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Childhood Cancer Survivorship: Improving Care and Quality of Life (2003)
National Cancer Policy Board (NCPB)
Institute of Medicine (IOM)

Citation Manager

. "8. Research Issues." Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC: The National Academies Press, 2003.

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SUMMARY AND CONCLUSIONS

There is a growing recognition that only through continued, systematic follow-up of large cohorts of survivors will the full extent of late effects be known. Amelioration of these late effects will require investments in intervention research. Ultimately, clinical research to find targeted therapies that maximize survival while minimizing late effects will likely improve the outlook for future generations of childhood cancer survivors. In the meantime, research is needed to optimize the recovery of cancer survivors and to test ways of delivering appropriate clinical and supportive care services.

Several ongoing research activities will answer many outstanding questions about late effects among childhood cancer survivors. The Childhood Cancer Survivor Study, in particular, will provide many opportunities for researchers. Relatively little multi-institutional survivorship research has taken place within the member institutions of the Children’s Oncology Group, even though the majority of children with cancer receive their care in these settings. A renewed commitment to such research, along with investments in infrastructure to improve the ability to systematically identify and follow patients, would greatly improve the capacity and opportunities for survivorship research. While clinical, epidemiologic, and behavioral research in childhood survivorship has emerged to provide insights into childhood cancer survivorship, there appears to have been relatively little health services research to understand the health care experience and needs of childhood cancer survivors and their families.

REFERENCES

Bhatia S, Robison LL, Oberlin O, Greenberg M, Bunin G, Fossati-Bellani F, Meadows AT. 1996. Breast cancer and other second neoplasms after childhood Hodgkin’s disease. N Engl J Med 334(12):745-51.

Bhatia S. 2002. Children’s Oncology Group Late Effects Committtee. National Cancer Policy Board Meeting. Washington, DC.


Castleberry RP. 1997. Biology and treatment of neuroblastoma. Pediatr Clin North Am 44(4):919-37.

Children’s Oncology Group. 2001. Requirements for Institutional Membership. Arcadia, CA : COG.


Health Resources and Services Administration. 2000a. Title V: A Snapshot of Maternal and Child Health, 2000. Rockville, MD: Health Resources and Services Administration.

Health Resources and Services Administration. 2000b. Understanding Title V of the Social Security Act. Rockville, MD: Health Resources and Services Aministration, The Maternal and Child Health Bureau.


Link, MP, Shuster JJ, Donaldson SS, Berard CW, Murphy SB. 1997. Treatment of children and young adults with early-stage non-Hodgkin’s lymphoma. N Engl J Med. Oct 30; 337(18):1259-66.


Meadows AT, D’Angio GJ. 1974. Late effects of cancer treatment: methods and techniques for detection. Semin Oncol 1(1):87-90.

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