- Email: [email protected]
Birth Weight Gradient in Parent-Reported Special Healthcare Needs among Children Born Preterm
ORIGINAL ARTICLES Birth Weight Gradient in Parent-Reported Special Healthcare Needs among Children Born Preterm Jaclyn Havinga, MD, Dmitry Tumin, PhD, and Leslie Peedin, MD Objective To characterize the association of birth weight with parent-reported special healthcare needs (SHCN) and unmet healthcare needs among children born prematurely. Study design We analyzed data from the 2016-2017 National Survey of Children’s Health. Prematurity, birth weight, SHCN, and unmet healthcare needs were reported for one child per participating household. We analyzed children age 0-5 years, and classified birthweight among children born preterm as very low birth weight (VLBW, <1500 g), low birth weight (LBW, 1500-2500 g), and normal weight (NBW, >2500 g). Term-born NBW children were included as a reference group. Results The analysis included 190 VLBW preterm, 688 LBW preterm, 884 NBW preterm, and 15 629 NBW termborn children. Weighted SHCN prevalence was 10%, and 1% had unmet healthcare needs. On multivariable analysis, children born preterm and VLBW had significantly higher odds of SHCN compared with NBW termborn children (OR, 9.8; 95% CI, 4.9-19.6). Preterm LBW and NBW preterm groups had smaller increases in SHCN odds (OR, 2.5 and OR, 1.6, respectively). The odds of unmet healthcare needs did not differ among the 4 study groups. Conclusions Among children under 5 years of age, preterm birth and VLBW are associated with very high likelihood of SHCN, compared with LBW/NBW preterm or NBW term-born children. However, requirements for additional health services in this group were adequately met, according to caregiver report. (J Pediatr 2019;-:1-6).
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hildren born preterm (<37 weeks of gestation) are at increased risk of perinatal complications, infant mortality, and morbidities such as cerebral palsy, respiratory illness, and behavioral problems.1 Although the infant mortality rate of children born preterm declined rapidly in the 1990s, it remains at 34% for children born at less than 37 weeks of gestation as of 2017.2,3 Nevertheless, decreasing infant mortality rates among children born preterm have led to new challenges of providing appropriate care for this population.1,4 Such care may include continuing specialist visits, medical devices such as home oxygen supplementation equipment, and educational accommodation. Barriers to obtaining needed care for children born preterm may be compounded by socioeconomic disadvantage, a major risk factor for premature birth in the US.1,5 Using the Children with Special Health Care Needs screening questionnaire, a recent study estimated that 35% of children ages 811 years had special healthcare needs (SHCN; defined as having chronic physical, developmental, behavioral, or emotional conditions and requiring health-related services beyond those required by children generally) if they were born prematurely, as compared with 24% of their peers who were born at term (37-41 weeks of gestation).6 Within the population of children born preterm, very low birth weight (VLBW) may be a further risk factor for SHCN. Furthermore, considering the significant healthcare needs that may be associated with premature birth, it is important to understand the extent to which these needs are adequately met. VLBW and extreme prematurity have been shown to predict significantly higher morbidity in children born preterm,7,8 and have been associated with increased likelihood of SHCN, when comparing with normal weight or term-born controls.9,10 Among children ages 3-17 years old, lower birth weights were also associated with progressively higher likelihood of visiting the emergency department and having more outpatient clinic visits, although this study did not differentiate between term and preterm births.11 Nevertheless, these data suggest a birth weight-based gradation of healthcare needs among children born preterm. To better understand how birth weight is associated with parent-reported measures of SHCN and access to family-centered care among children born preterm, we analyzed recent data from the National Survey of Children’s Health (NSCH). Our primary aim is to characterize the association between birth weight and prevalence of parent-reported SHCN among a nationally representative sample of children born prematurely.
LBW NBW NICU NSCH SHCN VLBW
Low birth weight Normal birth weight Neonatal intensive care unit National Survey of Children’s Health Special healthcare needs Very low birth weight
From the Department of Pediatrics, Brody School of Medicine at East Carolina University; and the James and Connie Maynard Children’s Hospital, Vidant Medical Center, Greenville, NC The authors declare no conflicts of interest. 0022-3476/$ - see front matter. ª 2019 Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.jpeds.2019.10.011
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Secondarily, we aim to assess whether there are differences in parent-reported access to healthcare according to birth weight among children born prematurely.
Methods This study was a secondary analysis of a public, de-identified dataset, and was exempt from review by the institutional review board. We used data from the 2016 and 2017 NSCH, a survey conducted on behalf of the Maternal and Child Health Bureau to describe the health of noninstitutionalized children in the US.12 Previous iterations of the NSCH (2011/ 2012) have been used to describe the association between prematurity and presence of chronic disease or SHCN,6,13 and the 2016 NSCH was recently used to describe the population prevalence of Children with Special Health Care Needs and access to care coordination among this group of children.14 The 2016 and 2017 surveys were conducted using a random sample of US addresses, with households completing the survey online or via mail. In each household, respondents were requested to complete a detailed mail or online questionnaire about the health of 1 randomly selected child (topical questionnaire). Our analysis used data from the topical questionnaire, limited to children born prematurely (parent report of the child’s birth occurring >3 weeks before his or her due date),13,15 as well as a control group of termborn children of normal birth weight (NBW, >2500 g). Because our study focused on the association between parent-reported birth weight and SHCN, we further limited to sample to child ages 0-5 years (increasing the likelihood of accurate gestational age and birth weight recall) and surveys that were completed by the child’s mother or father. Last, we excluded cases missing data on study outcomes or covariates, as described elsewhere in this article. Our primary outcome was SHCN status, which was determined using a set of questions about the child’s need or use of medications, health services, and specialized therapy, as well as their experience of functional difficulties relating to a chronic condition.15 The secondary outcome was a measure of unmet healthcare needs, defined as needing but not receiving healthcare at least once in the past 12 months. The primary independent variable was birth weight, originally reported by parents in either pounds and ounces, or kilograms. NSCH staff recoded birth weights into 3 categories matching the definitions of VLBW (<1500 g), low birth weight (LBW, 1500-2500 g), and NBW (>2500 g). We used the categorical birth weight variable in our analysis, and controlled for child and family characteristics that may have confounded the association between birth weight and healthcare needs. These included race/ethnicity, parents’ highest educational attainment, child’s health insurance coverage, economic hardship (whether the family reported having a hard time affording basic needs since the child’s birth), and the family’s US Census region of residence.13-15 Insurance coverage was categorized as continuous private, continuous public, discontinuous (coverage gap or change 2
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in coverage type in the past 12 months), or none, following a recent study demonstrating that children with discontinuous coverage were especially likely to have unmet healthcare needs.16 With the analysis limited to children born more than 3 weeks before their due date, we performed no further stratification by gestational age, because exact gestational age was not collected in the NSCH. Statistical analysis was performed in Stata/SE 15.1 (StataCorp, LP, College Station, Texas). We used weighted proportions or means to compare study outcomes, child characteristics, and family characteristics according to birth weight category. Wald tests were used for comparison of descriptive statistics among groups. Multivariable binary logistic regression was used for dichotomous study outcomes (eg, SHCN status), and multivariable multinomial logistic regression was used for study outcomes with more than 2 categories (eg, need and access to care coordination). All data analysis was adjusted for survey weights (reflecting unequal probability of selection to participate in the survey), and the standard errors were adjusted for the complex survey design (reflecting nonindependence of cases from the same sampling unit).12 Two-tailed P values of less than .05 were considered statistically significant.
