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Population-Based Assessments of Ophthalmologic and Audiologic Follow-up in Children With Very Low Birth Weight Enrolled in Medicaid: A Quality-of-Care Study

^a Departments of Pediatrics and Maternal and Child Health, Boston Medical Center and Boston University Schools of Medicine and Public Health, Boston, Massachusetts
^b Rand Health, Santa Monica, California
^c Division of General Internal Medicine, Department of Medicine
^d Department of Pediatrics, Mattel Children's Hospital, David Geffen School of Medicine
^e Department of Health Services, School of Public Health, University of California, Los Angeles, California

	ABSTRACT

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OBJECTIVE. The purpose of our work was to determine whether children with very low birth weight (<1500 g) who are at high risk for vision and hearing problems and enrolled in Medicaid receive recommended follow-up vision and hearing services and to examine predictors of services.

PATIENTS AND METHODS. We conducted a retrospective analysis of 2182 children born in South Carolina from 1996 to 1998 with birth weights of 401 to 1499 g, gestations of 24 weeks, and survival of 90 days of life. Receipt of services for Medicaid-enrolled children was assessed by using a linked data set that included files from vital records, death certificates, Medicaid, Chronic Rehabilitative Services, and the Early Intervention Program. We assessed the receipt of hearing rehabilitation by 6 months of age for children with nonconductive hearing loss and routine ophthalmologic examination between ages of 1 and 2 years for all children with very low birth weight. Multivariate logistic regression was restricted to ophthalmologic examinations because of sample size.

RESULTS. Among children with very low birth weight with nonconductive hearing loss, 20% received hearing rehabilitation by 6 months of age. Twenty-three percent of children with very low birth weight received an ophthalmologic examination between the ages of 1 and 2 years. Limiting our analysis to children <1000 g or extending the measurement period to 7 months (hearing) and age 3 years (vision) did not substantially increase the percentage of children receiving the services. The receipt of an ophthalmologic examination was associated positively with Medicaid enrollment by the time of hospital discharge and birth in a level-3 hospital and negatively associated with higher birth weight, an Apgar score of 7, and black maternal race. Among children born at <1000 g, all of whom were eligible for the Early Intervention Program, the receipt of an ophthalmologic examination was positively associated with program enrollment.

CONCLUSIONS. There is a shortfall in the provision of critical services for children with very low birth weight. These findings reinforce the Institute of Medicine's concerns regarding inadequate outcome data and health care services for preterm infants and support the importance of enrollment in the Early Intervention Program for children with very low birth weight.

Key Words: low birth weight • quality of care • early intervention

Abbreviations: VLBW—very low birth weight • ELBW—extremely low birth weight • ROP—retinopathy of prematurity • EIP—Early Intervention Program • CRS—chronic rehabilitative services • ICD-9—International Classification of Diseases, Ninth Revision • OR—odds ratio

Approximately 60000 infants with very low birth weight (VLBW; <1500 g) are born each year in the United States.¹ Almost all are premature (<37 weeks' gestation) and at greater risk than term infants for health and developmental problems and premature death. Half of these infants are extremely low birth weight (ELBW; <1000 g) and are at the greatest risk for disabilities^1–3 However, no data are available about the quality of care these infants receive once discharged from the hospital. Recognizing this problem, the Institute of Medicine's 2006 report on preterm birth⁴ described the lack of services and outcomes data and called for improvement in the quality of care of preterm infants.

Improving quality of care for important medical problems such as vision and hearing loss that disproportionately affect children with VLBW^4,5 can greatly improve their health and long-term developmental trajectory. Timely diagnosis and treatment for eye disease^6–12 and hearing loss^13–15 can ameliorate or eliminate their negative sequelae. If left untreated, these disabilities may lead to speech and language problems, behavior problems, and learning disabilities, all of which can harm school performance.^10,13

It is estimated that the prevalence of any ophthalmic morbidity (eg, retinopathy of prematurity [ROP], reduction in visual acuity, strabismus, myopia, color vision defects, or visual field defects) is 50% among children with VLBW, with the highest rate associated with those with severe ROP (stage 3 or 4).¹⁶ However, children with VLBW without ROP are still at significant risk for having visual impairment, and the risk increases with decreasing gestational age.¹⁰ Premature infants have significantly worse visual acuity and contrast sensitivity.^17,18 Incidence of strabismus is also higher among preterm children with VLBW, with rates ranging from 14%¹⁸ to 20%.¹⁹ Refractory errors were found in 30% of preterm children with VLBW (compared with 8% of term children). Preterm children with VLBW also had significantly lower contrast sensitivity, even among those without ROP or neurologic disorders.²⁰ Similarly, the prevalence of hearing impairment is high among children with VLBW, with a particularly elevated rate of 11% among children with ELBW.^10,21,22 Therefore, ensuring early detection and treatment of vision and hearing problems should be high on the quality-of-care agenda for children with VLBW.

