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Racial and Ethnic Disparities in Indicators of a Primary Care Medical Home for Children
Medical Home
Racial and Ethnic Disparities in Indicators of a Primary Care Medical Home for Children Jean L. Raphael, MD, MPH; B. Ashleigh Guadagnolo, MD, MPH; Anne C. Beal, MD, MPH; Angelo P. Giardino, MD, PhD, MPH Objective.—Racial/ethnic disparities in access to care across a broad range of health services have been well established. In adults, having a medical home has been shown to reduce disparities. The objective of this study was to assess the extent to which children of different race/ethnicities receive primary care consistent with a medical home. Methods.—We conducted a secondary analysis of 84 101 children, ages 0–17, from the 2003–2004 National Survey of Children’s Health, a nationwide household survey. The primary independent variable was race/ethnicity of the child. The main dependent variable was a medical home as defined by the American Academy of Pediatrics. Multiple logistic regression was conducted to investigate associations between race/ethnicity and having a medical home. Results.—The odds of having a medical home were lower for non-Hispanic black (odds ratio [OR] 0.76, 95% confidence
interval [95% CI] 0.69–0.83), Hispanic (OR 0.80, 95% CI 0.72–0.89), and other (OR 0.77, 95% CI 0.69–0.87) children compared with non-Hispanic white children after adjusting for sociodemographic variables. Specific components of a medical home for which minority children had a lower odds (P < .01) of having compared with white children included having a personal provider, a provider who always/usually spent enough time with them, and a provider who always/usually communicated well. Conclusions.—Minority children experienced multiple disparities compared with white children in having a medical home. Study of individual medical home components has the potential to identify specific areas to improve disparities.
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compassionate, and culturally effective.11 A limited number of studies on medical homes have shown potential benefits including improved health outcomes, lower health care costs, and increased patient satisfaction.12–15 Investigators from the Commonwealth Fund demonstrated that having a medical home, and not just primary care, was associated with reduction of disparities for adults.16 Over the past decade, there has been an increasing focus on more comprehensive health care delivery models in order to address disparities and overall health care performance.17–19 Although evidence on disparities has mounted, the medical home concept has evolved as a valuable model for health care delivery to children and families.20 Despite the potential of a medical home to improve the quality of care for children of minority backgrounds, little is known about the extent to which minorities have medical homes as defined by the AAP. Additionally, little has been published contrasting the usefulness of a composite medical home measure as a summary metric versus the individual components as factors amenable to improvement. Therefore, the aims of this study were to examine racial/ethnic disparities among children in having a medical home and to determine whether a composite measure of medical home care provided any different information regarding disparities compared with assessing individual components of a medical home. We hypothesized that racial/ethnic minority children were less likely to have a medical home compared with non-Hispanic white children.
KEY WORDS: pediatrics; health disparities; medical home Academic Pediatrics 2009;9:221–7
acial/ethnic disparities in access to care have been well documented in the US health care system and pose a substantial barrier to quality care.1 A limited number of studies have demonstrated that racial/ethnic minority children experience lower-quality care than non-Hispanic whites even when other important factors such as insurance coverage are considered.1–4 In terms of primary care, multiple studies have specifically examined disparities in having a usual source of care or access to specific services.5–7 A recent analysis of the 2003 National Survey of Children’s Health demonstrated racial/ethnic disparities for numerous measures of access to care, use of services, and health status.2 National initiatives increasingly include recommendations that all children have a medical home.8 Although a medical home has been historically determined by the presence of a usual source of care, more recent definitions expand on this construct.9,10 The American Academy of Pediatrics (AAP) defines a medical home as care that is accessible, continuous, comprehensive, family centered, coordinated, From the Department of Pediatrics, Baylor College of Medicine, Houston, Tex (Dr Raphael and Dr Giardino); Department of Radiation Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, Tex (Dr Guadagnolo); and Commonwealth Fund, New York, NY (Dr Beal). Address correspondence to Jean L. Raphael, MD, MPH, Clinical Care Center, Suite D.1540.00, Texas Children’s Hospital, 6621 Fannin Street, Houston, Texas 77030 (e-mail: [email protected]). Received for publication July 29, 2008; accepted January 30, 2009. ACADEMIC PEDIATRICS Copyright Ó 2009 by Academic Pediatric Association
