Are Current Care Models Meeting the Psychosocial Needs of Adolescent and Young Adult Cancer Survivors? A Literature Review

Abstract

Background: Adolescents and young adults diagnosed with cancer are expected to become long-term survivors. A cancer diagnosis during this critical life stage can have a profound impact on normal psychosocial development, increasing risk for adverse long-term and late effects and influencing quality of life. The author(s) have no financial disclosures or conflicts of interest to declare.

Evaluation of a joint adult and pediatric clinic for cancer survivorship care

“…Many professionals are focused on cancer survivorship care, and in particular which cancer survivors require follow‐up in a dedicated LTFU program, and on transition of care between pediatric and adult healthcare providers . There are a variety of models described for ongoing survivorship care once survivors of childhood cancer reach adulthood, including adult oncology‐directed care, community‐based care, hybrid models of care, and joint adult/pediatric models of care …”

“…This model provides continuity of care for adult survivors of childhood cancer by including their pediatric care team, while continuing to meet the needs of aging patients . Distinct positive features of this model include the multidisciplinary team's late effects expertise and a focus on comprehensive risk‐based survivorship care that includes surveillance, monitoring, and education on health and well‐being, as well as readily available access to other medical specialists . Requiring survivors to return to their cancer center for follow‐up care, however, can be both geographically inconvenient and psychologically difficult when trying to move forward from a cancer experience .…”

“…Distinct positive features of this model include the multidisciplinary team's late effects expertise and a focus on comprehensive risk‐based survivorship care that includes surveillance, monitoring, and education on health and well‐being, as well as readily available access to other medical specialists . Requiring survivors to return to their cancer center for follow‐up care, however, can be both geographically inconvenient and psychologically difficult when trying to move forward from a cancer experience . The other drawback to consider is that the resource intensity of this type of clinic may not be necessary for all patients .…”

Exploring Social Support Networks and Interactions of Young Adult and LGBTQIA+ Cancer Survivors and Care Partners

“…Both YA and LGBTQIA+ groups also share characteristics that impact access to and engagement with formal support services such as lower income and financial stress, inadequacy of insurance, less traditional family and kinship systems, and lack of access to culturally competent care, increasing risk for unmet support needs. YA and LGBTQIA+ survivors have also reported feeling excluded from typical formal support services that have been largely developed with older, heterosexual, and cisgender patients living within traditional spousal relationships centered in nuclear, biological family structures; these services are not seen as relevant to their relationships and experiences (24,25). YA and LGBTQIA+ survivors and care partners may therefore be even more reliant on informal sources of support, which may or may not be adequate to meet their needs, but this possibility has not been widely explored within either group.…”

“…In the everyday lives of survivors and care partners, social support is accessed and activated within the real-time contexts of their actual personal networks through relationships and interactions that vary daily and over weeks, months and years (27). Social support networks are unique to each individual, and often include a mix of people who provide varying types of informal and formal support at different times (24). And while for many, support networks center on biological and legal relationships within nuclear family structures, this is changing as more YAs forgo marriage and traditional family structures and adopt more flexible kinship systems (28).…”