In addition to survival among adolescents and young adults (AYAs) with hematological malignancies lagging behind that of children and older adults, AYAs also face unique challenges related to their physical, psychosocial, and economic circumstances.
Survival among adolescents and young adults (AYAs) with hematological malignancies (HMs) have improved, but it still lags behind the survival of children and older adults. In addition, AYAs face unique challenges related to their disease biology, as well as physical, psychosocial, and economic circumstances.
A new review published in Blood, the journal of the American Society of Hematology, discussed the psychosocial issues AYAs with HMs deal with and how they impact their health-related quality of life.
“AYAs aim to achieve several developmental milestones,” the authors explained, but that “cancer diagnosis and treatment challenge the ability of AYAs to achieve these milestones.”
Studies reviewed found that AYAs have a feeling of being “left behind” as their cancer and treatment are “a major disruption” for their education. One Dutch study found that survivors of lymphoma had a lower educational level compared with their healthy counterparts.
AYAs with cancer and survivors also face employment problems: an American study showing that 24% of AYAs with cancer were unemployed compared with 14% of controls who reported being unemployed because of health issues. After treatment finishes, employment remains a struggle with 28% of AYA cancer survivors not working 15 to 35 months.
“Future research might focus on effective communication strategies between workers and employers to identify appropriate work modifications to help balance the demand of work with adverse treatment-related effects, preventing patients form quitting work altogether,” the authors suggested.
AYAs with cancer also usually find themselves dependent on others. Some move back into their parents' home. While there are benefits of having someone care for them in this difficult time, a study found that they also felt “infantilized by their parents, significant others, or partner.”
A cancer diagnosis can create distance in social relationships with the AYAs diagnosis being a source of discomfort among friends.
The long-term challenges for AYAs include the impact a cancer diagnosis can have on sexual functioning and starting a family since cancer treatments can destroy reproductive cells. While there are options for fertility preservation, discussion, referrals, and treatment remain inconsistent, according to the authors.
Compared with older and younger patients with cancer, AYAs also face unique psychological issues. AYAs don’t have the age and life experience that help boost coping skills for older patients, but they also have better cognitive capacity than pediatric patients to “understand the severity of their illness,” the authors wrote.
The combination of these unique challenges and stresses can negatively affect health-related quality of life, which is worse for AYAs compared with healthy individuals, studies have found.
With AYAs having complex care needs and a lack of experience navigating medical systems, the authors recommend the use of AYA multidisciplinary teams that include routine medical professionals, specialized nurses, fertility and sexual experts, psychologists, and social workers.
“Addressing the physical, psychosocial, and economic challenges early in the disease trajectory will help reduce the impact of long-term effects,” the authors wrote.
Husson O, Huijgens PC, van der Graaf WTA. Psychosocial challenges and health-related quality of life of adolescents and young adults with hematologic malignancies. Blood. 2018;132(4):385-392. doi: 10.1182/blood-2017-11-778555.