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Spotlight on Applied Research

Research Initiatives

Addressing Gaps in Adolescent and Young Adult Oncology Research

Several NCI activities are underway to foster much-needed data on the care, outcomes, and experiences of adolescents and young adults (AYA) with cancer. A trans-NCI Adolescent & Young Adult Oncology Working Group was formed in 2006 as a follow-up to the Progress Review Group report (PDF) on AYA oncology (AYAO) to enhance research on persons diagnosed with cancer between 15 to 39 years of age. Dr. Ashley Wilder Smith (Applied Research Program, Outcomes Research Branch) chairs the AYAO working group, along with Dr. Nita Seibel in the Division of Cancer Treatment and Diagnosis. The trans-NCI group convened a scientific workshop in September 2013, led by Drs. Smith and Seibel. The workshop's purpose was to review and discuss current research and gaps in AYA oncology research across five topic areas: epidemiology, basic biology, clinical trials, health services/medical care, and health-related quality of life/symptoms. Five working groups reviewed the science in these broad areas and identified recommendations for future study. An overview of research recommendations along with other manuscripts developed as a result of the workshop is forthcoming. Activities in all five topic areas are continuing, supported by scientists across NCI. The remainder of this article will focus on the particular AYA oncology activities being led by the Applied Research Program (ARP).

The largest population-based cohort study of AYAs with cancer to date, the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) Study, is led by Dr. Linda Harlan (ARP Health Services and Economics Branch) and Dr. Smith. This study of over 500 AYAs with germ cell, acute lymphoblastic leukemia, Hodgkin and non-Hodgkin lymphoma, and select sarcomas (osteo-, rhabdomyo- and Ewings sarcoma) recruited patients through seven Surveillance, Epidemiology, and End Results (SEER) cancer registries, and included baseline and follow-up surveys and medical record review from all identifiable healthcare settings. AYA HOPE surveys were fielded in 2008-2010, and asked participants 6-14 months and 24 months after diagnosis about their cancer care and experiences, including clinical trial involvement, job and school-related adjustment, impact of cancer on various life domains, information and service needs, symptoms, and health-related quality of life. Follow-up care, fertility preservation decisions, diagnosis of new primary cancers, and vital status were also assessed. To date, 10 manuscripts have been published and three are forthcoming, with several others in progress. AYA HOPE will inform the development of future studies to focus on care and outcomes in the AYA population.

The NCI also conducted a study to characterize the patterns of care (POC) including more in-depth information about treatment and the factors that influence both oncology care for and clinical trial participation among AYAs. This study of almost 1400 participants between the ages of 15 and 39 and diagnosed in 2006 using all SEER registries included patients diagnosed with lymphoma, germ cell cancers, sarcoma and acute lymphocytic leukemias. A second POC study will be conducted for AYA patients diagnosed in 2013 with lymphoma, sarcoma, acute lymphocytic leukemias and female breast cancer. Both studies assess key domains including treatment received, time from diagnosis to treatment, and health insurance status. Dr. Linda Harlan is leading these studies.

The AYA HOPE and POC research efforts provide a population-based perspective on psychosocial needs of AYAs with cancer and of the treatments being provided in the community. They will also provide information on the feasibility of conducting surveys and obtaining medical records in this population, identify areas of research concerns, generate hypotheses, and enhance understanding of both treatment and psychosocial issues for this important population.

The Medical Expenditures Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement is another initiative that has contributed data to AYA oncology research. The MEPS is a nationally representative survey that collects data on access to care, employment, insurance, health care utilization and expenditures from persons of all ages, including those originally diagnosed in the AYA age range (15-39 years). The NCI and several partner organizations are supporting an increased sample of cancer survivors in the MEPS. In addition, a targeted questionnaire about issues related to economic burden of cancer (Experiences with Cancer) was completed by approximately 1,500 cancer survivors. A recent study using MEPS data found that survivors of AYA cancers experience a substantial economic burden; compared to adults without a history of cancer, survivors of AYA cancers had excess annual medical expenditures of $3,170 per person and excess annual productivity losses of $2,250 per person, highlighting the need for interventions that will ensure access to lifelong risk-based follow-up care and improve economic outcomes among AYA survivors (Guy et al., 2014). Dr. Robin Yabroff is the lead for the MEPS Experiences with Cancer Survivorship Supplement.

Last Modified: 17 Oct 2014