Results The 2016-2017 NSCH data included 20 655 children ages 05 years, of whom we excluded 2816 with unknown gestational age or birth weight, or born LBW/VLBW after 37 weeks of gestation. An additional 42 children were excluded due to missing data on study outcomes and 853 were excluded due to missing data on covariates. The final analytic sample (n = 16 944) included 186 VLBW preterm, 668 LBW preterm, 853 NBW preterm, and 15 237 NBW term-born children (mean age, 2.5 years; 49% female). The weighted prevalence of SHCN was 10%, and 1% of children had unmet healthcare needs. Child characteristics are summarized by group in Table I. On multivariable logistic regression (Table II), children born preterm and VLBW had significantly higher odds of SHCN compared with NBW term-born children (OR, 10.0; 95% CI, 4.9-20.2). The LBW and NBW preterm groups had smaller increases in the odds of SHCN relative to NBW term-born children (OR, 2.4 [95% CI, 1.5-4.0] and OR, 1.6 [95% CI, 1.04-2.4], respectively). Additional pairwise comparisons among these groups found that preterm VLBW children had significantly higher odds of SHCN than preterm NBW (OR, 6.3; 95% CI, 2.8-14.2) or preterm LBW children (OR, 4.1; 95% CI, 1.7-9.7). However, the difference in SHCN odds between preterm LBW and term-born NBW children was not statistically significant (OR, 1.5; 95% CI, 0.8-2.9). Further analysis found no differences in the odds of unmet healthcare needs among the 4 study groups (Table III; F-test P = .711), but did show that children with no insurance or discontinuous insurance were much more likely to have Havinga, Tumin, and Peedin
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Table I. Child characteristics according to gestational age and birth weight Characteristics
Preterm VLBW (n = 186)
Preterm LBW (n = 668)
Preterm NBW (n = 853)
Term-born NBW (n = 15 237)
0.48 (0.33-0.64) 0.01 (0.00-0.03) 2.4 (1.8-3.0) 0.51 (0.35-0.66)
0.18 (0.13-0.26) 0.01 (0.00-0.07) 2.4 (2.2-2.7) 0.53 (0.45-0.61)
0.13 (0.10-0.19) 0.01 (0.00-0.02) 2.4 (2.2-2.7) 0.40 (0.32-0.49)
0.09 (0.08-0.10) 0.01 (0.01-0.02) 2.5 (2.4-2.6) 0.49 (0.47-0.51)
0.16 (0.06-0.36) 0.47 (0.32-0.62) 0.17 (0.10-0.29) 0.20 (0.08-0.43)
0.27 (0.19-0.36) 0.45 (0.37-0.53) 0.16 (0.10-0.26) 0.12 (0.09-0.16)
0.31 (0.21-0.43) 0.49 (0.40-0.58) 0.09 (0.05-0.14) 0.11 (0.06-0.20)
0.20 (0.18-0.22) 0.59 (0.57-0.61) 0.09 (0.08-0.11) 0.12 (0.11-0.13)
0.18 (0.07-0.37) 0.24 (0.11-0.44) 0.28 (0.18-0.41) 0.30 (0.19-0.45)
0.20 (0.13-0.28) 0.21 (0.16-0.28) 0.27 (0.20-0.36) 0.32 (0.25-0.39)
0.22 (0.14-0.34) 0.27 (0.19-0.35) 0.22 (0.17-0.28) 0.29 (0.22-0.38)
0.15 (0.13-0.16) 0.25 (0.24-0.27) 0.29 (0.28-0.31) 0.30 (0.29-0.32)
0.55 (0.38-0.70) 0.45 (0.29-0.61) 0.01 (0.00-0.03) 0.01 (0.00-0.02)
0.64 (0.56-0.72) 0.29 (0.22-0.37) 0.02 (0.01-0.06) 0.04 (0.02-0.12)
0.61 (0.51-0.71) 0.35 (0.25-0.46) 0.01 (0.01-0.03) 0.02 (0.01-0.06)
0.67 (0.65-0.69) 0.26 (0.25-0.28) 0.04 (0.03-0.05) 0.03 (0.03-0.04)
0.33 (0.21-0.47) 0.28 (0.17-0.41) 0.34 (0.18-0.54) 0.05 (0.02-0.13) 0.97 (0.93-0.99)
0.44 (0.36-0.52) 0.30 (0.23-0.38) 0.19 (0.13-0.27) 0.07 (0.04-0.12) 0.98 (0.91-0.99)
0.47 (0.38-0.56) 0.26 (0.20-0.33) 0.23 (0.14-0.35) 0.04 (0.03-0.07) 0.98 (0.97-0.99)
0.47 (0.45-0.49) 0.33 (0.31-0.34) 0.15 (0.14-0.16) 0.06 (0.05-0.06) 0.98 (0.98-0.99)
0.24 (0.12-0.41) 0.19 (0.11-0.30) 0.39 (0.25-0.56) 0.18 (0.10-0.31)
0.19 (0.14-0.26) 0.20 (0.15-0.27) 0.31 (0.24-0.38) 0.30 (0.22-0.38)
0.15 (0.10-0.21) 0.20 (0.16-0.26) 0.39 (0.31-0.48) 0.26 (0.17-0.38)
0.17 (0.16-0.18) 0.23 (0.22-0.24) 0.36 (0.34-0.37) 0.24 (0.23-0.26)
SHCN status Unmet healthcare needs Age (years, weighted mean) Female Race/ethnicity Hispanic Non-Hispanic white Non-Hispanic black Other Parents’ highest educational attainment High school or less Some college or 2-year degree 4-Year college degree Graduate education or degree Child’s health insurance coverage in past 12 months Continuous private Continuous public Discontinuous None Family had hard time affording basic needs since child’s birth Never Rarely Somewhat often Often Child born in US Region of residence in US Northeast Midwest South West Values are weighted percentage or mean (95% CI).
unmet healthcare needs (Table III; OR, 8.8 [95% CI, 2.038.8] and OR, 14.0 [95% CI, 7.3-27.2], respectively). Additionally, families who reported that they had difficulties affording basic needs somewhat often or often were more likely to report unmet healthcare needs (Table III; OR, 3.2 [95% CI, 1.2-8.1] and OR, 8.7 [95% CI, 3.2-23.7], respectively). Last, the odds of having unmet healthcare needs increased by 50% with each additional year of the child’s age (OR, 1.5; 95% CI, 1.2-1.8).
