Introduction: The prevalence of cancer survivorship in the USA is expected to increase in the future because the US population is increasing in size and is aging and because survival following diagnosis is improving for many types of cancer. Medical care costs associated with cancer are also projected to increase dramatically. However, currently available data for estimating medical care costs and other important aspects of the burden of cancer, including time spent receiving medical care, productivity loss due to morbidity for patients and their families, and financial hardship, are limited, particularly in the population under the age of 65.
Methods: We describe selected publicly available data sources for estimating the burden of cancer in the USA and a new collaborative effort to improve the quality of these data: the nationally representative Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement.
Conclusions: Data from this effort can be used to address key gaps in cancer survivorship research related to medical care costs, employment patterns, financial hardship, and other aspects of the burden of illness for cancer survivors and their families.
Implications for cancer survivors: Research using the MEPS Experiences with Cancer Survivorship Supplement can inform efforts by health care policy makers, healthcare systems, providers, and employers to improve the cancer survivorship experience in the USA.