Pediatric cancer survivorship research: experience of the Childhood Cancer Survivor Study.
The Childhood Cancer Survivor Study (CCSS) is a comprehensive multicenter study designed to quantify and better understand the effects of pediatric cancer and its treatment on later health, including behavioral and sociodemographic outcomes. The CCSS investigators have published more than 100 articles in the scientific literature related to the study. As with any large cohort study, high standards for methodologic approaches are imperative for valid and generalizable results. In this article we describe methodological issues of study design, exposure assessment, outcome validation, and statistical analysis. METHODS for handling missing data, intrafamily correlation, and competing risks analysis are addressed; each with particular relevance to pediatric cancer survivorship research. Our goal in this article is to provide a resource and reference for other researchers working in the area of long-term cancer survivorship.
Cancer Prevention and Clinical Statistics Programs, Fred Hutchinson Cancer Research Center, Seattle, WA 98109, USA. wleisenr@fhcrc.org
Wendy M
WM
Leisenring
Ann C
AC
Mertens
Gregory T
GT
Armstrong
Marilyn A
MA
Stovall
Joseph P
JP
Neglia
Jennifer Q
JQ
Lanctot
John D
JD
Boice
John A
JA
Whitton
Yutaka
Y
Yasui
D000293:Adolescent; D000367:Age Factors; D000970:Antineoplastic Agents / Q000627:therapeutic use; D002318:Cardiovascular Diseases / Q000453:epidemiology; D002648:Child; D015331:Cohort Studies; D015897:Comorbidity; D003625:Data Collection / Q000592:standards; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D015994:Incidence; D008297:Male; D015337:Multicenter Studies as Topic; D054547:National Cancer Institute (U.S.); D009369:Neoplasms / Q000401:mortality* / Q000628:therapy*; D010358:Patient Participation / Q000706:statistics & numerical data*; D011247:Pregnancy; D011252:Pregnancy Complications, Neoplastic / Q000401:mortality / Q000628:therapy; D011788:Quality of Life; D011829:Radiation Dosage; D015203:Reproducibility of Results; D012189:Retrospective Studies; D018570:Risk Assessment; D017678:Sex Distribution; D035781:Siblings; D015996:Survival Rate; D017741:Survivors / Q000706:statistics & numerical data*; D016896:Treatment Outcome; D014481:United States / Q000453:epidemiology
D000970:Antineoplastic Agents