Discussion Prematurity is associated with increased mortality and morbidity, as well as increased SHCN, compared with children born at term. These findings are exponentially increased in VLBW infants, with our analysis of a nationally representative survey demonstrating a 10-fold increase of the prevalence of SHCN when compared with term, NBW controls. Additionally, preterm VLBW children had >6 times the odds of having SHCN than preterm NBW children. These data are consistent with several studies indicating increased rates of neurodevelopmental impairment, in addition to other morbidities directly correlating with decreasing birth weight or gestational age.17 However, it is encouraging that rates of unmet healthcare needs are low in the VLBW population, and, indeed, no higher (on caregiver report) than in
LBW/NBW children born preterm, or in children born at term and NBW. These results suggest that current efforts to engage preterm children in follow-up care are appropriately addressing the needs of children born preterm and VLBW. However, the increasing rate of preterm birth, as well as increased survivability of infants at younger gestational ages, will likely contribute to increased pediatric healthcare use in developed countries. Advances in neonatology have led to the increased survivability of extremely preterm neonates, with some centers resuscitating infants born as early as 22 weeks of gestation. However, survival without neurologic impairment presents a further challenge in this group: a single-center study found that only 22% of infants born at <26 weeks survived without disability.18 The high incidence of disability in this population is associated with a wide range of short term morbidities caused by prematurity, including chronic lung disease, retinopathy of prematurity, and necrotizing enterocolitis. Long-term morbidities, such as central nervous system injury (intraventricular hemorrhage, periventricular leukomalacia) present an increased risk of adverse outcomes such as continuing neurodevelopmental impairment later in childhood.19 A meta-analysis by Jarjour et al found that extreme prematurity (22-25 weeks of gestation) was associated with high rates of severe neurodevelopmental impairment at various stages of development, through adulthood (17%59%), and that rates of surviving with minimal or no
Birth Weight Gradient in Parent-Reported Special Healthcare Needs among Children Born Preterm
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Table II. Multivariable logistic regression of SHCN status Characteristics Gestational age and birth weight Term-born NBW Preterm NBW Preterm LBW* Preterm VLBW† Age (years) Female Race/ethnicity Hispanic Non-Hispanic white Non-Hispanic black Other Parents’ highest educational attainment High school or less Some college or 2-year degree 4-Year college degree Graduate education or degree Child’s health insurance coverage in past 12 months Continuous private Continuous public Discontinuous None Family had hard time affording basic needs since child’s birth Never Rarely Somewhat often Often Child born in US Region of residence in US Northeast Midwest South West
OR (95% CI) Ref. 1.6 (1.04-2.40) 2.4 (1.5-4.0) 10.0 (4.9-20.3) 1.3 (1.3-1.4) 0.7 (0.5-0.8) Ref. 0.9 (0.6-1.2) 1.2 (0.7-1.8) 0.8 (0.5-1.2) Ref. 1.2 (0.8-1.8) 0.9 (0.6-1.3) 1.3 (0.9-1.9) Ref. 1.2 (0.9-1.6) 1.0 (0.5-1.9) 0.6 (0.2-1.7) Ref. 1.4 (1.1-1.8) 2.2 (1.6-3.1) 2.6 (1.7-3.8) 0.7 (0.3-1.6) Ref. 1.1 (0.8-1.5) 1.0 (0.8-1.4) 0.7 (0.5-1.1)
P value
.031 <.001 <.001 <.001 <.001 .343 .528 .295 .415 .694 .120
.192 .973 .333
.004 <.001 <.001 .376 .647 .851 .138
*OR vs preterm NBW = 1.5 (95% CI, 0.8-2.9; P = .182). †OR vs preterm NBW = 6.3 (95% CI, 2.8-14.2; P < .001). OR vs preterm LBW = 4.1 (95% CI, 1.7-9.7; P = .001).
impairment decreased exponentially with decreasing gestational age.20 The risk of cerebral palsy, in particular, increased from approximately 1% at 34 weeks of gestation to 20% at 26 weeks gestation or earlier.19 Other neurodevelopmental disabilities that may be present in children born preterm include intellectual disability, blindness, sensorineural hearing loss, attention disorders, and other mental health problems, as well as cognitive, language, visual-perceptual, sensory, and learning deficits.17,21,22 Although many of these SHCN may resolve with age (as evidenced by decreased hospital admissions and outpatient visits in 1 study),17 a significant number of children born preterm can be expected to continue having SHCN throughout childhood and even into adulthood. Previous studies have characterized healthcare use of children born preterm using clinical, administrative, and school databases.17,19 However, surveying parents about perceived healthcare needs and whether these needs are met for children born preterm adds important information not otherwise available from databases that only record the services that are provided. Information on SHCN status also provides 4
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Table III. Multivariable logistic regression of unmet healthcare needs in past 12 months Characteristics Gestational age and birth weight Term-born NBW Preterm NBW Preterm LBW* Preterm VLBW† Age (years) Female Race/ethnicity Hispanic Non-Hispanic white Non-Hispanic black Other Parents’ highest educational attainment High school or less Some college or 2-year degree 4-Year college degree Graduate education or degree Child’s health insurance coverage in past 12 months Continuous private Continuous public Discontinuous None Family had hard time affording basic needs since child’s birth Never Rarely Somewhat often Often Child born in US Region of residence in US Northeast Midwest South West
OR (95% CI)
P value
Ref. 0.7 (0.3-1.7) 0.8 (0.2-2.8) 0.5 (0.1-3.0) 1.5 (1.2-1.8) 0.8 (0.5-1.5)
.378 .693 .454 <.001 .496
Ref. 0.6 (0.3-1.3) 1.1 (0.5-2.5) 0.6 (0.2-1.4)
.158 .764 .225
Ref. 1.0 (0.4-2.7) 1.1 (0.4-2.9) 1.6 (0.6-4.4)
.946 .853 .315
Ref. 1.1 (0.5-2.3) 14.0 (7.3-27.2) 8.8 (2.0-38.8)
.851 <.001 .004
Ref. 0.9 (0.3-2.2) 3.2 (1.2-8.1) 8.7 (3.2-23.7) 0.9 (0.2-3.3)
.757 .015 <.001 .853
Ref. 2.5 (1.04-5.8) 2.3 (0.9-5.7) 3.3 (1.04-10.5)
.041 .068 .043
*OR vs preterm NBW = 1.2 (95% CI, 0.3-5.6; P = .839). †OR vs preterm NBW = 0.8 (95% CI, 0.1-5.6; P = .795). OR vs preterm LBW = 0.7 (95% CI, 0.15.9; P = .707).
