v=2020&mode=population&mode_population=continents&population=900&populations=900&key=asr&sex=0&cancer=39&type=0&statistic=5&prevalence=0&population_group=0&ages_group%5B%5D=2&ages_group%5B%5D=7&group_cancer=1&include_nmsc=1&include_nmsc_other=1. Accessed January 16, 2021.
5. American Cancer Society. https://www.cancer.org/cancer/cancer-in-children/key-statistics.html#:~:text=Childhood%20cancer%20rates%20have%20been,survival%20rate%20was%20about%2058%25. Accessed January 15, 2021.
6. American Cancer Society. Facts & figures 2019: US cancer death rate has dropped 27% in 25 years. https://www.cancer.org/latest-news/facts-and-figures-2019.html. Accessed January 15, 2021.
7. Trama A, Botta L, Foschi R, et al; EUROCARE-5 Working Group. Survival of European adolescents and young adults diagnosed with cancer in 2000-07: population-based data from EUROCARE-5. Lancet Oncol. 2016;17(7):896–906.
8. Australian Institute of Health and Welfare. Cancer in Adolescents and Young Adults in Australia. 2018. https://www.aihw.gov.au/reports/cancer/cancer-adolescents-young-adults/contents/table-of-contents.
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12. Gopal S, Gross TG. How I treat Burkitt lymphoma in children, adolescents, and young adults in sub-Saharan Africa. Blood. 2018;132(3):254–263.
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