Dead Wrong: The Growing List of Racial/Ethnic Disparities in Childhood Mortality
2015; Elsevier BV; Volume: 166; Issue: 4 Linguagem: Inglês
10.1016/j.jpeds.2015.02.001
ISSN1097-6833
AutoresGlenn Flores, Michelle Escala, Brian G. Hall,
Tópico(s)Migration, Health and Trauma
ResumoSee related articles, p 812 and 819Marked, disturbing racial/ethnic disparities exist in childhood and adolescent deaths, and these disparities have persisted over many decades.1Flores G. American Academy of Pediatrics Committee on Pediatric ResearchTechnical Report: racial and ethnic disparities in the health and healthcare of children.Pediatrics. 2010; 125: e979-e1020Crossref PubMed Scopus (349) Google Scholar For example, over a 43-year period, overall mortality rates have been consistently higher for African-American (AA) children, compared with white children, with twice the mortality rate for AA children among those 1-4 years old, and an increase in the mortality disparity ratio in the most recent 10-year period examined.2Singh G.K. Yu S.M. US childhood mortality, 1950 through 1993: trends and socioeconomic differentials.Am J Public Health. 1996; 86: 505-512Crossref PubMed Scopus (127) Google Scholar AA children are 7 times more likely than white children to die from asthma, and this disparity has increased 40% from 2001 to 2010.3Akinbami L.J. Moorman J.E. Simon A.E. Schoendorf K.C. Trends in racial disparities for asthma outcomes among children 0 to 17 years, 2001-2010.J Allergy Clin Immunol. 2014; 134: 547-553Abstract Full Text Full Text PDF PubMed Scopus (191) Google Scholar Although the overall infant mortality rate in the US continues to fall, AAs continue to have the highest infant mortality rate, at double that of whites, and the disparity ratio has not changed over time.4Rossen L.M. Schoendorf K.C. Trends in racial and ethnic disparities in infant mortality rates in the United States, 1989-2006.Am J Public Health. 2014; 104: 1549-1556Crossref PubMed Scopus (55) Google Scholar AA children and young adults are significantly more likely than white children to die by drowning, including approximately 6 times the childhood death rate for drowning in swimming pools.5Gilchrist J. Parker E.M. Centers for Disease Control and Prevention (CDC)Racial/ethnic disparities in fatal unintentional drowning among persons aged ≤ 29 years: United States, 1999-2010.MMWR Morb Mortal Wkly Rep. 2014; 63: 421-426PubMed Google Scholar AA children are more than 4 times likely to die after a liver transplant,6Thammana R.V. Knechtle S.J. Romero R. Heffron T.G. Daniels C.T. Patzer R.E. Racial and socioeconomic disparities in pediatric and young adult liver transplant outcomes.Liver Transpl. 2014; 20: 100-115Crossref PubMed Scopus (39) Google Scholar have about twice the hazards of dying of acute lymphoblastic leukemia (ALL),7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar, 8Kadan-Lottick N.S. Ness K.K. Bhatia S. Gurney J.G. Survival variability by race and ethnicity in childhood acute lymphoblastic leukemia.JAMA. 2003; 290: 2008-2014Crossref PubMed Scopus (183) Google Scholar and among those with Down syndrome, AAs have twice the adjusted hazards of death across almost all age groups (including significant higher mortality in infants 2-12 months old)9Kucik J.E. Shin M. Siffel C. Marengo L. Correa A. Congenital Anomaly Multistate Prevalence and Survival CollaborativeTrends in survival among children with Down syndrome in 10 regions of the United States.Pediatrics. 2013; 131: e27-e36Crossref PubMed Scopus (66) Google Scholar and a substantially lower median age at death (25 vs 50 years old in whites).10Centers for Disease Control and Prevention (CDC)Racial disparities in median age at death of persons with Down syndrome–United States, 1968-1997.MMWR Morb Mortal Wkly Rep. 2001; 50: 463-465PubMed Google ScholarLatino children are significantly more likely than white children to die from cancer overall, and from Ewing sarcoma, leukemias, central nervous system tumors, and melanoma, including a 37% lower 5-year survival rate for Ewing sarcoma.11Linabery A.M. Ross J.A. Childhood and adolescent cancer survival in the US by race and ethnicity for the diagnostic period 1975-1999.Cancer. 2008; 113: 2575-2596Crossref PubMed Scopus (179) Google Scholar Latino children have about double the adjusted hazards of death vs white children among those with ALL7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar and Wilms' tumor.12Amirian E.S. The role of Hispanic ethnicity in pediatric Wilms' tumor survival.Pediatr Hematol Oncol. 2013; 30: 317-327Crossref PubMed Scopus (15) Google Scholar Latino children are significantly more likely than white children to die from drowning in neighborhood pools (defined as community-shared apartment and housing-complex pools).13Saluja G. Brenner R.A. Trumble A.C. Smith G.S. Schroeder T. Cox C. Swimming pool drownings among US residents aged 5-24 years: understanding racial/ethnic disparities.Am J Public Health. 2006; 96: 728-733Crossref PubMed Scopus (60) Google Scholar Puerto Rican children have 4 times the hazards of dying from ALL as white children (and the highest mortality rate of any racial/ethnic group or subgroup),7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar, 8Kadan-Lottick N.S. Ness K.K. Bhatia S. Gurney J.G. Survival variability by race and ethnicity in childhood acute lymphoblastic leukemia.JAMA. 2003; 290: 2008-2014Crossref PubMed Scopus (183) Google Scholar and among 1- to 4-year-old children, Central and South Americans and Puerto Ricans have significantly higher overall crude death rates.2Singh G.K. Yu S.M. US childhood mortality, 1950 through 1993: trends and socioeconomic differentials.Am J Public Health. 