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METHODS Survey Design and Participants Data for this study were drawn from the 2003 National Survey of Children’s Health (NSCH), a telephone survey sponsored by the Maternal and Child Health Bureau (MCHB).21 The purpose of the NSCH was to assess health indicators in children ages 0 to 17 years of age and to measure their experiences in the health care system. The NSCH used the State and Local Area Integrated Telephone Survey program, an ongoing surveillance initiative available for tracking and monitoring the health and well-being of children and adults. The NSCH used a multistage cluster design based on a random-digit-dialed sample of households with children younger than 18 years of age selected from each of the 50 states and the District of Columbia, allowing computation of reliable state and national estimates. The NSCH was conducted from January 2003 to July 2004, with a total of 102 353 interviews completed. The publicuse data and documentation for the NSCH is available at: http://www.cdc.gov/nchs/about/major/slaits/nsch.htm. Dependent Variables The primary outcome measure was a composite medical home determination reflective of the AAP criteria for a medical home. The definition of medical home and its components as enumerated here was derived from a definition set forth and operationalized for the National Center for Health Statistics by an advisory group consisting of the Child and Adolescent Health Measurement Initiative (CAHMI), MCHB, and its NSCH Technical Expert Panel.22–24 The scoring algorithm developed by the advisory group uses a dichotomous medical home composite measure that classifies children as either having or not having a medical home. The components of the medical home operationalized in the NSCH are shown in Table 1. Of the 7 AAP medical home components, 5 are operationalized in the NSCH. Continuous and accessible care are not assessed given the limitations of a cross-sectional, point-in-time survey in measuring these components via parent report.24 According to the scoring algorithm, access to a medical home must meet the following criteria: 1) the child must have a personal doctor or nurse; and 2) the child must have had at least one preventive medical care visit in the last 12 months; and 3) the child must consistently get needed medical care. This final criterion is intended to encompass family-centered, compassionate, culturally appropriate, comprehensive, and coordinated care. To fulfill the criterion of getting needed care, the respondent must have indicated all of the following: 1) the child’s personal doctor or nurse ‘‘always or usually’’ spends enough time and communicates well; and 2) the child ‘‘always or usually’’ gets needed care and advice from a personal provider; and 3) if applicable, the respondent reported ‘‘no or few problems’’ accessing needed specialist care, services, or equipment; and 4) if applicable, the respondent indicated that a personal doctor or nurse ‘‘always or usually’’ follows up after the child receives specialist care, services, or equipment.
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In addition to the composite medical home, the individual questions related to having a medical home were also used as variables. Two of the questions had dichotomous yes/no responses: having a personal doctor/nurse and having a preventive care visit in the last 12 months. Five of the questions had responses categorized as usually/always versus sometimes/never. These questions addressed the following: whether the provider spent enough time with the patient; whether the provider communicated well; whether the patient received phone care and advice; whether the patient received needed care right away; and whether the provider followed up on specialty care. The last question used as a variable asked whether a patient had any problems gaining access to specialty care, services, or equipment. The responses were categorized as small/no problem versus moderate/big problem. Independent Variables The primary independent variable, race/ethnicity, was determined using the categories defined by the survey.21 Parents were first asked if the child was of Hispanic or Latino origin. Parent were then asked to choose one or more of the following categories to describe child’s race: white, black or African American, American Indian, Alaska Native, Asian, Native Hawaiian, or other Pacific Islander. Parents were allowed to select as many categories as applicable. For the purposes of this study, an algorithm was created to create mutually exclusive and relevant race/ ethnicity categories such that non-Hispanic whites, nonHispanic blacks, Hispanic, and non-Hispanic others were the final groups (hereafter, white, black, Hispanic, and other, respectively). The ‘‘other’’ category consists of American Indian, Alaska Native, Asian, Native Hawaiian, and other Pacific Islander. This composite category was set by the NSCH to protect the confidentiality of individual respondents and children belonging to particularly small groups,21 so access to data regarding specific individual groups within this category were not available for study. Child health status was assessed with the question, ‘‘In general, how would you describe [child]’s health? Would you say [his/her] health is excellent, very good, good, fair, or poor?’’ Special needs status was assessed separately. Children in the survey were screened for special health care needs by using the Child and Adolescent Health Measurement Initiative Children with Special Health Care Needs screener.25 The screener had 5 stem items inquiring about a condition that has lasted or is expected to last $1 year and results in the need for medical and other services, special therapies, or prescription medications, limitations of ability, or emotional, behavioral, or developmental issues requiring counseling. Insurance status in the last 12 months was categorized as insured for entire year, not insured at some point during the year, or uninsured. Age and gender were also recorded. In addition to child characteristics, family characteristics were also measured. Primary language was assessed by the question, ‘‘What is the primary language spoken in your home?’’ We dichotomized primary language as English versus any other language. Nativity, or immigration status,
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Table 1. American Academy of Pediatrics Medical Home Components and Corresponding Survey Questions Medical Home Component
Corresponding Survey Questions
Specific provider
Child has one or more health care providers considered to be personal doctor or nurse
Accessible
(Not assessed in survey)
Family centered
How often does child’s PDN* Spend enough time with child? Explain things in ways that child and parents can understand? (Not assessed in survey)
Continuous Comprehensive
A) Timely access to needed care or phone advice during past 12 months: Needed to call child’s PDN for help or advice? If yes, got needed help from child’s PDN? Needed care right away from child’s PDN? If yes, got needed care right away from child’s PDN? B) Access to needed specialty care and services during past 12 months: Needed specialist doctor care recommended by child’s PDN? If yes, problems getting needed specialist care? Needed special services or equipment not available from PDN? If yes, problems getting needed special health services or equipment? C) Preventive care visit Number of preventive care visits during past 12 months with any health provider
Coordinated
Follow-up after specialty care visits during past 12 months: How often did PDN follow up with parents after child visited a specialist? How often did PDN follow up with parents after child received special health services or equipment?
Compassionate
(Addressed in the Family-Centered Care component questions)
Culturally effective
Availability of language services during past 12 months: Needed an interpreter to help speak with child’s doctors or nurses? If yes, how often able to get someone other than a family member to help speak with child’s doctors or nurses?
*PDN ¼ personal doctor or nurse.
was categorized into 4 groups 1) immigrant parents, immigrant child; 2) immigrant parents, US-born child; 3) one immigrant parent, US-born child; and 4) US-born parents, US-born child. Family structure was categorized as 2 parent (biological or adopted); 2 parents, step; single parent; and any other family structure. Parental education was assessed by the question, ‘‘What is the highest level of education attained by anyone in your household?’’ and categorized as less than high school, high school, or more than high school. Income data relative to the federal poverty level were also recorded. Data Analysis All statistical data analyses were performed by SPSS version 16.0 (Apache Software Foundation) with SPSS Complex Samples, which accounted for the complex survey design of NSCH, including clustering of children within households, stratification of households within states, and unequal sampling weights. The composite measure for having a medical home was calculated from the individual components of a medical home included in the survey, as described above. Differences between proportions were compared by the c2 statistic. Bivariate and multivariable logistic regression analyses were used to examine the associations between sociodemographic variables and having a medical home or its individual components. Odds ratios (OR) and 95% confidence intervals (95% CI) were
calculated for the bivariate logistic regression models. Adjusted odds ratios (AORs) from the multivariable logistic models controlled for independent variables. A 2-sided 0.05 a level was considered as a statistically significant result. For all variables except income, immigration status, and family structure, <1% of the observations were missing. Two percent of observations were missing data on family structure, 9% of respondents were missing income data relative to the federal poverty level, and 27% of observations were missing for immigration status. Given the relatively high percentage of missing income and immigration data and their potential as a confounders in this analysis focused on race, dummy variables for missing poverty level and immigration data were created and entered into the multivariable model to control for any bias that might otherwise be incurred from this missing information. Otherwise, missing values were not included in the analysis for other variables in either the bivariate or multivariable analysis. RESULTS Patient Demographics Sociodemographic characteristics of our sample were analyzed according to race/ethnicity. White children had the highest proportion (69%) of individuals reported as having excellent health compared with black (52%),