In the United States, most NICUs offer high-risk follow-up clinics (eg, 81% of Vermont Oxford Network hospitals),²³ but few of the clinics follow children past 1 year of age. Also, it is not known what proportion of ELBW children return to the high-risk follow-up clinic after discharge. Preschool vision screening is recommended for all children,^24,25 yet the rate of vision screening is low in the primary care setting because of the difficulty of screening young children, lack of experience with screening tests, and high numbers of false-positives associated with vision screening.^26–28 Attar et al²⁹ have shown that in 1 hospital in the United States, premature infants not screened for ROP in the NICU had greater risk for missing follow-up care compared with infants who had their first retinal examination in the NICU. Infants transported back to the community hospital were significantly more likely to miss follow-up eye care compared with infants discharged from the regional center.²⁹ Similarly, although universal newborn hearing screening is now recommended in the United States,³⁰ a previous study has documented that the proportion of returns to follow-up for infants with risk factors for hearing loss or who failed a hearing screen was suboptimal (64%).³¹

In this study, we constructed a data set that linked all of the health services files relevant to the care of children with VLBW receiving Medicaid in the state of South Carolina and used previously developed quality-of-care indicators³² to determine the proportion of children with VLBW with nonconductive hearing loss who received hearing rehabilitation by 6 months of age and the proportion of all of the children with VLBW who received routine ophthalmologic examination between ages 1 and 2 years. We also examined factors associated with receiving timely vision follow-up care.

	METHODS

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Data Sources, Study Population, and Study Period
With assistance from the Office of Research and Statistics in South Carolina, we created a data set that linked files from vital records, death certificates, Medicaid, Early Intervention Program (EIP), and chronic rehabilitative services (CRS) for each child with VLBW using a unique deidentified identification number provided by the state. The EIP provides hearing and vision services for children 0 to 36 months of age with developmental delay or disabilities. CRS also provides speech and hearing services, including hearing aid, to children <21 years of age. We included all of the children with VLBW with birth weight between 401 and 1499 g,³³ gestation 24 weeks, survival for the first 90 days of life,^33,34 and birth dates between January 1, 1996, and December 31, 1998. The institutional review boards at University of California Los Angeles and Rand approved the study.

Each child was followed from birth to 3 years of age. This linked data set allowed us to capture all of the services for children with VLBW who were continuously enrolled in Medicaid. During the 6-year period covered in this study (ie, January 1996 until December 2001, when children born in December 1998 reached age 3), 97% of children covered by South Carolina's Medicaid program were enrolled in fee-for-service plans.

Quality Indicators and Measuring Adherence to Indicators
Two quality-of-care indicators, one for screening of ophthalmologic problems and another for the treatment of hearing loss, were used in the study. These indicators were derived from our previous work using the Rand/University of California Los Angeles–modified Delphi method,³² which has been demonstrated to be a valid and reliable method for developing quality indicators.^7,35–37 For early detection of vision problems, the indicator was as follows: "An ophthalmologic examination should be performed at least once between ages 1 and 2 by an ophthalmologist."³² In applying this indicator, we did not require that services be provided only by an ophthalmologist, because it was not possible to ascertain who provided the service using the administrative data set. The indicator for early treatment of hearing loss was as follows: "For infants with a diagnosis of a nonconductive hearing loss, rehabilitation should be started by 6 months of chronologic age."³² Hearing rehabilitation is defined as the fitting of a hearing aid or related treatments to improve hearing.

We used the International Classification of Diseases, Ninth Revision (ICD-9), codes to identify specific diagnoses relevant to each of the quality indicators. Services or procedures provided to eligible children with VLBW were identified using the Healthcare Common Procedure Coding System codes, ICD-9 procedure codes, and the Current Procedure Terminology IV codes. EIP and CRS agencies had their own diagnoses and procedures codes, and we used their codes to search for vision and hearing services provided through these agencies (see Table 1 for terms used to search for diagnosis and treatment codes for each quality indicator).

View larger version (28K): [in this window] [in a new window]   FIGURE 1 Study flowchart. BW indicates birth weight.

Inferential Statistical Analysis
Within VLBW and ELBW strata, we conducted bivariate and multivariate logistic regression analyses to investigate which factors were associated with adherence to the recommended ophthalmologic examination between ages 1 and 2 years. For multivariate analysis, we adjusted for baseline maternal and child sociodemographic variables from the children's vital records (eg, maternal age, race, and education).^38–40 We included the child's gender, birth weight, and 5-minute Apgar score.^10,41,42 We also adjusted for whether the child was part of a multiple gestation birth. In addition, we used dummy variables for ordinal birth hospital levels, which reflect neonatal capabilities (with 3 being the most sophisticated and 1 the least). Higher-level hospitals may have more experience with referring children with VLBW to specialty services. We also included a variable for enrollment in Medicaid at hospital discharge, because those who enrolled early may be more likely to enroll in other programs for which they are eligible or to have someone available to help them apply (eg, social worker).

