Prepared for the Blue Ribbon Panel on Infant Mortality

Overview of Actionable Items

Prepared for the Blue Ribbon Panel on Infant Mortality

By Garry Kelley, MCH Epidemiologist, KDHE Bureau of Family Health

Infant mortality stems from an array of social, economic, health and behavioral factors. Neonatal mortality (death in the first month of life) tends to be associated with influences prenatally, during birth, in the newborn period, and even before conception. Postneonatal mortality generally tends to be associated with environmental circumstances for the infant, particularly those linked to poverty -- such as inadequate food or sanitation, unsafe housing, and inadequate supervision. Risk factors for infant mortality include: low birth weight, congenital defects, inadequate intrapartum and neonatal care, high birth order, and race (infant); age of mother, previous fetal or infant loss, poor health prior to or during the pregnancy, inadequate prenatal nutrition, low socioeconomic status, low educational attainment, smoking, and substance abuse. Research has yet to quantify in a consistent manner the relative impact of these risk factors on infant mortality (Noguchi 2007, Headley 2004). Many infant deaths may be preventable with adequate preconception and prenatal care, interventions with pregnant women, parenting education and supports, and other.

·  In Kansas there are about 300 infant deaths each year.

·  For the last five years, the infant mortality rate for Kansas has been higher than the rate for the U.S. especially among African-Americans.

·  For Kansas, the death rate for African-American infants is 2-2.5 times higher than it is for whites and it has been increasing over the last 10 years.

·  About one out of every 9 black infants will die before reaching age one.

·  About 2/3 of infant deaths occur in the first 28 days (neonatal deaths)

·  Kansas neonatal mortality rate has remained relatively level over the past 10 years.

·  About 1/3 of infant deaths occur between 1 month and 1 year of age (postneonatal mortality).

·  There is an increasing trend in postneonatal mortality.

·  The majority of infant deaths in Kansas occur in five counties (JO, GE, SG, SN, and WY).

The Blue Ribbon Panel on Infant Mortality has reviewed two different approaches to reducing infant mortality: 1) Fetal Infant Mortality Review [FIMR] which is supported by the American College of Obstetrics and Gynecology and the Maternal and Child Health Bureau of HHS, and 2) federal Healthy Start projects in Kansas City and Wichita. In addition, there have been presentations by Drs. Bloom and Evans with their perspectives about neonatal and perinatal interventions. Dr. Bloom has since provided a list for consideration: 1) Genetic counseling services throughout the state, consider telemedicine options; 2) Pay for performance and reactivate guidelines for perinatal care to promote babies delivering in optimal circumstances, 3) Promote a perinatal-neonatal collaborative for quality improvement. 4) Data / information base development to support monitoring and measurement of quality, 5) Reinvest in Perinatal Health concepts such as the perinatal council and the perinatal casualty studies.

Other members of the panel including March of Dimes urge support for a Medicaid 1115 Waiver for Birth Spacing (addresses preconception health and healthy behaviors of low-income women) and CDC's Pregnancy Risk Assessment Monitoring System [PRAMS] for better data from this survey of new mothers. Other requests for consideration are as follows: protect vulnerable maternal and child health programs from state funding cuts in the upcoming session and promote Safe Sleep campaign.

Additional information:

Fetal-Infant Mortality Review (FIMR), supported by the American College of Obstetrics and Gynecology and Maternal and Child Health Bureau, uses a community review team (CRT) to aid communities in identifying services and systems gaps and a community action team (CAT) to target interventions to high risk groups. FIMR (includes fetal deaths) provides a more comprehensive and holistic picture of the problem than IMR (Wang 2001). When FIMR is conducted there is improved MCH data assessment and analysis; client access and services; quality assurance and improvement; community partnerships and mobilization; policy development and enhancement of public health workforce (Strobino 2004, McDonnell 2004). However results differed by location and experience of the staff (Misra 2004). Perinatal system initiatives enhance both the conduct of FIMR and the execution of essential MCH services. The complexity of circumstances around deaths in infants makes it difficult for FIMRs to pinpoint exact causes or make recommendations to reduce infant mortality (McCloskey 1999). One evaluation study of FIMRs showed that they utilized the information primarily as a means of quality improvement within the program itself and they were less likely to use findings to influence other providers or policy makers (Grason 1999). For further information refer to: http://www.nfimr.org/