1996; 86: 505-512Crossref PubMed Scopus (127) Google ScholarAlthough fewer studies have been conducted on mortality disparities for American-Indian/Alaska-Native (AIAN) and Asian/Pacific-Islander (API) children, the documented disparities are just as stark. AIAN children are 2 to 3 times more likely (depending on the age group) to die than white children.14Wong C.A. Gachupin F.C. Holman R.C. MacDorman M.F. Cheek J.E. Holve S. et al.American Indian and Alaska Native infant and pediatric mortality, United States, 1999-2009.Am J Public Health. 2014; 104: S320-S328Crossref PubMed Scopus (4) Google Scholar AIAN newborns and infants are significantly more likely than their white counterparts to die from congenital malformations, sudden infant death syndrome, and sepsis, and AIAN children 1-19 years old have a significantly higher relative risk of death from unintentional injuries, homicide, influenza, and pneumonia.14Wong C.A. Gachupin F.C. Holman R.C. MacDorman M.F. Cheek J.E. Holve S. et al.American Indian and Alaska Native infant and pediatric mortality, United States, 1999-2009.Am J Public Health. 2014; 104: S320-S328Crossref PubMed Scopus (4) Google Scholar, 15Groom A.V. Hennessy T.W. Singleton R.J. Butler J.C. Holve S. Cheek J.E. Pneumonia and influenza mortality among American Indian and Alaska Native people, 1990-2009.Am J Public Health. 2014; 104: S460-S469Crossref PubMed Scopus (32) Google Scholar AIAN children have twice the adjusted hazards of white children of dying from ALL and from neuroblastoma.7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar, 8Kadan-Lottick N.S. Ness K.K. Bhatia S. Gurney J.G. Survival variability by race and ethnicity in childhood acute lymphoblastic leukemia.JAMA. 2003; 290: 2008-2014Crossref PubMed Scopus (183) Google Scholar, 16Henderson T.O. Bhatia S. Pinto N. London W.B. McGrady P. Crotty C. et al.Racial and ethnic disparities in risk and survival in children with neuroblastoma: a Children's Oncology Group study.J Clin Oncol. 2011; 29: 76-82Crossref PubMed Scopus (90) Google Scholar Hawaiian children have a significantly higher risk of death overall than white children,2Singh G.K. Yu S.M. US childhood mortality, 1950 through 1993: trends and socioeconomic differentials.Am J Public Health. 1996; 86: 505-512Crossref PubMed Scopus (127) Google Scholar and Asian children (but not Pacific-Islander children) have significantly higher hazards of dying from ALL than white children.7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google ScholarIn this issue of The Journal, two articles add to the lengthy roster of racial/ethnic disparities in childhood and adolescent mortality.17Wang Y. Liu G. Canfield M.A. Mai C.T. Gilboa S.M. Meyer R.E. et al.Racial/ethnic differences in survival of US children with birth defects: a population-based study.J Pediatr. 2015; 166: 819-826Abstract Full Text Full Text PDF PubMed Scopus (57) Google Scholar, 18Chan T. Lion K.C. Mangione-Smith R. Racial disparities in failure-to-rescue among children undergoing congenital heart surgery.J Pediatr. 2015; 166: 812-818Abstract Full Text Full Text PDF Scopus (4) Google Scholar Wang et al analyzed 9 years of pooled data on 21 birth defects from 12 population-based birth-defects surveillance programs from across the country.17Wang Y. Liu G. Canfield M.A. Mai C.T. Gilboa S.M. Meyer R.E. et al.Racial/ethnic differences in survival of US children with birth defects: a population-based study.J Pediatr. 2015; 166: 819-826Abstract Full Text Full Text PDF PubMed Scopus (57) Google Scholar This data set includes 98 833 children with at least 1 of the 21 birth defects, drawn from 14 million live births, thereby representing the largest population-based cohort of US infants with birth defects for whom survival up to 8 years old can be evaluated. The study documents racial/ethnic mortality disparities for all age groups examined, including significantly higher 8-year adjusted hazards of death for 12 of 21 defects for AA children, 8 defects for Latino children, 4 defects for API children, and 1 defect for AIAN children. Some of the disparities (compared with white children) in 8-year outcomes were striking: an encephalocele mortality rate of 70% for AIAN children vs 27% for white children; triple the adjusted hazards of death for AIAN and API children with encephalocele; and double the adjusted hazards of death for AA children with esophageal atresia/tracheoesophageal fistula, Latino children with common truncus, and API children with atrioventricular septal defects. These findings complement the results of several recent studies of single state registries that documented significantly higher adjusted hazards (compared with white children) of early childhood death for AAs and Latinos with major birth defects overall19Nembhard W.N. Salemi J.L. Ethen M.K. Fixler D.E. Canfield M.A. Mortality among infants with birth defects: joint effects of size at birth, gestational age, and maternal race/ethnicity.Birth Defects Res A Clin Mol Teratol. 2010; 88: 728-736Crossref PubMed Scopus (14) Google Scholar and with several specific congenital heart defects.20Nembhard W.N. Salemi J.L. Ethen M.K. Fixler D.E. Dimaggio A. Canfield M.A. Racial/ethnic disparities in risk of early childhood mortality among children with congenital heart defects.Pediatrics. 2011; 127: e1128-e1138Crossref PubMed Scopus (61) Google Scholar, 21Nembhard W.N. Xu P. Ethen M.K. Fixler D.E. Salemi J.L. Canfield M.A. Racial/ethnic disparities in timing of death during childhood among children with congenital heart defects.Birth Defects Res A Clin Mol Teratol. 2013; 97: 628-640Crossref PubMed Scopus (25) Google Scholar, 22Wang Y. Liu G. Druschel C.M. Kirby R.S. Maternal race/ethnicity and survival experience of children with congenital heart disease.J Pediatr. 