a tool for physicians to discuss long-term neonatal outcomes with parents in the early stages of their child’s treatment. For healthcare systems, understanding the scope of healthcare needs and the extent to which these needs are currently met can help plan appropriate provision of follow-up care after neonatal intensive care unit (NICU) discharge. At our own institution and other centers, NICU clinics provide an opportunity for follow-up care through the early toddler years. Additionally, developmental-behavioral pediatricians provide services to children born preterm who continue to experience significant developmental delays. Due to the low number of subspecialists currently practicing in the rural area served by our center, developmental delays are often managed by primary care pediatricians. The high number of children born VLBW and preterm with caregiverreported SHCN speaks to an ongoing need for behavioraldevelopmental pediatricians to address the future healthcare needs of this population. Although VLBW and preterm birth were strongly associated with SHCN status in children ages 0-5 years, an encouraging finding from our study was that neither characteristic was associated with the risk of unmet healthcare needs. It is Havinga, Tumin, and Peedin
- 2019 possible that being admitted to the NICU provides an enrollment into the healthcare system and supports adequate follow-up. Medically complex children and children born extremely preterm are more likely to be admitted to a large, academic NICU, where pediatric subspecialists and primary care physicians are more readily available. Additionally, families of medically complex children often meet subspecialists during their hospital stay, helping to build familiarity and trust, and facilitate scheduling follow-up visits with these subspecialists. Finally, NICU staff often arrange specialty follow-up visits before the discharge of the infant, which ensures that NICU patients’ medical needs are met before their discharge home. However, as demonstrated in our secondary analysis, a lack of health insurance or discontinuous health insurance were strongly associated with the lack of reporting unmet healthcare needs. The impact of poverty and uninsurance or underinsurance among children who were born preterm and VLBW can mean that these patients are lost to follow-up and that their long-term outcomes are less favorable than what could be achieved if their continuous access to the healthcare system could have been assured. Although our study provides a timely characterization of SHCN among a large, nationally representative sample of children born preterm, our conclusions are limited by some aspects of the study design and data analysis. First, the study was subject to recall bias, because the parents were required to recall significant information about their child at birth, especially birth weight. Additionally, relying on parental report of their child’s illnesses could prove inaccurate if parents have a poor understanding of their child’s medical conditions. However, this could also be viewed as a strength of the survey, as it helps NICU providers to better understand parental perspectives of their child’s health status and healthcare needs. Likewise, parent reports of healthcare availability may be biased by families’ understanding of what medical specialists are appropriate for their child’s health needs, but this parental perspective is nevertheless valuable for those who provide care to this population. Additional limitations include coverage of a noninstitutionalized population, lack of detailed data on NICU stay, and lack of data on specific healthcare services received after discharge from the NICU. Finally, our study focused on gradations in birth weight rather than gestational age among children born preterm, but the 2 measures are not necessarily interchangeable in some situations (eg, intrauterine growth restriction). In conclusion, the NSCH survey found a 2- to 10-fold increase in the likelihood of SHCN reported in LBW and VLBW premature infants when compared with their term NBW counterparts. These data are consistent with the literature reporting increased sensory impairment, NDD, mental health illnesses, and so on. The survey found that all preterm children, regardless of how much specialized healthcare they required, reported equal and appropriate access to family centered care. Furthermore, the odds of having unmet healthcare needs increased by 50% for each additional year of the child’s age. This could be caused by loss to follow-up
ORIGINAL ARTICLES as children age, potentially related to loss of health insurance coverage or changes in insurance. Among children born prematurely, it is possible that the extent and severity of their SHCN decrease with age and that parents are less likely to maintain contact with subspecialty physicians. Future areas for research and advocacy should focus on increasing resources for those with developmental impairment, because decreasing mortality in the NICU will certainly increase the number of NICU graduates with comorbidities. Additionally, pediatric residency training programs may need to increase education regarding caring for NICU graduates with complications, as currently, many of these children are being managed by primary pediatricians. n Submitted for publication Jul 17, 2019; last revision received Sep 15, 2019; accepted Sep 27, 2019. Reprint requests: Jaclyn Havinga, MD, Department of Neonatology, Vidant Medical Center and East Carolina University, 2100 Stantonsburg Rd, Greenville, NC. E-mail: [email protected]
References 1. McCormick MC, Litt JS, Smith VC, Zupancic JA. Prematurity: an overview and public health implications. Annu Rev Public Health 2011;32: 367-79. 2. Demissie K, Rhoads GG, Ananth CV, Alexander GR, Kramer MS, Kogan MD, et al. Trends in preterm birth and neonatal mortality among blacks and whites in the United States from 1989 to 1997. Am J Epidemiol 2001;154:307-15. 3. Ely DM, Driscoll AK. Infant mortality in the United States, 2017: data from the period linked birth/infant death file. Nat Vital Stat Rep 2019;68:10. 4. Msall ME, Sobotka SA, Dmowska A, Hogan D, Sullivan M. Life course health development outcomes after prematurity: developing a community, clinical, and translational research agenda to optimize health, behavior, and functioning. In: Halfton N, Forrest C, Lerner R, Faustman E, eds. Handbook of life course health development. New York: Springer; 2018. p. 321-48. 5. Pursely DM, McCormick MC. Bending the arc for the extremely low gestational age newborn. Pediatr Res 2018;83:751-3. 6. Kelly MM. National perspective of health outcomes of 8- to 11-year-old children born prematurely and their full-term peers. J Pediatr Nurs 2016;31:422-9. 7. Anderson JG, Baer RJ, Partridge JC, Kuppermann M, Franck LS, Rand L, et al. Survival and major morbidity of extremely preterm infants: a population-based study. Pediatrics 2016;138:e20154434. 8. Boyle EM, Poulsen G, Field DJ, Kurinczuk JJ, Wolke D, Alfirevic Z, et al. Effects of gestational age at birth on health outcomes at 3 and 5 years of age: population based cohort study. BMJ 2012;344:e896. 9. Holsti A, Adamsson M, H€aggl€ of B, Farooqi A, Serenius F. Chronic conditions and health care needs of adolescents born at 23 to 25 weeks’ gestation. Pediatrics 2017;139:e20162215. 10. Hack M, Taylor HG, Drotar D, Schluchter M, Cartar L, Andreias L, et al. Chronic conditions, functional limitations, and special health care needs of school-aged children born with extremely low-birth-weight in the 1990s. JAMA 2005;294:318-25. 11. Boulet SL, Schieve LA, Boyle CA. Birth weight and health and developmental outcomes in US children, 1997-2005. Matern Child Health J 2011;15:836-44. 12. Data Resource Center For Child And Adolescent Health. The National Survey of Children’s Health. http://childhealthdata.org/learn-aboutthe-nsch/NSCH. Accessed July 15, 2019. 13. Kelly MM. Health and educational implications of prematurity in the United States: National Survey of Children’s Health 2011/2012 data. J Am Assoc Nurse Pract 2018;30:131-9.
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14. Miller R, Tumin D, Hayes D Jr, Uffman JC, Raman VT, Tobias JD. Unmet need for care coordination among children with special health care needs. Popul Health Manag 2019;22:255-61. 15. Schieve LA, Tian LH, Rankin K, Kogan MD, Yeargin-Allsopp M, Visser S, et al. Population impact of preterm birth and low birth weight on developmental disabilities in US children. Ann Epidemiol 2016;26: 267-74. 16. Tumin D, Miller R, Raman VT, Uffman JC, Tobias JD. Patterns of health insurance discontinuity and children’s access to health care. Matern Child Health J 2019;23:667-77. 17. Kutz P, Horsch S, K€ uhn L, Roll C. Single-centre vs. population-based outcome data of extremely preterm infants at the limits of viability. Acta Paediatr 2009;98:1451-5.
