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From Cancer Patient to Cancer Survivor: Lost in Transition
To conduct research in these priority areas, large study populations are needed that represent the diversity of cancer survivors in terms of their type of cancer and treatment as well as their sociodemographic and health care characteristics. Existing research mechanisms need to be fully utilized and in some cases enhanced to provide better opportunities for cancer survivorship research. For example:
More long-term follow-up studies should be conducted of individuals enrolled in clinical trials through the NCI-sponsored Cooperative Groups;
Additional survivorship special studies should be conducted through population-based cancer registries;
National household and health care surveys should be analyzed to capture information on survivorship;
Opportunities should be sought to link data from cancer registries to administrative databases;
The follow-up period of ongoing cancer health services research studies should be extended to yield more information on long-term survivorship; and
Investigators should be encouraged to use existing primary care and health services research networks to conduct cancer survivorship research.
In addition to harnessing these existing mechanisms, the committee recommends that federal (e.g., CMS, AHRQ, NCI) and private (ACS, health plans) research sponsors support a large new research initiative on cancer patient follow-up. Answers to the following basic questions about survivorship care are needed:
How frequently should patients be evaluated following their primary cancer therapy?
What tests should be included in the follow-up regimen?
Who should provide follow-up care?
A call for such research was made in IOM’s Ensuring Quality Cancer Care report (1999), but it has not yet been conducted. In some cases large clinical trials will be needed to answer these questions. The committee concluded that improvements in cancer survivors’ care and quality of life depend on a much expanded research effort.