Because all of the children with ELBW in South Carolina are eligible for the EIP, we conducted a subanalysis of children with ELBW to investigate whether enrollment in the EIP was associated with adherence to ophthalmologic examinations. We did not model adherence to hearing rehabilitation for children with nonconductive hearing loss, because the number of eligible children for that service was small. Stata 9.0 (Stata Corp, College Station, TX)⁴³ was used for all of the analyses.

Treatment of Missing Data
For maternal and child variables, missing responses per item averaged 1% and never exceeded 2%. Missing values for all of the subjects were imputed using the multiple-imputations-by-chained-equations approach in Stata.⁴⁴

	RESULTS

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Sample Characteristics
A total of 2182 children had birth weights of 401 to 1499 g, gestations of 24 weeks, survival for the first 90 days of life,³⁴ and birth dates between January 1, 1996, and December 31, 1998. The mean birth weight was 1070 g (SD: 277). The mean gestational age was 28.9 weeks (SD: 3.1). See Table 2 for sample characteristics.

View this table: [in this window] [in a new window]   TABLE 2 Characteristics of All Children With Birth Weights Between 401 and 1499 g, Gestation of 24 Weeks, Survival for the First 90 days of Life, and Born in South Carolina From January 1996 to December 1998

A total of 1052 children with VLBW were continuously enrolled in Medicaid between ages 1 and 2 years. All of them were eligible for the ophthalmologic examination during the second year of life.

Adherence to Quality Indicators
Among those eligible for the hearing quality indicator, 20% (48 of 241) received the service by 6 months of age. Allowing a 1-month grace period (ie, rehabilitation by 7 months of age) increased adherence to 24%.

Among children with VLBW eligible for the vision examination, 23% (241 of 1052) received a recommended ophthalmologic examination. If the adherence period was expanded to start at 11 months and go to 25 months, the percentage receiving the service among those continuously enrolled in Medicaid increased to 27%. Similarly, if the adherence period was further expanded from 11 months to 36 months, the percentage receiving the service increased to 37%.

When we restricted the analysis to children with ELBW, 29% of eligible children (35 of 122) received hearing rehabilitation during the first 6 months, and 29% of eligible children (135 of 465) received an ophthalmologic examination between ages 1 and 2 years. Even with the most generous grace periods (ie, hearing rehabilitation by 7 months and ophthalmologic examination between 11 and 36 months), these percentages rose to 33% and 46%, respectively.

Factors Associated With Adherence to Ophthalmologic Examinations
In bivariate analysis, the receipt of an ophthalmologic examination among children with VLBW was positively associated with enrollment in Medicaid at hospital discharge and negatively associated with increasing birth weight, multiple gestation births, and an Apgar score of 7 (Table 3). Similarly, the receipt of an ophthalmologic examination among children with ELBW was positively associated with enrollment in Medicaid at hospital discharge, enrollment in the EIP during the first year of life (for which all children with ELBW are eligible), and negatively associated with multiple gestational births (Table 3).

	DISCUSSION

TOP ABSTRACT METHODS RESULTS DISCUSSION REFERENCES

 
Ours is the first population-based study of ophthalmologic and audiologic follow-up in Medicaid-enrolled children with VLBW. We found that less than one fourth of children with VLBW with Medicaid in South Carolina received the recommended ophthalmologic examination during ages 1 to 2 years. Moreover, less than one fourth of children with VLBW who were diagnosed with a nonconductive hearing loss received hearing rehabilitation by 6 months. Even when we limited our analysis to the smallest children with the highest risks, children with ELBW (<1000 g), the receipt of services only went up slightly. The gaps in these critical services support the Institute of Medicine report's emphasis on the need to improve the quality of care for preterm infants. These findings also have important implications for the health, development, and educational outcomes of these children.

Hearing loss in children affects cognition, educational level, social emotional development, and family-child interaction.¹³ Early identification of hearing loss and appropriate intervention within the first 6 months of life have been demonstrated to prevent many of the adverse consequences and facilitate language acquisition.^14,15,45 Moreover, the lifetime cost to society of prelingual onset of profound deafness is estimated to be $1 million per subject, largely because of special education and reduced work productivity.⁴⁶ Interventions such as cochlear implants in profoundly deaf children have a positive effect on quality of life at reasonable costs and seem to result in a net savings to society.⁴⁷ Thus, timely assessment and treatment for hearing loss are particularly important for children with VLBW in view of their increased risk of hearing loss⁴⁸ and availability of effective treatments.¹³

Similarly, the prevalence of ophthalmologic morbidity from prematurity is >50%,^{16–20,49–52} and a recent population-based ophthalmologic follow-up study¹⁸ discussed the possibility of additional ophthalmic assessment before the routine 4.5-year assessment in the United Kingdom.⁵³ Given that intensive screening and treatment for amblyopia in term children (at 8, 12, 18, 25, 31, and 37 months) were shown to be associated with better acuity in the amblyopic eye and lower prevalence of amblyopia at 7.5 years of age (in comparison with screening at 37 months only),¹² early treatment of amblyopia in preterm children may be similarly important. Moreover, treatments for amblyopia^54,55 are highly cost-effective.