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18. Jarjour J. Neurodevelopmental outcome after extreme prematurity: a review of the literature. Pediatr Neurol 2015;52:143-52. 19. Allen MC. Neurodevelopmental outcomes of preterm infants. Curr Opin Neurol 2008;21:123-8. 20. Robertson CM, Watt MJ, Yasui Y. Changes in the prevalence of cerebral palsy for children born very prematurely within a population-based program over 30 years. JAMA 2007;297:2733-40. 21. Klitkou ST, Iversen T, Stensvold HJ, Rønnestad A. Use of hospital-based health care services among children aged 1 through 9 years who were born very preterm – a population based study. BMC Health Serv Res 2017;17:571. 22. Patel RM. Short and long-term outcomes for extremely preterm infants. Am J Perinatol 2016;33:318-28.
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hildren born preterm (<37 weeks of gestation) are at increased risk of perinatal complications, infant mortality, and morbidities such as cerebral palsy, respiratory illness, and behavioral problems.1 Although the infant mortality rate of children born preterm declined rapidly in the 1990s, it remains at 34% for children born at less than 37 weeks of gestation as of 2017.2,3 Nevertheless, decreasing infant mortality rates among children born preterm have led to new challenges of providing appropriate care for this population.1,4 Such care may include continuing specialist visits, medical devices such as home oxygen supplementation equipment, and educational accommodation. Barriers to obtaining needed care for children born preterm may be compounded by socioeconomic disadvantage, a major risk factor for premature birth in the US.1,5 Using the Children with Special Health Care Needs screening questionnaire, a recent study estimated that 35% of children ages 811 years had special healthcare needs (SHCN; defined as having chronic physical, developmental, behavioral, or emotional conditions and requiring health-related services beyond those required by children generally) if they were born prematurely, as compared with 24% of their peers who were born at term (37-41 weeks of gestation).6 Within the population of children born preterm, very low birth weight (VLBW) may be a further risk factor for SHCN. Furthermore, considering the significant healthcare needs that may be associated with premature birth, it is important to understand the extent to which these needs are adequately met. VLBW and extreme prematurity have been shown to predict significantly higher morbidity in children born preterm,7,8 and have been associated with increased likelihood of SHCN, when comparing with normal weight or term-born controls.9,10 Among children ages 3-17 years old, lower birth weights were also associated with progressively higher likelihood of visiting the emergency department and having more outpatient clinic visits, although this study did not differentiate between term and preterm births.11 Nevertheless, these data suggest a birth weight-based gradation of healthcare needs among children born preterm. To better understand how birth weight is associated with parent-reported measures of SHCN and access to family-centered care among children born preterm, we analyzed recent data from the National Survey of Children’s Health (NSCH). Our primary aim is to characterize the association between birth weight and prevalence of parent-reported SHCN among a nationally representative sample of children born prematurely.
LBW NBW NICU NSCH SHCN VLBW
Low birth weight Normal birth weight Neonatal intensive care unit National Survey of Children’s Health Special healthcare needs Very low birth weight
From the Department of Pediatrics, Brody School of Medicine at East Carolina University; and the James and Connie Maynard Children’s Hospital, Vidant Medical Center, Greenville, NC The authors declare no conflicts of interest. 0022-3476/$ - see front matter. ª 2019 Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.jpeds.2019.10.011
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Secondarily, we aim to assess whether there are differences in parent-reported access to healthcare according to birth weight among children born prematurely.
Methods This study was a secondary analysis of a public, de-identified dataset, and was exempt from review by the institutional review board. We used data from the 2016 and 2017 NSCH, a survey conducted on behalf of the Maternal and Child Health Bureau to describe the health of noninstitutionalized children in the US.12 Previous iterations of the NSCH (2011/ 2012) have been used to describe the association between prematurity and presence of chronic disease or SHCN,6,13 and the 2016 NSCH was recently used to describe the population prevalence of Children with Special Health Care Needs and access to care coordination among this group of children.14 The 2016 and 2017 surveys were conducted using a random sample of US addresses, with households completing the survey online or via mail. In each household, respondents were requested to complete a detailed mail or online questionnaire about the health of 1 randomly selected child (topical questionnaire). Our analysis used data from the topical questionnaire, limited to children born prematurely (parent report of the child’s birth occurring >3 weeks before his or her due date),13,15 as well as a control group of termborn children of normal birth weight (NBW, >2500 g). Because our study focused on the association between parent-reported birth weight and SHCN, we further limited to sample to child ages 0-5 years (increasing the likelihood of accurate gestational age and birth weight recall) and surveys that were completed by the child’s mother or father. Last, we excluded cases missing data on study outcomes or covariates, as described elsewhere in this article. Our primary outcome was SHCN status, which was determined using a set of questions about the child’s need or use of medications, health services, and specialized therapy, as well as their experience of functional difficulties relating to a chronic condition.15 The secondary outcome was a measure of unmet healthcare needs, defined as needing but not receiving healthcare at least once in the past 12 months. The primary independent variable was birth weight, originally reported by parents in either pounds and ounces, or kilograms. NSCH staff recoded birth weights into 3 categories matching the definitions of VLBW (<1500 g), low birth weight (LBW, 1500-2500 g), and NBW (>2500 g). We used the categorical birth weight variable in our analysis, and controlled for child and family characteristics that may have confounded the association between birth weight and healthcare needs. These included race/ethnicity, parents’ highest educational attainment, child’s health insurance coverage, economic hardship (whether the family reported having a hard time affording basic needs since the child’s birth), and the family’s US Census region of residence.13-15 Insurance coverage was categorized as continuous private, continuous public, discontinuous (coverage gap or change 2
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in coverage type in the past 12 months), or none, following a recent study demonstrating that children with discontinuous coverage were especially likely to have unmet healthcare needs.16 With the analysis limited to children born more than 3 weeks before their due date, we performed no further stratification by gestational age, because exact gestational age was not collected in the NSCH. Statistical analysis was performed in Stata/SE 15.1 (StataCorp, LP, College Station, Texas). We used weighted proportions or means to compare study outcomes, child characteristics, and family characteristics according to birth weight category. Wald tests were used for comparison of descriptive statistics among groups. Multivariable binary logistic regression was used for dichotomous study outcomes (eg, SHCN status), and multivariable multinomial logistic regression was used for study outcomes with more than 2 categories (eg, need and access to care coordination). All data analysis was adjusted for survey weights (reflecting unequal probability of selection to participate in the survey), and the standard errors were adjusted for the complex survey design (reflecting nonindependence of cases from the same sampling unit).12 Two-tailed P values of less than .05 were considered statistically significant.