The federal Healthy Start Program is a community-based systems approach with about 70 projects in many metropolitan areas of the U.S. In Kan, the KC and Wichita projects utilize home-visitors and nurses to provide care coordination, improve integration of support services, promote personal responsibility, improve access to prenatal care, and provide education to at risk pregnant women and families with newborns. Evaluations of the program show an association with better rates of breastfeeding, pre-term births and placing babies on their back in program participants than in other low income mothers (Rosenbach 2009, Salihu 2008). Other evaluations showed no significant reductions in low birth weight or very pre-term births (Salihu 2008). For more information go to http://www.healthystartassoc.org/ and for the Phase I evaluation report http://mchb.hrsa.gov/healthystart/phase1report/

Pre-Conception Care has been highlighted as an area needing improvement in Kansas. Pre-conception care focuses on the women’s overall health, and risk assessment and risk prior to a pregnancy. Lack of antenatal care is associated with increases in preterm birth and post-partum hemorrhages in women and low birthweight, low APGAR scores, and perinatal mortality (Humphrey 2004, Petrou 2003). Smoking before and during pregnancy adversely affects the health of the mother and child and has been suggested as part of the ‘class effect’ seen in infant health outcomes (Johansson 2009, Salihu 2007, Kramer 2001). Intimate partner violence is associated with increased risk of low birth weight, and deaths in both the mother and fetus/infant (Boy 2004, Asling-Monemi 2003). Some other factors associated with mortality include teenage pregnancy, previous poor pregnancy outcomes, and first birth or more than 3 children, (Mohsin 2008, Asling-Monemi 2003, Phipps 2002, Bai 2002). Studies have shown that successful interventions can reduce factors associated with death in infants such as low birth weight and prematurity (Noguchi 2008). A maternal cause is further suggested in Muhuri et al. (2004) where they found an increasing trend of babies dying from maternal complications in pregnancy in all racial categories. A number of states and countries have already launched pre-conception care initiatives to try and rectify this discrepancy.

A Medicaid 1115 Waiver for birth spacing has been proposed in Kansas. This would extend preconception care for up to two years after birth to eligible women of reproductive age (150-250% of federal poverty level). Over 20 states have implemented 1115 waivers to extend continuing care to low-income women of reproductive age. Waivers help control costs, and most have been found to be cost neutral. In a detailed analysis of five of the earliest implementers, the waivers significantly lowered the average annual birth rates in all examined states (Belnap 2008, Lindrooth 2007). Unintended pregnancies, which are the targets of the Kansas waiver, are associated with increased risk of genetic disorders, prematurity and low birth weight in children and pregnancy complications in women. The majority of the savings from Medicaid waivers are thought to come from the dramatic reduction in unintended pregnancies, 2.5-10.2% among participants, and improvements in the health outcomes of mothers and children. For more information go to National Academy of State Health Policy, http://www.nashp.org/Files/shpmonitor_1115familyplanning.pdf

Pregnancy Risk Assessment Monitoring System [PRAMS] has an indirect impact on infant mortality. PRAMS is an annual survey administered to a random sample of women who have given birth in that year. It captures information on health care access, maternal behaviors not captured or inadequately captured (like drug and alcohol use) on the birth certificate, and on after-birth behaviors or knowledge of the new mothers (breastfeeding). PRAMS plays a key role in assessing the health status of women of reproductive age and infants, evaluating interventions, and better targeting or realignment of existing programs. Alaska has used its PRAMS to examine the factors that contribute to late recognition of pregnancy (Ayoola 2009). Nationally the system has been used to examine second-hand smoke, contraceptive use, intention of pregnancy, barriers to care, safe sleep, etc (Tong 2009, CDC PRAMS website). For additional information, go to http://www.cdc.gov/prams/

Safe Sleep is a national campaign to promote behaviors and products that assist parents in safely preparing their infants for sleep. In Kansas, SIDS Network of Kansas and SAFE Kids coordinate in getting this information out to parents. The program has successfully decreased the death rate from Sudden Infant Death Syndrome [SIDS] (SIDSCENTER 2008, Muhuri 2004). Nevertheless, blacks are still disproportionately affected by SIDS. Research has shown that successful counseling of parents who suffered the death of their baby from SIDS had mortality rates similar to the general population in subsequent children (Peterson 1986). However, preterm births continue to be a major contributing factor in SIDS. One study has suggested that there has been an increase in rates of suffocation and strangulation in bed. (Shapiro-Mendoza 2009, Halloran 2006). For more information, go to: http://www.healthychildcare.org/pdf/SIDSchildcaresafesleep.pdf

