Research Questions

Key Questions for the CCDI on behalf of the Center for Young Adult Cancer Survivorship at USC

Whether diagnosed as a child (< age 15), adolescent, or young adult (AYA, age 15-39), young survivors of cancer face many challenges regarding their long-term outcomes. This presents a timely opportunity for the CCDI to clarify what this growing population will need in the future, but we must first clearly understand the target population for this initiative. Clarity is needed whether the intention of the CCDI is to provide data regarding cancer diagnosed in children (< age 15), adolescents (age 15-17), or young adults (age 18-39)? If it is restricted to childhood and adolescent cancers, young adults will be excluded. Ideally, the CCDI would equally prioritize those diagnosed at any age under 40 and continue data collection throughout their entire lives as survivors.

 

We suggest an investment in health services and policy research regarding survivorship care. First, enhanced data collection using mechanisms already in place could be targeted. For example, SEER-Medicare data provide detailed information about beneficiaries over 65 with cancer, including claims, from when coverage begins to death. SEER and state cancer registry data for those diagnosed with cancer under 40 could be linked with other datasets, such as the NHIS, MEPS, NIS, and others, to provide a more robust data infrastructure. Second, studies are needed to obtain data that are nationally-representative (registry-based) for AYAs. Compared with childhood survivors, little is known about AYA survivors. Third, the impact (and necessity) of lifelong surveillance among AYA survivors needs continued support. Perhaps, this can be done in a manner similar to the Center for International Blood and Marrow Transplantation Research, which is legislatively codified to collect outcomes data on all patients who have received an allogeneic stem cell transplant, in addition to leading and conducting studies, providing access to outcomes data and repository samples, facilitating training, and many other roles.[1]

How will your idea make a difference

The potential implications of being diagnosed with cancer at a young age can dramatically affect many aspects of a young person's life including their medical, psychosocial, financial, and occupational outcomes.[2,3] Although young people diagnosed with cancer make up a small proportion of the U.S. population, they have a significant impact on the national cost of health care, as the mortality burden of this population results in a substantial number of person-years of life lost, and impacts the number of young people entering the job market.[2] As our healthcare landscape continues to evolve, we need to better understand how we can provide high quality, efficient, and effective access to care across the continuum from diagnosis through treatment and into survivorship, particularly for young survivors of cancer who are trying to navigate the transition from childhood to adulthood and their long-term healthcare needs.

These suggestions are not possible without dedicated, continuous funding to support administrative oversight at the national, state, and local levels. Therefore, dedicated funds from the CCDI for health services and policy research impacting young survivors of cancer should be pursued to support researchers using diverse funding mechanisms.

References:

  1. Center for International Blood and Marrow Transplantation Research. What We Do. 2019. Accessed from: https://www.cibmtr.org/About/WhatWeDo/Pages/index.aspx.
  2. Bleyer, A., The adolescent and young adult gap in cancer care and outcome. Current Problems in Pediatric and Adolescent Health Care, 2005. 35(5): p. 182-217.
  3. Guy, G.P., et al., Estimating the health and economic burden of cancer among those diagnosed as adolescents and young adults. Health Affairs, 2014. 23(6): p. 1024-1031.

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