Results The 2016-2017 NSCH data included 20 655 children ages 05 years, of whom we excluded 2816 with unknown gestational age or birth weight, or born LBW/VLBW after 37 weeks of gestation. An additional 42 children were excluded due to missing data on study outcomes and 853 were excluded due to missing data on covariates. The final analytic sample (n = 16 944) included 186 VLBW preterm, 668 LBW preterm, 853 NBW preterm, and 15 237 NBW term-born children (mean age, 2.5 years; 49% female). The weighted prevalence of SHCN was 10%, and 1% of children had unmet healthcare needs. Child characteristics are summarized by group in Table I. On multivariable logistic regression (Table II), children born preterm and VLBW had significantly higher odds of SHCN compared with NBW term-born children (OR, 10.0; 95% CI, 4.9-20.2). The LBW and NBW preterm groups had smaller increases in the odds of SHCN relative to NBW term-born children (OR, 2.4 [95% CI, 1.5-4.0] and OR, 1.6 [95% CI, 1.04-2.4], respectively). Additional pairwise comparisons among these groups found that preterm VLBW children had significantly higher odds of SHCN than preterm NBW (OR, 6.3; 95% CI, 2.8-14.2) or preterm LBW children (OR, 4.1; 95% CI, 1.7-9.7). However, the difference in SHCN odds between preterm LBW and term-born NBW children was not statistically significant (OR, 1.5; 95% CI, 0.8-2.9). Further analysis found no differences in the odds of unmet healthcare needs among the 4 study groups (Table III; F-test P = .711), but did show that children with no insurance or discontinuous insurance were much more likely to have Havinga, Tumin, and Peedin
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Table I. Child characteristics according to gestational age and birth weight Characteristics
Preterm VLBW (n = 186)
Preterm LBW (n = 668)
Preterm NBW (n = 853)
Term-born NBW (n = 15 237)
0.48 (0.33-0.64) 0.01 (0.00-0.03) 2.4 (1.8-3.0) 0.51 (0.35-0.66)
0.18 (0.13-0.26) 0.01 (0.00-0.07) 2.4 (2.2-2.7) 0.53 (0.45-0.61)
0.13 (0.10-0.19) 0.01 (0.00-0.02) 2.4 (2.2-2.7) 0.40 (0.32-0.49)
0.09 (0.08-0.10) 0.01 (0.01-0.02) 2.5 (2.4-2.6) 0.49 (0.47-0.51)
0.16 (0.06-0.36) 0.47 (0.32-0.62) 0.17 (0.10-0.29) 0.20 (0.08-0.43)
0.27 (0.19-0.36) 0.45 (0.37-0.53) 0.16 (0.10-0.26) 0.12 (0.09-0.16)
0.31 (0.21-0.43) 0.49 (0.40-0.58) 0.09 (0.05-0.14) 0.11 (0.06-0.20)
0.20 (0.18-0.22) 0.59 (0.57-0.61) 0.09 (0.08-0.11) 0.12 (0.11-0.13)
0.18 (0.07-0.37) 0.24 (0.11-0.44) 0.28 (0.18-0.41) 0.30 (0.19-0.45)
0.20 (0.13-0.28) 0.21 (0.16-0.28) 0.27 (0.20-0.36) 0.32 (0.25-0.39)
0.22 (0.14-0.34) 0.27 (0.19-0.35) 0.22 (0.17-0.28) 0.29 (0.22-0.38)
0.15 (0.13-0.16) 0.25 (0.24-0.27) 0.29 (0.28-0.31) 0.30 (0.29-0.32)
0.55 (0.38-0.70) 0.45 (0.29-0.61) 0.01 (0.00-0.03) 0.01 (0.00-0.02)
0.64 (0.56-0.72) 0.29 (0.22-0.37) 0.02 (0.01-0.06) 0.04 (0.02-0.12)
0.61 (0.51-0.71) 0.35 (0.25-0.46) 0.01 (0.01-0.03) 0.02 (0.01-0.06)
0.67 (0.65-0.69) 0.26 (0.25-0.28) 0.04 (0.03-0.05) 0.03 (0.03-0.04)
0.33 (0.21-0.47) 0.28 (0.17-0.41) 0.34 (0.18-0.54) 0.05 (0.02-0.13) 0.97 (0.93-0.99)
0.44 (0.36-0.52) 0.30 (0.23-0.38) 0.19 (0.13-0.27) 0.07 (0.04-0.12) 0.98 (0.91-0.99)
0.47 (0.38-0.56) 0.26 (0.20-0.33) 0.23 (0.14-0.35) 0.04 (0.03-0.07) 0.98 (0.97-0.99)
0.47 (0.45-0.49) 0.33 (0.31-0.34) 0.15 (0.14-0.16) 0.06 (0.05-0.06) 0.98 (0.98-0.99)
0.24 (0.12-0.41) 0.19 (0.11-0.30) 0.39 (0.25-0.56) 0.18 (0.10-0.31)
0.19 (0.14-0.26) 0.20 (0.15-0.27) 0.31 (0.24-0.38) 0.30 (0.22-0.38)
0.15 (0.10-0.21) 0.20 (0.16-0.26) 0.39 (0.31-0.48) 0.26 (0.17-0.38)
0.17 (0.16-0.18) 0.23 (0.22-0.24) 0.36 (0.34-0.37) 0.24 (0.23-0.26)
SHCN status Unmet healthcare needs Age (years, weighted mean) Female Race/ethnicity Hispanic Non-Hispanic white Non-Hispanic black Other Parents’ highest educational attainment High school or less Some college or 2-year degree 4-Year college degree Graduate education or degree Child’s health insurance coverage in past 12 months Continuous private Continuous public Discontinuous None Family had hard time affording basic needs since child’s birth Never Rarely Somewhat often Often Child born in US Region of residence in US Northeast Midwest South West Values are weighted percentage or mean (95% CI).
unmet healthcare needs (Table III; OR, 8.8 [95% CI, 2.038.8] and OR, 14.0 [95% CI, 7.3-27.2], respectively). Additionally, families who reported that they had difficulties affording basic needs somewhat often or often were more likely to report unmet healthcare needs (Table III; OR, 3.2 [95% CI, 1.2-8.1] and OR, 8.7 [95% CI, 3.2-23.7], respectively). Last, the odds of having unmet healthcare needs increased by 50% with each additional year of the child’s age (OR, 1.5; 95% CI, 1.2-1.8).
