Here’s a disturbing fact: persons aged 15 to 39 years old have worse cancer survival than any other age group [1, 2]. Here’s another: whereas cancer survival in general has improved significantly over the past 30 years, ostensibly due to improvements in the state of the art of medicine, survival has not improved over the same period in this adolescent and young adult age group .
It seems incongruous in the current day that a segment of the population at the peak of its health and fitness is over-represented in cancer deaths, but the reality is that older and younger groups enjoy better survival following a cancer diagnosis than the adolescent and young adult population.
Youth, it seems, is not a protective factor for dealing with a life-threatening illness such as cancer.
Worse yet for males: within the adolescent and young adult age group, survival in common cancers such as melanoma and colorectal cancer is further reduced in men compared with women [4, 5].
A further depressing statistic is that adolescent and young adult cancer survivors have a lower quality of life compared with the general population due to the persistence of challenges beyond cancer diagnosis and treatment .
There is no adequate explanation to account for these disparities, but there are some clues to indicate that adolescents and young adults are being disadvantaged within the present health care system.
Hospital is no place to get better
A recent major study that investigated the experience that accompanies diagnosis, treatment, dying and death of adolescents and young adults from the perspective of their family members revealed there is a systematic failure to meet the ‘higher order’ needs specific to this group .
Amongst the mass of data that this study produced, a major theme to emerge in the narrative stories of a sample of 26 family members was the experience ‘of the reality of hospitalization’. Within this theme, issues were identified around the place of treatment, the hospital experience, of not fitting in, and confronting illness and death.
The investigators in this study concluded that adolescents and young adults living with cancer are exposed to a ‘landscape’ that does not facilitate a therapeutic experience.
Hospital, it would appear, is no place for an adolescent or young adult to get better.
Absence of effective psychosocial support
Among the milieu of unique features that characterize the cancer experience of adolescent and young adult persons, the lack of access to appropriate psychosocial support is a major concern . Not only does a psychosocial approach avoid the distinction between curing and caring through its whole person approach to personhood , but it has also been shown to positively influence both survival and quality of life [8, 10, 11].
A psychosocial approach recognizes that a person with cancer and high levels of emotional distress will incur a weakened immune response and increased inflammation that will only help the cancer to progress. Effective psychosocial intervention is therefore needed to address the underlying emotional distress in order to facilitate an improved immune response to the cancer.
Adolescents and young adults themselves recognize the role for resilience in order to handle the adversity of cancer diagnosis and treatment. In one study designed to elicit an understanding of the key factors that enhance (or inhibit) resilience as a means of coping with cancer, adolescent and young adult participants reported 5 major themes :
- Stress and coping
- Goals, life purpose, and planning
- Gratitude and meaning
- Connection and belonging
Key message: effective treatment of cancer in the adolescent and young adult population appears to be less about cure and more about promoting certain skills in stress management, goal-setting, benefit-finding and connection enhancement. Learning such skills may empower adolescents and young adults during their cancer experience, thereby improving psychosocial outcomes and, as a result, overall health and survival outcomes.
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- Tunon-de-Lara, C., André, G., Macgrogan, G., Dilhuydy, J.M., Bussières, J.E., Debled, M., et al. (2011). Ann Surg Oncol, 18(5): 1372–1379.
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- Shaw PH, Reed DR, Yeager N, et al. Adolescent and young adult (AYA) oncology in the United States: a specialty in its late adolescence. J Pediatr Hematol Oncol. 2015 Mar 6. [Epub ahead of print]
- Hendifar, A., Yang, D., Lenz, F., Lurje, G., Pohl, A., Lenz, C., et al. Gender disparities in metastatic colorectal cancer survival. Clin Cancer Res, 15(20): 6391–6397.
- Gamba, C.S., Clarke, C.A., Keegan, T.H., Tao, L., & Swetter, S.M. (2013). Melanoma survival disadvantage in young, non-Hispanic white males compared with females. JAMA Dermatol, 149(8):912–920.
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- Barling, J.A., Stevens, J.A., & Davies, K.M. (2014). The reality of hospitalisation: stories from family members of their hospital experience for adolescents and young adults living with and dying from cancer. Contemp Nurse, 46(2): 150–160.
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- Spiegel, D., Butler, L.D., Giese-Davis, J., Koopman, C., Miller, E., DiMiceli, S., et al. (2007). Effects of supportive-expressive group therapy on survival of patients with metastatic breast cancer: a randomized prospective trial. Cancer, 110(5): 1130–1138.
- Rosenberg AR, Yi-Frazier JP, Wharton C, et al. Contributors and inhibitors of resilience among adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2014;3:185–193.