In our study, we also found variations in the receipt of ophthalmologic services. For example, enrollment in Medicaid programs by the time of hospital discharge (for children with VLBW and ELBW) and enrollment in the EIP during the first year of life (for children with ELBW) were strongly associated with the receipt of needed ophthalmologic examinations. In addition, children with VLBW with black mothers, higher birth weight, and higher Apgar scores were less likely to receive ophthalmologic examinations, whereas those born in level-3 hospitals were more likely to receive them. The negative correlation between the receipt of vision services and higher birth weight and Apgar scores may reflect the lower prevalence of visional impairment in these populations. On the other hand, the positive association between the receipt of vision services and birth in a level-3 hospital, enrollment in Medicaid by the time of hospital discharge, and enrollment in the EIP may highlight the importance of enrolling eligible infants in Medicaid and EIP services. This may also suggest that stronger efforts may be needed to screen children for disabilities if they were born in nonlevel-3 hospitals or had black mothers. However, the overall findings indicate that children from all backgrounds may need better screening for disabilities.

There are several limitations to our study. First, the study covers a single state and included only children continuously enrolled in Medicaid during the assessment period for each quality indicator; thus, this result may not generalize to other states or other populations. Nonetheless, this is the first study showing such a severe gap in the provision of key services for this population. This finding suggests that the issue of providing high-quality follow-up care to children with VLBW should be examined more broadly.

Second, administrative claims and encounter data capture only services that have been provided and, thus, do not indicate whether providers made referrals that were never executed. Failure to complete referrals could be because of limited access to providers, lack of interest on the part of parents, or other factors. For example, because the prevalence of ophthalmologic morbidity is lower among infants with heavier birth weight, birth weight and the severity of the visual deficit may have an impact on whether a parent attends an appointment. The gap found in the receipt of services suggests that a more in-depth exploration of the barriers to care faced by VLBW families is needed, particularly given the high risk of neurosensory disability in this group. The use of administrative data, however, did overcome some of the challenges of tracking children with VLBW's complex care in the era of the Health Insurance Portability and Accountability Act in the United States. We have shown that the strategy of linking different data sets can be used for the purpose of quality-of-care assessment.

Third, we recognize that quality-of-care assessment using administrative data can be sensitive to coding practices. However, because 97% of patients with Medicaid were under fee-for-service health plans during the study period, there is an incentive for providers to submit claims for provided services to receive payment. Furthermore, in our procedure-code search, we took a lenient approach in giving credit to any claims that may suggest the use of indicated services. For example, we did not require the use of an ophthalmologist for ophthalmologic examinations, although the original indicator had such a requirement. Moreover, we only examined whether children with diagnosed nonconductive hearing loss received hearing rehabilitation by 6 months of age, but there were likely to have been children with undiagnosed hearing loss who had not yet been properly screened during the first 6 months. Thus, the current gaps in services identified are likely to be conservative. Regardless, the use of administrative claims and encounters data provided the first evidence that there is a large gap in the provision of key health services for children with VLBW enrolled in Medicaid.

	ACKNOWLEDGMENTS

 
This work was supported by the National Research Service Award fellowship at University of California Los Angeles and by the Centers for Disease Control and Prevention grant U48/DP000056 (to Dr Schuster).

We thank Pete Bailey, MPH, Sarah Crawford, MS, and Heather Kirby from South Carolina Office of Research and Statistics for assistance with data set preparation and Howard Bauchner, MD (Boston Medical Center), Harvey Kayman, MD, MPH (South Carolina Bureau of Maternal and Child Health), Nelson Lim, PhD (Rand), Jeannette Rogowski, PhD (University of Medicine and Dentistry of New Jersey), Michael Silverstein, MD, MPH (Boston Medical Center), and Barry Zuckerman, MD (Boston Medical Center) for review of the article.

	FOOTNOTES

 
Accepted Jul 16, 2007.

Address correspondence to C. Jason Wang, MD, PhD, Boston Medical Center, 91 E Concord St, 4th Floor, Boston, MA 02118. E-mail: jason.wang{at}bmc.org

Dr Schuster's current affiliation is Children's Hospital Boston and Harvard Medical School, Boston, Massachusetts.

The authors have indicated they have no financial relationships relevant to this article to disclose.

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