2013; 163: 1437-1442Abstract Full Text Full Text PDF PubMed Scopus (31) Google ScholarIn the second study in this issue of The Journal, Chan et al conducted an analysis of 3 years of the nationally representative Kids' Inpatient Database to examine 38 801 children undergoing congenital heart surgery.18Chan T. Lion K.C. Mangione-Smith R. Racial disparities in failure-to-rescue among children undergoing congenital heart surgery.J Pediatr. 2015; 166: 812-818Abstract Full Text Full Text PDF Scopus (4) Google Scholar After adjusting for a wide variety of potential confounders, AA children and those of "other" race/ethnicity (including AIAN and any race/ethnicity besides white, Latino, or API) had significantly higher odds than their white counterparts of overall in-hospital mortality and failure-to-rescue (mortality after experiencing an inpatient complication). These findings complement prior studies, which found significantly higher adjusted odds of in-hospital mortality (compared with white children) after congenital heart surgery for either AA children alone,23Benavidez O.J. Gauvreau K. Del Nido P. Bacha E. Jenkins K.J. Complications and risk factors for mortality during congenital heart surgery admissions.Ann Thorac Surg. 2007; 84: 147-155Abstract Full Text Full Text PDF PubMed Scopus (82) Google Scholar, 24DiBardino D.J. Pasquali S.K. Hirsch J.C. Benjamin D.K. Kleeman K.C. Salazar J.D. et al.Effect of sex and race on outcome in patients undergoing congenital heart surgery: an analysis of the society of thoracic surgeons' congenital heart surgery database.Ann Thorac Surg. 2012; 94: 2054-2059Abstract Full Text Full Text PDF PubMed Scopus (51) Google Scholar or both AA and Latino children.25Benavidez O.J. Gauvreau K. Jenkins K.J. Racial and ethnic disparities in mortality following congenital heart surgery.Pediatr Cardiol. 2006; 27: 321-328Crossref PubMed Scopus (61) Google Scholar, 26Oster M.E. Strickland M.J. Mahle W.T. Racial and ethnic disparities in post-operative mortality following congenital heart surgery.J Pediatr. 2011; 159: 222-226Abstract Full Text Full Text PDF PubMed Scopus (76) Google Scholar, 27Chan T. Pinto N.M. Bratton S.L. Racial and insurance disparities in hospital mortality for children undergoing congenital heart surgery.Pediatr Cardiol. 2012; 33: 1026-1039Crossref PubMed Scopus (44) Google ScholarThere is an urgent need to understand and eliminate racial/ethnic disparities in childhood mortality, not only because such glaring inequities cannot be tolerated, but also because our nation is growing increasingly diverse. Allowing such mortality disparities to persist will mean greater numbers of minority children and US children will die with each passing year. Racial/ethnic minority children currently comprise 48% of US children.28United States Census. Children Characteristics. 2013 American Community Survey 1-Year Estimates. http://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_13_1YR_S0901&prodType=table. Accessed January 14, 2015.Google Scholar US Census projections indicate minority children will outnumber white children in the US in 3 years, and by 2060, over two-thirds of our nation's children will be minority.29Frey W.H. Census Projects New "Majority Minority" Tipping Points.http://www.brookings.edu/research/opinions/2012/12/13-census-race-projections-freyGoogle Scholar In 2011, for the first time in our nation's history, minority births outnumbered white births,30Tavernise S. Whites account for under half of births in U.S. New York Times, 2012. http://www.nytimes.com/2012/05/17/us/whites-account-for-under-half-of-births-in-us.html?pagewanted=all&_r=0. Accessed January 14, 2015.Google Scholar and minorities comprised the majority of children younger than 1-year old.31United States Census Bureau Most Children Younger Than Age 1 are Minorities, Census Bureau Reports.https://www.census.gov/newsroom/releases/archives/population/cb12-90.htmlGoogle ScholarWhy are there such dramatic racial/ethnic disparities in childhood mortality? In many cases, the reasons are unclear, highlighting the need for much more research on identifying root causes. There are, however, several promising areas that merit further investigation and have the potential to reduce or eliminate disparities. First, for certain conditions, genetic differences may underlie racial/ethnic mortality disparities, presenting opportunities to eliminate disparities by better tailoring therapies. A recent study revealed that the proportion of Native American genetic ancestry was significantly associated with risk of relapse in children with ALL across racial/ethnic groups, including whites, even after adjusting for known prognostic factors.32Yang J.J. Cheng C. Devidas M. Cao X. Fan Y. Campana D. et al.Ancestry and pharmacogenomics of relapse in acute lymphoblastic leukemia.Nat Genet. 2011; 43: 237-241Crossref PubMed Scopus (202) Google Scholar Furthermore, these ancestry-related differences in ALL relapse risk were eliminated by adding a single extra phase of chemotherapy, suggesting that tailoring therapy can overcome the ancestry-related risk of relapse.32Yang J.J. Cheng C. Devidas M. Cao X. Fan Y. Campana D. et al.Ancestry and pharmacogenomics of relapse in acute lymphoblastic leukemia.Nat Genet. 2011; 43: 237-241Crossref PubMed Scopus (202) Google Scholar Second, delays in diagnosis and treatment can result in untreated conditions, disease progression, presentation at higher-risk disease stages, and accessing less effective treatment early in the course of a disease. Research documents, for example, that AA children receive their diagnosis of autism a mean of 1.4 years later than white children, and are in mental-health treatment an average of 13 months longer than white children before receiving the autism diagnosis.33Mandell D.S. Listerud J. Levy S. Pinto-Martin J.A. Race differences in the age at diagnosis among Medicaid-eligible children with autism.J Am Acad Child Adolesc Psychiatry. 