http://www.nichd.nih.gov/publications/pubs/safe_sleep_gen.cfm

Genetic abnormalities are one of the leading causes of death among infants. Nationally 3% of infants are born with genetic conditions, and in Kansas, genetic abnormalities are associated with about 20% of deaths in infants. Access of parents to professionals with education and training in genetics is very limited with only one Medical geneticist working in Kansas, only six certified genetics counselors. Meanwhile, Kansas is the only one of 8 states in the Heartland Region with no state genetics plan. While some preliminary work has been accomplished including a survey of providers in the state and draft work on the plan, it has not been finalized through presentation to a coalition of stakeholders and revisions as necessary. It is unlikely that a State Genetics Plan would have any direct impact in infant mortality reduction and racial disparities in infant deaths (David 2007). Rather this could help lay the groundwork for future work in genetics and newborn screening to reduce infant deaths. For further information, go to http://genes-r-us.uthscsa.edu or http://www.heartlandcollaborative.org/default.asp

There are a number of areas for intervention in neonatal care that may be effective. Some studies have found that prenatal care is a very cost-effective means of reducing infant mortality disparities (Chen 2007, Corman 1987). Inadequate prenatal care is associated with increase deaths in babies and poorer pregnancy outcomes, like low birth weight (Williams 2009). The higher rate of stillbirths and deaths observed in babies from rural areas has been suggested as an access and adequacy of prenatal care (Luo 2008, Mori 2007). Women may not seek care for a number of social and structural reasons such as unplanned pregnancies, cost of care, scheduling conflicts, etc. (Phillipi 2009, Byrd 2007). Improvements in perinatal transport systems, where high risk women are transported to level III facilities prior to birth, may reduce neonatal deaths. Some other studies have questioned transport to level III care as a factor. Reddy et al. (2009) found that births without delivery indications had higher mortality rates than those with spontaneous labor. Most interventions to prevent pre-term or growth restriction have failed (Goldenberg 2007).

References:

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Ayoola AB, Stommel M, Nettleman MD. 2009. Late recognition of pregnancy as a predictor of adverse birth outcomes. Am J Obstet Gynecol. 201(2):156.e1–6.

Bai J, Wong FW, Bauman A, Mohsin M. 2002. Parity and pregnancy outcomes. Am J Obstet Gynecol. 186(2):274–8.

Belnap D. January 2008. Health Outrcomes and Lower Costs Associated with Medicaid Family Planning Waivers. National Academy for State Health Policy at http://www.nashp.org/Files/shpbriefing_familyplanningoutcomes.pdf

Boy A, Salihu HM. 2004. Intimate partner violence and birth outcomes: a systematic review. Int J Fertil Womens Med. 49(4):159–64.

Byrd DR, Katcher ML, Peppard P, Durkin M, Remington PL. 2007. Infant mortality: explaining black/white disparities in Wisconsin. Matern Child Health J. 11(4):319-26.

Chen XK, Wen SW, Yang Q, Walker MC. 2007. Adequacy of prenatal care and neonatal mortality in infants born to mothers with and without antenatal high-risk conditions. Aust N Z J Obstet Gynaecol. 47(2):122-7.

Corman H, Joyce T, Grossman M. 1987. Cost-Effectiveness Analysis of Strategies to Reduce Infant Mortality. NBER Working Paper. No W2346.

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Grason H; Misra D. 1999. Assessment of Healthy Start Fetal and Infant Mortality Review Recommendations. Matern Child Health J. 3(3):151–9.

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Halloran DR, Alexander GR. 2006. Preterm delivery and age of SIDS death. Ann Epidemiol. 16(8):600–6.

Headley AJ. 2004. Generations of loss: contemporary perspectives on black infant mortality. J Natl Med Assoc. 96(7):987–94.

Humphrey MD, Keating SM. 2004. Lack of antenatal care in far north Queensland. Aust N Z J Obstet Gynaecol. 44(1):10–3.

Johansson AL, Dickman PW, Kramer MS, Cnattingius S. 2009. Maternal smoking and infant mortality: does quitting smoking reduce the risk of infant death? Epidemiology. 20(4):590-7.

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Lindbrooth RC; McCullough JS. 2007. The Effects of Medicaid Family Planning Expansions on Unplanned Births. Womens Health Issues. 17(2):66–74.

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McCloskey L, Plough AL, Power KL, Higgins CA, Cruz AN, Brown ER. 1999. A community-wide infant mortality review: findings and implications. Public Health Rep. 114(2):165-77.

McDonnell KA, Strobino DM, Baldwin KM, Grason H, Misra DP. 2004. Comparison of FIMR programs with other perinatal systems initiatives. Matern Child Health J. 8(4):231–8.