Discussion Prematurity is associated with increased mortality and morbidity, as well as increased SHCN, compared with children born at term. These findings are exponentially increased in VLBW infants, with our analysis of a nationally representative survey demonstrating a 10-fold increase of the prevalence of SHCN when compared with term, NBW controls. Additionally, preterm VLBW children had >6 times the odds of having SHCN than preterm NBW children. These data are consistent with several studies indicating increased rates of neurodevelopmental impairment, in addition to other morbidities directly correlating with decreasing birth weight or gestational age.17 However, it is encouraging that rates of unmet healthcare needs are low in the VLBW population, and, indeed, no higher (on caregiver report) than in
LBW/NBW children born preterm, or in children born at term and NBW. These results suggest that current efforts to engage preterm children in follow-up care are appropriately addressing the needs of children born preterm and VLBW. However, the increasing rate of preterm birth, as well as increased survivability of infants at younger gestational ages, will likely contribute to increased pediatric healthcare use in developed countries. Advances in neonatology have led to the increased survivability of extremely preterm neonates, with some centers resuscitating infants born as early as 22 weeks of gestation. However, survival without neurologic impairment presents a further challenge in this group: a single-center study found that only 22% of infants born at <26 weeks survived without disability.18 The high incidence of disability in this population is associated with a wide range of short term morbidities caused by prematurity, including chronic lung disease, retinopathy of prematurity, and necrotizing enterocolitis. Long-term morbidities, such as central nervous system injury (intraventricular hemorrhage, periventricular leukomalacia) present an increased risk of adverse outcomes such as continuing neurodevelopmental impairment later in childhood.19 A meta-analysis by Jarjour et al found that extreme prematurity (22-25 weeks of gestation) was associated with high rates of severe neurodevelopmental impairment at various stages of development, through adulthood (17%59%), and that rates of surviving with minimal or no
Birth Weight Gradient in Parent-Reported Special Healthcare Needs among Children Born Preterm
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Table II. Multivariable logistic regression of SHCN status Characteristics Gestational age and birth weight Term-born NBW Preterm NBW Preterm LBW* Preterm VLBW† Age (years) Female Race/ethnicity Hispanic Non-Hispanic white Non-Hispanic black Other Parents’ highest educational attainment High school or less Some college or 2-year degree 4-Year college degree Graduate education or degree Child’s health insurance coverage in past 12 months Continuous private Continuous public Discontinuous None Family had hard time affording basic needs since child’s birth Never Rarely Somewhat often Often Child born in US Region of residence in US Northeast Midwest South West
OR (95% CI) Ref. 1.6 (1.04-2.40) 2.4 (1.5-4.0) 10.0 (4.9-20.3) 1.3 (1.3-1.4) 0.7 (0.5-0.8) Ref. 0.9 (0.6-1.2) 1.2 (0.7-1.8) 0.8 (0.5-1.2) Ref. 1.2 (0.8-1.8) 0.9 (0.6-1.3) 1.3 (0.9-1.9) Ref. 1.2 (0.9-1.6) 1.0 (0.5-1.9) 0.6 (0.2-1.7) Ref. 1.4 (1.1-1.8) 2.2 (1.6-3.1) 2.6 (1.7-3.8) 0.7 (0.3-1.6) Ref. 1.1 (0.8-1.5) 1.0 (0.8-1.4) 0.7 (0.5-1.1)
P value
.031 <.001 <.001 <.001 <.001 .343 .528 .295 .415 .694 .120
.192 .973 .333
.004 <.001 <.001 .376 .647 .851 .138
*OR vs preterm NBW = 1.5 (95% CI, 0.8-2.9; P = .182). †OR vs preterm NBW = 6.3 (95% CI, 2.8-14.2; P < .001). OR vs preterm LBW = 4.1 (95% CI, 1.7-9.7; P = .001).
impairment decreased exponentially with decreasing gestational age.20 The risk of cerebral palsy, in particular, increased from approximately 1% at 34 weeks of gestation to 20% at 26 weeks gestation or earlier.19 Other neurodevelopmental disabilities that may be present in children born preterm include intellectual disability, blindness, sensorineural hearing loss, attention disorders, and other mental health problems, as well as cognitive, language, visual-perceptual, sensory, and learning deficits.17,21,22 Although many of these SHCN may resolve with age (as evidenced by decreased hospital admissions and outpatient visits in 1 study),17 a significant number of children born preterm can be expected to continue having SHCN throughout childhood and even into adulthood. Previous studies have characterized healthcare use of children born preterm using clinical, administrative, and school databases.17,19 However, surveying parents about perceived healthcare needs and whether these needs are met for children born preterm adds important information not otherwise available from databases that only record the services that are provided. Information on SHCN status also provides 4
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Table III. Multivariable logistic regression of unmet healthcare needs in past 12 months Characteristics Gestational age and birth weight Term-born NBW Preterm NBW Preterm LBW* Preterm VLBW† Age (years) Female Race/ethnicity Hispanic Non-Hispanic white Non-Hispanic black Other Parents’ highest educational attainment High school or less Some college or 2-year degree 4-Year college degree Graduate education or degree Child’s health insurance coverage in past 12 months Continuous private Continuous public Discontinuous None Family had hard time affording basic needs since child’s birth Never Rarely Somewhat often Often Child born in US Region of residence in US Northeast Midwest South West
OR (95% CI)
P value
Ref. 0.7 (0.3-1.7) 0.8 (0.2-2.8) 0.5 (0.1-3.0) 1.5 (1.2-1.8) 0.8 (0.5-1.5)
.378 .693 .454 <.001 .496
Ref. 0.6 (0.3-1.3) 1.1 (0.5-2.5) 0.6 (0.2-1.4)
.158 .764 .225
Ref. 1.0 (0.4-2.7) 1.1 (0.4-2.9) 1.6 (0.6-4.4)
.946 .853 .315
Ref. 1.1 (0.5-2.3) 14.0 (7.3-27.2) 8.8 (2.0-38.8)
.851 <.001 .004
Ref. 0.9 (0.3-2.2) 3.2 (1.2-8.1) 8.7 (3.2-23.7) 0.9 (0.2-3.3)
.757 .015 <.001 .853
Ref. 2.5 (1.04-5.8) 2.3 (0.9-5.7) 3.3 (1.04-10.5)
.041 .068 .043
*OR vs preterm NBW = 1.2 (95% CI, 0.3-5.6; P = .839). †OR vs preterm NBW = 0.8 (95% CI, 0.1-5.6; P = .795). OR vs preterm LBW = 0.7 (95% CI, 0.15.9; P = .707).