2002; 41: 1447-1453Abstract Full Text Full Text PDF PubMed Scopus (416) Google Scholar Third, it has been shown that children who need specialty care and receive that care from specialists have significantly fewer hospitalizations and emergency-department visits and a higher likelihood of care consistent with national practice guidelines, compared with children who need but do not receive specialty care.34Sperber K. Ibrahim H. Hoffman B. Eisenmesser B. Hsu H. Corn B. Effectiveness of a specialized asthma clinic in reducing asthma morbidity in an inner-city minority population.J Asthma. 1995; 32: 335-343Crossref PubMed Scopus (37) Google Scholar, 35Diette G.B. Skinner E.A. Nguyen T.T. Markson L. Clark B.D. Wu A.W. Comparison of quality of care by specialist and generalist physicians as usual source of asthma care for children.Pediatrics. 2001; 108: 432-437Crossref PubMed Scopus (124) Google Scholar Nevertheless, minority children are significantly more likely that white children to have problems obtaining specialty care, a barrier which has actually worsened over time.36Flores G. Lin H. Trends in racial/ethnic disparities in medical and oral health, access to care, and use of services in US children: has anything changed over the years?.Int J Equity Health. 2013; 12: 10Crossref PubMed Scopus (115) Google Scholar Fourth, although culturally competent care has been shown to improve the quality of care for minority children,37Lieu T.A. Finkelstein J.A. Lozano P. Capra A.M. Chi F.W. Jensvold N. et al.Cultural competence policies and other predictors of asthma care quality for Medicaid-insured children.Pediatrics. 2004; 114: e102-e110Crossref PubMed Scopus (77) Google Scholar it is not clear that minority children consistently receive culturally competent care. Finally, both conscious and unconscious biases occur in healthcare systems and the decision-making processes of some clinicians.38Schulman K.A. Berlin J.A. Harless W. Kerner J.F. Sistrunk S. Gersh B.J. et al.The effect of race and sex on physicians' recommendations for cardiac catheterization.N Engl J Med. 1999; 340: 618-626Crossref PubMed Scopus (1479) Google Scholar For example, although survival for children with end-stage renal disease is known to be significantly higher for those receiving preemptive renal transplantation vs hemodialysis as their initial treatment, AA children are 3 times less likely and Latino children 2 times less likely than white children to receive living-donor preemptive kidney transplants, after adjustment for relevant confounders, and regardless of insurance coverage.39Patzer R.E. Sayed B.A. Kutner N. McClellan W.M. Amaral S. Racial and ethnic differences in pediatric access to preemptive kidney transplantation in the United States.Am J Transplant. 2013; 13: 1769-1781Crossref PubMed Scopus (49) Google ScholarSeveral steps must be taken to eliminate racial/ethnic disparities in childhood deaths: (1) racial/ethnic data (by parental self-identification) routinely must be collected on all pediatric patients, so that mortality disparities can be identified, tracked, targeted as part of quality-improvement efforts, and publicly reported on a regular basis, consistent with recent Institute of Medicine reports40Institute of Medicine (IOM) Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement. The National Academies Press, Washington, DC2009Google Scholar, 41Institute of Medicine (IOM) Child and Adolescent Health and Health Care Quality: Measuring What Matters. The National Academies Press, Washington, DC2011Google Scholar and the Patient Protection and Affordable Care Act; (2) more research is needed on the root causes of mortality disparities, particularly regarding differential genetic and ancestry-related risks, diagnostic and treatment delays, access barriers to specialty care, the cultural competency of pediatric care, and conscious and unconscious bias in healthcare systems and clinical decision-making; and (3) patient-centered interventions targeting the elimination of mortality disparities need to be developed, funded, implemented, and evaluated, given that such interventions have been shown to eliminate other disparities for minority children and to save money.42Flores G. Abreu M. Chaisson C.E. Meyers A. Sachdeva R.C. Fernandez H. et al.A randomized trial of the effectiveness of community-based case management in insuring uninsured Latino children.Pediatrics. 2005; 116: 1433-1441Crossref PubMed Scopus (52) Google Scholar, 43Flores G. Snowden-Bridon C. Torres S. Perez R. Walter T. Brotanek J. et al.Improving asthma outcomes in minority children: a randomized, controlled trial of parent mentors.Pediatrics. 2009; 124: 1522-1532Crossref PubMed Scopus (75) Google ScholarIn 1966, Martin Luther King, Jr, stated, "Of all the forms of inequality, injustice in health care is the most shocking and inhuman." The medical literature and the 2 new studies in this issue of The Journal document that dramatic and alarming racial/ethnic disparities exist in childhood and adolescent deaths, and that these disparities have persisted over many decades. Urgent action is needed, as no child should ever be at greater risk of dying simply because of his or her race/ethnicity. See related articles, p 812 and 819Marked, disturbing racial/ethnic disparities exist in childhood and adolescent deaths, and these disparities have persisted over many decades.1Flores G. American Academy of Pediatrics Committee on Pediatric ResearchTechnical Report: racial and ethnic disparities in the health and healthcare of children.Pediatrics. 