Childhood cancer survivorship research in minority populations: A position paper from the childhood cancer survivor study

Abstract

By the middle of this century, racial/ethnic minority populations will collectively constitute 50% of the US population. This temporal shift in the racial/ethnic make-up of the US population demands a close look at the race/ethnicity-specific burden of morbidity and premature mortality among childhood cancer survivors. To optimize targeted long-term follow-up care, it is essential to understand whether the burden of morbidity borne by survivors of childhood cancer differs by race/ethnicity. This is challenging because the number of minority participants is often limited in current childhood cancer survivorship research, resulting in a paucity of race/ethnicity-specific recommendations and/or interventions. We show that while the overall childhood cancer incidence increased between 1973 and 2003, the mortality rate declined; however these changes did not differ appreciably by race/ethnicity. We speculate that any racial/ethnic differences in outcome are likely to be multifactorial, and draw upon data from the Childhood Cancer Survivor Study to illustrate the various contributors (socioeconomic characteristics, health behaviors and comorbidities) that could explain any observed differences in key treatment-related complications. Finally, we outline challenges in conducting race/ethnicity-specific childhood cancer survivorship research, showing that there are limited absolute numbers of children who are diagnosed and survive cancer in any one racial/ethnic minority population, precluding a rigorous evaluation of adverse events among specific primary cancer diagnoses and treatment exposure groups.