a tool for physicians to discuss long-term neonatal outcomes with parents in the early stages of their child’s treatment. For healthcare systems, understanding the scope of healthcare needs and the extent to which these needs are currently met can help plan appropriate provision of follow-up care after neonatal intensive care unit (NICU) discharge. At our own institution and other centers, NICU clinics provide an opportunity for follow-up care through the early toddler years. Additionally, developmental-behavioral pediatricians provide services to children born preterm who continue to experience significant developmental delays. Due to the low number of subspecialists currently practicing in the rural area served by our center, developmental delays are often managed by primary care pediatricians. The high number of children born VLBW and preterm with caregiverreported SHCN speaks to an ongoing need for behavioraldevelopmental pediatricians to address the future healthcare needs of this population. Although VLBW and preterm birth were strongly associated with SHCN status in children ages 0-5 years, an encouraging finding from our study was that neither characteristic was associated with the risk of unmet healthcare needs. It is Havinga, Tumin, and Peedin
- 2019 possible that being admitted to the NICU provides an enrollment into the healthcare system and supports adequate follow-up. Medically complex children and children born extremely preterm are more likely to be admitted to a large, academic NICU, where pediatric subspecialists and primary care physicians are more readily available. Additionally, families of medically complex children often meet subspecialists during their hospital stay, helping to build familiarity and trust, and facilitate scheduling follow-up visits with these subspecialists. Finally, NICU staff often arrange specialty follow-up visits before the discharge of the infant, which ensures that NICU patients’ medical needs are met before their discharge home. However, as demonstrated in our secondary analysis, a lack of health insurance or discontinuous health insurance were strongly associated with the lack of reporting unmet healthcare needs. The impact of poverty and uninsurance or underinsurance among children who were born preterm and VLBW can mean that these patients are lost to follow-up and that their long-term outcomes are less favorable than what could be achieved if their continuous access to the healthcare system could have been assured. Although our study provides a timely characterization of SHCN among a large, nationally representative sample of children born preterm, our conclusions are limited by some aspects of the study design and data analysis. First, the study was subject to recall bias, because the parents were required to recall significant information about their child at birth, especially birth weight. Additionally, relying on parental report of their child’s illnesses could prove inaccurate if parents have a poor understanding of their child’s medical conditions. However, this could also be viewed as a strength of the survey, as it helps NICU providers to better understand parental perspectives of their child’s health status and healthcare needs. Likewise, parent reports of healthcare availability may be biased by families’ understanding of what medical specialists are appropriate for their child’s health needs, but this parental perspective is nevertheless valuable for those who provide care to this population. Additional limitations include coverage of a noninstitutionalized population, lack of detailed data on NICU stay, and lack of data on specific healthcare services received after discharge from the NICU. Finally, our study focused on gradations in birth weight rather than gestational age among children born preterm, but the 2 measures are not necessarily interchangeable in some situations (eg, intrauterine growth restriction). In conclusion, the NSCH survey found a 2- to 10-fold increase in the likelihood of SHCN reported in LBW and VLBW premature infants when compared with their term NBW counterparts. These data are consistent with the literature reporting increased sensory impairment, NDD, mental health illnesses, and so on. The survey found that all preterm children, regardless of how much specialized healthcare they required, reported equal and appropriate access to family centered care. Furthermore, the odds of having unmet healthcare needs increased by 50% for each additional year of the child’s age. This could be caused by loss to follow-up
ORIGINAL ARTICLES as children age, potentially related to loss of health insurance coverage or changes in insurance. Among children born prematurely, it is possible that the extent and severity of their SHCN decrease with age and that parents are less likely to maintain contact with subspecialty physicians. Future areas for research and advocacy should focus on increasing resources for those with developmental impairment, because decreasing mortality in the NICU will certainly increase the number of NICU graduates with comorbidities. Additionally, pediatric residency training programs may need to increase education regarding caring for NICU graduates with complications, as currently, many of these children are being managed by primary pediatricians. n Submitted for publication Jul 17, 2019; last revision received Sep 15, 2019; accepted Sep 27, 2019. Reprint requests: Jaclyn Havinga, MD, Department of Neonatology, Vidant Medical Center and East Carolina University, 2100 Stantonsburg Rd, Greenville, NC. E-mail: [email protected]
References 1. McCormick MC, Litt JS, Smith VC, Zupancic JA. Prematurity: an overview and public health implications. Annu Rev Public Health 2011;32: 367-79. 2. Demissie K, Rhoads GG, Ananth CV, Alexander GR, Kramer MS, Kogan MD, et al. Trends in preterm birth and neonatal mortality among blacks and whites in the United States from 1989 to 1997. Am J Epidemiol 2001;154:307-15. 3. Ely DM, Driscoll AK. Infant mortality in the United States, 2017: data from the period linked birth/infant death file. Nat Vital Stat Rep 2019;68:10. 4. Msall ME, Sobotka SA, Dmowska A, Hogan D, Sullivan M. Life course health development outcomes after prematurity: developing a community, clinical, and translational research agenda to optimize health, behavior, and functioning. In: Halfton N, Forrest C, Lerner R, Faustman E, eds. Handbook of life course health development. New York: Springer; 2018. p. 321-48. 5. Pursely DM, McCormick MC. Bending the arc for the extremely low gestational age newborn. Pediatr Res 2018;83:751-3. 6. Kelly MM. National perspective of health outcomes of 8- to 11-year-old children born prematurely and their full-term peers. J Pediatr Nurs 2016;31:422-9. 7. Anderson JG, Baer RJ, Partridge JC, Kuppermann M, Franck LS, Rand L, et al. Survival and major morbidity of extremely preterm infants: a population-based study. Pediatrics 2016;138:e20154434. 8. Boyle EM, Poulsen G, Field DJ, Kurinczuk JJ, Wolke D, Alfirevic Z, et al. Effects of gestational age at birth on health outcomes at 3 and 5 years of age: population based cohort study. BMJ 2012;344:e896. 9. Holsti A, Adamsson M, H€aggl€ of B, Farooqi A, Serenius F. Chronic conditions and health care needs of adolescents born at 23 to 25 weeks’ gestation. Pediatrics 2017;139:e20162215. 10. Hack M, Taylor HG, Drotar D, Schluchter M, Cartar L, Andreias L, et al. Chronic conditions, functional limitations, and special health care needs of school-aged children born with extremely low-birth-weight in the 1990s. JAMA 2005;294:318-25. 11. Boulet SL, Schieve LA, Boyle CA. Birth weight and health and developmental outcomes in US children, 1997-2005. Matern Child Health J 2011;15:836-44. 12. Data Resource Center For Child And Adolescent Health. The National Survey of Children’s Health. http://childhealthdata.org/learn-aboutthe-nsch/NSCH. Accessed July 15, 2019. 13. Kelly MM. Health and educational implications of prematurity in the United States: National Survey of Children’s Health 2011/2012 data. J Am Assoc Nurse Pract 2018;30:131-9.
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14. Miller R, Tumin D, Hayes D Jr, Uffman JC, Raman VT, Tobias JD. Unmet need for care coordination among children with special health care needs. Popul Health Manag 2019;22:255-61. 15. Schieve LA, Tian LH, Rankin K, Kogan MD, Yeargin-Allsopp M, Visser S, et al. Population impact of preterm birth and low birth weight on developmental disabilities in US children. Ann Epidemiol 2016;26: 267-74. 16. Tumin D, Miller R, Raman VT, Uffman JC, Tobias JD. Patterns of health insurance discontinuity and children’s access to health care. Matern Child Health J 2019;23:667-77. 17. Kutz P, Horsch S, K€ uhn L, Roll C. Single-centre vs. population-based outcome data of extremely preterm infants at the limits of viability. Acta Paediatr 2009;98:1451-5.
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18. Jarjour J. Neurodevelopmental outcome after extreme prematurity: a review of the literature. Pediatr Neurol 2015;52:143-52. 19. Allen MC. Neurodevelopmental outcomes of preterm infants. Curr Opin Neurol 2008;21:123-8. 20. Robertson CM, Watt MJ, Yasui Y. Changes in the prevalence of cerebral palsy for children born very prematurely within a population-based program over 30 years. JAMA 2007;297:2733-40. 21. Klitkou ST, Iversen T, Stensvold HJ, Rønnestad A. Use of hospital-based health care services among children aged 1 through 9 years who were born very preterm – a population based study. BMC Health Serv Res 2017;17:571. 22. Patel RM. Short and long-term outcomes for extremely preterm infants. Am J Perinatol 2016;33:318-28.
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