2010; 125: e979-e1020Crossref PubMed Scopus (349) Google Scholar For example, over a 43-year period, overall mortality rates have been consistently higher for African-American (AA) children, compared with white children, with twice the mortality rate for AA children among those 1-4 years old, and an increase in the mortality disparity ratio in the most recent 10-year period examined.2Singh G.K. Yu S.M. US childhood mortality, 1950 through 1993: trends and socioeconomic differentials.Am J Public Health. 1996; 86: 505-512Crossref PubMed Scopus (127) Google Scholar AA children are 7 times more likely than white children to die from asthma, and this disparity has increased 40% from 2001 to 2010.3Akinbami L.J. Moorman J.E. Simon A.E. Schoendorf K.C. Trends in racial disparities for asthma outcomes among children 0 to 17 years, 2001-2010.J Allergy Clin Immunol. 2014; 134: 547-553Abstract Full Text Full Text PDF PubMed Scopus (191) Google Scholar Although the overall infant mortality rate in the US continues to fall, AAs continue to have the highest infant mortality rate, at double that of whites, and the disparity ratio has not changed over time.4Rossen L.M. Schoendorf K.C. Trends in racial and ethnic disparities in infant mortality rates in the United States, 1989-2006.Am J Public Health. 2014; 104: 1549-1556Crossref PubMed Scopus (55) Google Scholar AA children and young adults are significantly more likely than white children to die by drowning, including approximately 6 times the childhood death rate for drowning in swimming pools.5Gilchrist J. Parker E.M. Centers for Disease Control and Prevention (CDC)Racial/ethnic disparities in fatal unintentional drowning among persons aged ≤ 29 years: United States, 1999-2010.MMWR Morb Mortal Wkly Rep. 2014; 63: 421-426PubMed Google Scholar AA children are more than 4 times likely to die after a liver transplant,6Thammana R.V. Knechtle S.J. Romero R. Heffron T.G. Daniels C.T. Patzer R.E. Racial and socioeconomic disparities in pediatric and young adult liver transplant outcomes.Liver Transpl. 2014; 20: 100-115Crossref PubMed Scopus (39) Google Scholar have about twice the hazards of dying of acute lymphoblastic leukemia (ALL),7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar, 8Kadan-Lottick N.S. Ness K.K. Bhatia S. Gurney J.G. Survival variability by race and ethnicity in childhood acute lymphoblastic leukemia.JAMA. 2003; 290: 2008-2014Crossref PubMed Scopus (183) Google Scholar and among those with Down syndrome, AAs have twice the adjusted hazards of death across almost all age groups (including significant higher mortality in infants 2-12 months old)9Kucik J.E. Shin M. Siffel C. Marengo L. Correa A. Congenital Anomaly Multistate Prevalence and Survival CollaborativeTrends in survival among children with Down syndrome in 10 regions of the United States.Pediatrics. 2013; 131: e27-e36Crossref PubMed Scopus (66) Google Scholar and a substantially lower median age at death (25 vs 50 years old in whites).10Centers for Disease Control and Prevention (CDC)Racial disparities in median age at death of persons with Down syndrome–United States, 1968-1997.MMWR Morb Mortal Wkly Rep. 2001; 50: 463-465PubMed Google Scholar See related articles, p 812 and 819 See related articles, p 812 and 819 Latino children are significantly more likely than white children to die from cancer overall, and from Ewing sarcoma, leukemias, central nervous system tumors, and melanoma, including a 37% lower 5-year survival rate for Ewing sarcoma.11Linabery A.M. Ross J.A. Childhood and adolescent cancer survival in the US by race and ethnicity for the diagnostic period 1975-1999.Cancer. 2008; 113: 2575-2596Crossref PubMed Scopus (179) Google Scholar Latino children have about double the adjusted hazards of death vs white children among those with ALL7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar and Wilms' tumor.12Amirian E.S. The role of Hispanic ethnicity in pediatric Wilms' tumor survival.Pediatr Hematol Oncol. 2013; 30: 317-327Crossref PubMed Scopus (15) Google Scholar Latino children are significantly more likely than white children to die from drowning in neighborhood pools (defined as community-shared apartment and housing-complex pools).13Saluja G. Brenner R.A. Trumble A.C. Smith G.S. Schroeder T. Cox C. Swimming pool drownings among US residents aged 5-24 years: understanding racial/ethnic disparities.Am J Public Health. 2006; 96: 728-733Crossref PubMed Scopus (60) Google Scholar Puerto Rican children have 4 times the hazards of dying from ALL as white children (and the highest mortality rate of any racial/ethnic group or subgroup),7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar, 8Kadan-Lottick N.S. Ness K.K. Bhatia S. Gurney J.G. Survival variability by race and ethnicity in childhood acute lymphoblastic leukemia.JAMA. 2003; 290: 2008-2014Crossref PubMed Scopus (183) Google Scholar and among 1- to 4-year-old children, Central and South Americans and Puerto Ricans have significantly higher overall crude death rates.2Singh G.K. Yu S.M. US childhood mortality, 1950 through 1993: trends and socioeconomic differentials.Am J Public Health. 1996; 86: 505-512Crossref PubMed Scopus (127) Google Scholar Although fewer studies have been conducted on mortality disparities for American-Indian/Alaska-Native (AIAN) and Asian/Pacific-Islander (API) children, the documented disparities are just as stark. AIAN children are 2 to 3 times more likely (depending on the age group) to die than white children.14Wong C.A. Gachupin F.C. Holman R.C. MacDorman M.F. Cheek J.E. Holve S. et al.American Indian and Alaska Native infant and pediatric mortality, United States, 1999-2009.Am J Public Health. 