Clinical Care Gaps and Unmet Needs in Adolescent and Young Adult (AYA) Cancers

ABSTRACT – P01, Clinical Care Gaps and Unmet Needs in AYA Cancer Survivors
This program of research focuses on cancer care and outcomes for people diagnosed with cancer
during the adolescent and young adult (AYA) age range, from 15 to 39 years old. The clinical care and long-
term surveillance of this population of individuals are understudied despite their unique needs. Unlike younger
and older populations, individuals in the AYA age range go through major life transitions, from moving out of
the childhood home and seeking employment or higher education, to establishing a career and family. A
cancer diagnosis in the context of these life transitions presents challenges that are unique or particularly
acute. In the healthcare context, AYAs may lack of continuity of care as they transition from pediatric or
adolescent specialists to adult specialists. Fertility preservation strategies are unique to cancer patients
diagnosed as AYAs, as recommended options are available only after puberty and through child-bearing age.
As many AYAs are at the early stages of their careers, financial concerns are exacerbated with a cancer
diagnosis and its treatment, and care may be fragmented across varying providers. Thus, for AYAs,
coordination of care for cancer and other conditions may be suboptimal, influencing late effects of the cancer
or its treatment, and neglecting the concerns of AYA cancer survivors. We propose three projects, aligned
along the cancer care continuum, to improve our knowledge about the best care for AYA cancer survivors.
Project 1 focuses on fertility concerns and use of reproductive health services and their impact on cancer
treatment. Project 2 focuses on care transitions from active cancer treatment to surveillance and ancillary
services in the period 2 to 5 years after diagnosis. Project 3 documents medical conditions and late effects
that occur in AYA cancer survivors and identifies factors that influence likelihood of developing these
conditions. Each project aims to determine the best approaches to care in their area of focus, to improve
outcomes and better address patient needs. These projects are supported by three cores, an Administrative
Core, a Biostatistics and Data Harmonization Shared Resource, and a Survey Shared Resource. Population
and data resources in this P01 include: the University of North Carolina Cancer Information & Population
Health Resource with a state cancer registry linked to health claims; the California Cancer Registry linked to
statewide hospitalization, emergency department, and ambulatory surgery data; the Utah Population Database
with data similar to that from California; and the integrated healthcare settings of Kaiser Permanente Northern
and Southern California. These data provide the opportunity to examine care from multiple providers in varied
settings and will be complemented by a survey of 5,000 AYA cancer patients to include patient perspectives as
we address our research goals. The multidisciplinary, collaborative research team includes epidemiologists,
health services researchers, biostatisticians, pediatric and adult oncologists, and AYA cancer survivors. This
research will advance knowledge to improve the care and outcomes of AYA cancer patients and survivors.