2014; 104: S320-S328Crossref PubMed Scopus (4) Google Scholar AIAN newborns and infants are significantly more likely than their white counterparts to die from congenital malformations, sudden infant death syndrome, and sepsis, and AIAN children 1-19 years old have a significantly higher relative risk of death from unintentional injuries, homicide, influenza, and pneumonia.14Wong C.A. Gachupin F.C. Holman R.C. MacDorman M.F. Cheek J.E. Holve S. et al.American Indian and Alaska Native infant and pediatric mortality, United States, 1999-2009.Am J Public Health. 2014; 104: S320-S328Crossref PubMed Scopus (4) Google Scholar, 15Groom A.V. Hennessy T.W. Singleton R.J. Butler J.C. Holve S. Cheek J.E. Pneumonia and influenza mortality among American Indian and Alaska Native people, 1990-2009.Am J Public Health. 2014; 104: S460-S469Crossref PubMed Scopus (32) Google Scholar AIAN children have twice the adjusted hazards of white children of dying from ALL and from neuroblastoma.7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar, 8Kadan-Lottick N.S. Ness K.K. Bhatia S. Gurney J.G. Survival variability by race and ethnicity in childhood acute lymphoblastic leukemia.JAMA. 2003; 290: 2008-2014Crossref PubMed Scopus (183) Google Scholar, 16Henderson T.O. Bhatia S. Pinto N. London W.B. McGrady P. Crotty C. et al.Racial and ethnic disparities in risk and survival in children with neuroblastoma: a Children's Oncology Group study.J Clin Oncol. 2011; 29: 76-82Crossref PubMed Scopus (90) Google Scholar Hawaiian children have a significantly higher risk of death overall than white children,2Singh G.K. Yu S.M. US childhood mortality, 1950 through 1993: trends and socioeconomic differentials.Am J Public Health. 1996; 86: 505-512Crossref PubMed Scopus (127) Google Scholar and Asian children (but not Pacific-Islander children) have significantly higher hazards of dying from ALL than white children.7Goggins W.B. Lo F.F. Racial and ethnic disparities in survival of US children with acute lymphoblastic leukemia: evidence from the SEER database 1988-2008.Cancer Causes Control. 2012; 23: 737-743Crossref PubMed Scopus (54) Google Scholar In this issue of The Journal, two articles add to the lengthy roster of racial/ethnic disparities in childhood and adolescent mortality.17Wang Y. Liu G. Canfield M.A. Mai C.T. Gilboa S.M. Meyer R.E. et al.Racial/ethnic differences in survival of US children with birth defects: a population-based study.J Pediatr. 2015; 166: 819-826Abstract Full Text Full Text PDF PubMed Scopus (57) Google Scholar, 18Chan T. Lion K.C. Mangione-Smith R. Racial disparities in failure-to-rescue among children undergoing congenital heart surgery.J Pediatr. 2015; 166: 812-818Abstract Full Text Full Text PDF Scopus (4) Google Scholar Wang et al analyzed 9 years of pooled data on 21 birth defects from 12 population-based birth-defects surveillance programs from across the country.17Wang Y. Liu G. Canfield M.A. Mai C.T. Gilboa S.M. Meyer R.E. et al.Racial/ethnic differences in survival of US children with birth defects: a population-based study.J Pediatr. 2015; 166: 819-826Abstract Full Text Full Text PDF PubMed Scopus (57) Google Scholar This data set includes 98 833 children with at least 1 of the 21 birth defects, drawn from 14 million live births, thereby representing the largest population-based cohort of US infants with birth defects for whom survival up to 8 years old can be evaluated. The study documents racial/ethnic mortality disparities for all age groups examined, including significantly higher 8-year adjusted hazards of death for 12 of 21 defects for AA children, 8 defects for Latino children, 4 defects for API children, and 1 defect for AIAN children. Some of the disparities (compared with white children) in 8-year outcomes were striking: an encephalocele mortality rate of 70% for AIAN children vs 27% for white children; triple the adjusted hazards of death for AIAN and API children with encephalocele; and double the adjusted hazards of death for AA children with esophageal atresia/tracheoesophageal fistula, Latino children with common truncus, and API children with atrioventricular septal defects. These findings complement the results of several recent studies of single state registries that documented significantly higher adjusted hazards (compared with white children) of early childhood death for AAs and Latinos with major birth defects overall19Nembhard W.N. Salemi J.L. Ethen M.K. Fixler D.E. Canfield M.A. Mortality among infants with birth defects: joint effects of size at birth, gestational age, and maternal race/ethnicity.Birth Defects Res A Clin Mol Teratol. 2010; 88: 728-736Crossref PubMed Scopus (14) Google Scholar and with several specific congenital heart defects.20Nembhard W.N. Salemi J.L. Ethen M.K. Fixler D.E. Dimaggio A. Canfield M.A. Racial/ethnic disparities in risk of early childhood mortality among children with congenital heart defects.Pediatrics. 2011; 127: e1128-e1138Crossref PubMed Scopus (61) Google Scholar, 21Nembhard W.N. Xu P. Ethen M.K. Fixler D.E. Salemi J.L. Canfield M.A. Racial/ethnic disparities in timing of death during childhood among children with congenital heart defects.Birth Defects Res A Clin Mol Teratol. 2013; 97: 628-640Crossref PubMed Scopus (25) Google Scholar, 22Wang Y. Liu G. Druschel C.M. Kirby R.S. Maternal race/ethnicity and survival experience of children with congenital heart disease.J Pediatr. 2013; 163: 1437-1442Abstract Full Text Full Text PDF PubMed Scopus (31) Google Scholar In the second study in this issue of The Journal, Chan et al conducted an analysis of 3 years of the nationally representative Kids' Inpatient Database to examine 38 801 children undergoing congenital heart surgery.18Chan T. Lion K.C. Mangione-Smith R. Racial disparities in failure-to-rescue among children undergoing congenital heart surgery.J Pediatr. 2015; 166: 812-818Abstract Full Text Full Text PDF Scopus (4) Google Scholar After adjusting for a wide variety of potential confounders, AA children and those of "other" race/ethnicity (including AIAN and any race/ethnicity besides white, Latino, or API) had significantly higher odds than their white counterparts of overall in-hospital mortality and failure-to-rescue (mortality after experiencing an inpatient complication). These findings complement prior studies, which found significantly higher adjusted odds of in-hospital mortality (compared with white children) after congenital heart surgery for either AA children alone,23Benavidez O.J. Gauvreau K. Del Nido P. Bacha E. Jenkins K.J. Complications and risk factors for mortality during congenital heart surgery admissions.Ann Thorac Surg. 2007; 84: 147-155Abstract Full Text Full Text PDF PubMed Scopus (82) Google Scholar, 24DiBardino D.J. Pasquali S.K. Hirsch J.C. Benjamin D.K. Kleeman K.C. Salazar J.D. et al.Effect of sex and race on outcome in patients undergoing congenital heart surgery: an analysis of the society of thoracic surgeons' congenital heart surgery database.Ann Thorac Surg. 2012; 94: 2054-2059Abstract Full Text Full Text PDF PubMed Scopus (51) Google Scholar or both AA and Latino children.25Benavidez O.J. Gauvreau K. Jenkins K.J. Racial and ethnic disparities in mortality following congenital heart surgery.Pediatr Cardiol. 2006; 27: 321-328Crossref PubMed Scopus (61) Google Scholar, 26Oster M.E. Strickland M.J. Mahle W.T. Racial and ethnic disparities in post-operative mortality following congenital heart surgery.J Pediatr. 2011; 159: 222-226Abstract Full Text Full Text PDF PubMed Scopus (76) Google Scholar, 27Chan T. Pinto N.M. Bratton S.L. Racial and insurance disparities in hospital mortality for children undergoing congenital heart surgery.Pediatr Cardiol. 2012; 33: 1026-1039Crossref PubMed Scopus (44) Google Scholar There is an urgent need to understand and eliminate racial/ethnic disparities in childhood mortality, not only because such glaring inequities cannot be tolerated, but also because our nation is growing increasingly diverse. Allowing such mortality disparities to persist will mean greater numbers of minority children and US children will die with each passing year. Racial/ethnic minority children currently comprise 48% of US children.28United States Census. Children Characteristics. 2013 American Community Survey 1-Year Estimates. http://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_13_1YR_S0901&prodType=table. Accessed January 14, 2015.Google Scholar US Census projections indicate minority children will outnumber white children in the US in 3 years, and by 2060, over two-thirds of our nation's children will be minority.29Frey W.H. Census Projects New "Majority Minority" Tipping Points.http://www.brookings.edu/research/opinions/2012/12/13-census-race-projections-freyGoogle Scholar In 2011, for the first time in our nation's history, minority births outnumbered white births,30Tavernise S. Whites account for under half of births in U.S. New York Times, 2012. http://www.nytimes.com/2012/05/17/us/whites-account-for-under-half-of-births-in-us.html?pagewanted=all&_r=0. Accessed January 14, 2015.Google Scholar and minorities comprised the majority of children younger than 1-year old.31United States Census Bureau Most Children Younger Than Age 1 are Minorities, Census Bureau Reports.https://www.census.gov/newsroom/releases/archives/population/cb12-90.htmlGoogle Scholar Why are there such dramatic racial/ethnic disparities in childhood mortality? In many cases, the reasons are unclear, highlighting the need for much more research on identifying root causes. There are, however, several promising areas that merit further investigation and have the potential to reduce or eliminate disparities. First, for certain conditions, genetic differences may underlie racial/ethnic mortality disparities, presenting opportunities to eliminate disparities by better tailoring therapies. A recent study revealed that the proportion of Native American genetic ancestry was significantly associated with risk of relapse in children with ALL across racial/ethnic groups, including whites, even after adjusting for known prognostic factors.32Yang J.J. Cheng C. Devidas M. Cao X. Fan Y. Campana D. et al.Ancestry and pharmacogenomics of relapse in acute lymphoblastic leukemia.Nat Genet. 2011; 43: 237-241Crossref PubMed Scopus (202) Google Scholar Furthermore, these ancestry-related differences in ALL relapse risk were eliminated by adding a single extra phase of chemotherapy, suggesting that tailoring therapy can overcome the ancestry-related risk of relapse.32Yang J.J. Cheng C. Devidas M. Cao X. Fan Y. Campana D. et al.Ancestry and pharmacogenomics of relapse in acute lymphoblastic leukemia.Nat Genet. 2011; 43: 237-241Crossref PubMed Scopus (202) Google Scholar Second, delays in diagnosis and treatment can result in untreated conditions, disease progression, presentation at higher-risk disease stages, and accessing less effective treatment early in the course of a disease. Research documents, for example, that AA children receive their diagnosis of autism a mean of 1.4 years later than white children, and are in mental-health treatment an average of 13 months longer than white children before receiving the autism diagnosis.33Mandell D.S. Listerud J. Levy S. Pinto-Martin J.A. Race differences in the age at diagnosis among Medicaid-eligible children with autism.J Am Acad Child Adolesc Psychiatry. 2002; 41: 1447-1453Abstract Full Text Full Text PDF PubMed Scopus (416) Google Scholar Third, it has been shown that children who need specialty care and receive that care from specialists have significantly fewer hospitalizations and emergency-department visits and a higher likelihood of care consistent with national practice guidelines, compared with children who need but do not receive specialty care.34Sperber K. Ibrahim H. Hoffman B. Eisenmesser B. Hsu H. Corn B. Effectiveness of a specialized asthma clinic in reducing asthma morbidity in an inner-city minority population.J Asthma. 1995; 32: 335-343Crossref PubMed Scopus (37) Google Scholar, 35Diette G.B. Skinner E.A. Nguyen T.T. Markson L. Clark B.D. Wu A.W. Comparison of quality of care by specialist and generalist physicians as usual source of asthma care for children.Pediatrics. 2001; 108: 432-437Crossref PubMed Scopus (124) Google Scholar Nevertheless, minority children are significantly more likely that white children to have problems obtaining specialty care, a barrier which has actually worsened over time.36Flores G. Lin H. Trends in racial/ethnic disparities in medical and oral health, access to care, and use of services in US children: has anything changed over the years?.Int J Equity Health. 2013; 12: 10Crossref PubMed Scopus (115) Google Scholar Fourth, although culturally competent care has been shown to improve the quality of care for minority children,37Lieu T.A. Finkelstein J.A. Lozano P. Capra A.M. Chi F.W. Jensvold N. et al.Cultural competence policies and other predictors of asthma care quality for Medicaid-insured children.Pediatrics. 2004; 114: e102-e110Crossref PubMed Scopus (77) Google Scholar it is not clear that minority children consistently receive culturally competent care. Finally, both conscious and unconscious biases occur in healthcare systems and the decision-making processes of some clinicians.38Schulman K.A. Berlin J.A. Harless W. Kerner J.F. Sistrunk S. Gersh B.J. et al.The effect of race and sex on physicians' recommendations for cardiac catheterization.N Engl J Med. 1999; 340: 618-626Crossref PubMed Scopus (1479) Google Scholar For example, although survival for children with end-stage renal disease is known to be significantly higher for those receiving preemptive renal transplantation vs hemodialysis as their initial treatment, AA children are 3 times less likely and Latino children 2 times less likely than white children to receive living-donor preemptive kidney transplants, after adjustment for relevant confounders, and regardless of insurance coverage.39Patzer R.E. Sayed B.A. Kutner N. McClellan W.M. Amaral S. Racial and ethnic differences in pediatric access to preemptive kidney transplantation in the United States.Am J Transplant. 2013; 13: 1769-1781Crossref PubMed Scopus (49) Google Scholar Several steps must be taken to eliminate racial/ethnic disparities in childhood deaths: (1) racial/ethnic data (by parental self-identification) routinely must be collected on all pediatric patients, so that mortality disparities can be identified, tracked, targeted as part of quality-improvement efforts, and publicly reported on a regular basis, consistent with recent Institute of Medicine reports40Institute of Medicine (IOM) Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement. The National Academies Press, Washington, DC2009Google Scholar, 41Institute of Medicine (IOM) Child and Adolescent Health and Health Care Quality: Measuring What Matters. The National Academies Press, Washington, DC2011Google Scholar and the Patient Protection and Affordable Care Act; (2) more research is needed on the root causes of mortality disparities, particularly regarding differential genetic and ancestry-related risks, diagnostic and treatment delays, access barriers to specialty care, the cultural competency of pediatric care, and conscious and unconscious bias in healthcare systems and clinical decision-making; and (3) patient-centered interventions targeting the elimination of mortality disparities need to be developed, funded, implemented, and evaluated, given that such interventions have been shown to eliminate other disparities for minority children and to save money.42Flores G. Abreu M. Chaisson C.E. Meyers A. Sachdeva R.C. Fernandez H. et al.A randomized trial of the effectiveness of community-based case management in insuring uninsured Latino children.Pediatrics. 2005; 116: 1433-1441Crossref PubMed Scopus (52) Google Scholar, 43Flores G. Snowden-Bridon C. Torres S. Perez R. Walter T. Brotanek J. et al.Improving asthma outcomes in minority children: a randomized, controlled trial of parent mentors.Pediatrics. 2009; 124: 1522-1532Crossref PubMed Scopus (75) Google Scholar In 1966, Martin Luther King, Jr, stated, "Of all the forms of inequality, injustice in health care is the most shocking and inhuman." The medical literature and the 2 new studies in this issue of The Journal document that dramatic and alarming racial/ethnic disparities exist in childhood and adolescent deaths, and that these disparities have persisted over many decades. Urgent action is needed, as no child should ever be at greater risk of dying simply because of his or her race/ethnicity. Racial/Ethnic Differences in Survival of United States Children with Birth Defects: A Population-Based StudyThe Journal of PediatricsVol. 166Issue 4PreviewTo examine racial/ethnic-specific survival of children with major birth defects in the US. Full-Text PDF Racial Disparities in Failure-to-Rescue among Children Undergoing Congenital Heart SurgeryThe Journal of PediatricsVol. 166Issue 4PreviewTo determine if racial/ethnic disparities exist among children undergoing congenital heart surgery, using failure-to-rescue (FTR) as a measure of hospital-based quality. Full-Text PDF
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