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Hispanic (41%), and other (62%) children (P < .0001). Hispanic children had the highest percentage of families with income levels less than 100% of the federal poverty level (35%) and parental education less than high school (29%). Hispanic children had the lowest proportion of individuals with consistent insurance coverage (70%) compared with the other groups, which all had 84% or more with consistent coverage (P < .0001). Hispanic children also had the highest proportion (60%) of individuals living in a home where English was not the primary language. Black children had the lowest percentage (34%) of individuals living in 2-parent households compared with the other groups (61%–71%). General Medical Home Results Table 2 shows the proportion of children by race/ ethnicity meeting each and all of the medical home components. Sixty-three percent (95% CI 63–64) of white children surveyed received care in a medical home, compared with 50% (95% CI 48–53) and 44% (95% CI 42–47) of black and Hispanic children, respectively. Fifty-five percent (95% CI 52–58) of children categorized as other received care in a medical home. The proportions reporting individual components of a medical home were also significantly different with respect to race/ethnicity. Eighty-nine percent (95% CI 89–90) of white children reported having a personal doctor or nurse, while 77% (95% CI 76–79) and 67% (95% CI 66–69) of black and Hispanic children, respectively, reported having a personal doctor or nurse. Eighty-four percent (95% CI 81–86) of children categorized as other reported having a personal doctor or nurse. Racial/ethnic minority children also fared less well in having providers who spent enough time with them; having providers who communicated well; receiving needed phone care/advice; receiving needed care right away; and having access to specialty care, services, and equipment. There was a small difference between races in terms of preventive care visits within the last 12 months, at most 4%. Whites had the lowest proportion of families to report having a provider who usually/always followed up on subspecialty care.
Composite Medical Home Table 3 displays the bivariate and multivariable logistic regression analysis for sociodemographic characteristics and having a medical home. In the bivariate analysis, child characteristics associated with a lower odds of experiencing a medical home included ages 6–17 years of age, minority race/ethnicity, less than excellent health, and not being insured at some point in the last 12 months. Family characteristics associated with a lower odds of having a medical home included non-English primary language at home, lack of parental education, low income, and living in a home other than a 2-parent home. Results of multivariable logistic regression to determine factors associated with having a medical home are also shown in Table 3. Racial/ethnic disparities persisted after adjustment for other variables. Blacks (AOR 0.76, 95% CI 0.69–0.83), Hispanics (AOR 0.80, 95% CI 0.72–0.89), and others (AOR 0.77, 95% CI 0.69–0.87) had lower odds of having a medical home compared with whites. Individual Medical Home Components Logistic regression was also used to assess the relationship between race/ethnicity and the individual components of the medical home score (Table 4). Compared with whites, after adjusting for sociodemographic variables, all racial/ethnic minorities had lower odds of having a personal doctor/nurse, having a provider who always/ usually spent enough time with them, and having a provider who always/usually communicated well. Compared with whites, Hispanics had lower odds of always/usually getting needed phone care/advice (AOR 0.70, 95% CI 0.53–0.94) and always/usually getting needed care right away (AOR 0.69, 95% CI 0.49–0.99). Other children had lower odds of having access to specialty care, services, and equipment (AOR 0.70, 95% CI 0.51–0.96) compared with white children. There were 2 areas where a racial/ethnic minority fared better than whites. Blacks had a higher odds of receiving preventive care in the last 12 months (AOR 1.26, 95% CI 1.14–1.40) and having a provider who always/usually followed up on specialty care (AOR 1.31, 95% CI 1.08–1.60).
Table 2. Medical Home According to Race/Ethnicity* Variable
All
White
Black
Hispanic
Other
Total, n (%) Overall measure, % Medical home Medical home components, % Personal doctor or nurse Preventive care in last 12 months Spends enough time† Doctor/nurse communicates well† Gets needed phone care/advice† Gets needed care right away† Specialty care, services, equipment access‡ Doctor/nurse follow up on specialty care†
84 101
61 024 (65%)
7386 (13%)
9323 (14%)
6368 (7%)
58
63
50
44
55
83 77 81 94 94 92 85 58
89 78 87 96 96 93 87 56
77 79 69 91 92 89 81 62
67 75 66 87 87 87 78 62
84 77 77 92 94 89 77 60
*All variables are significant (P < .0001). †Always/usually. ‡No problem/small problem.
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Health Disparities in Indicators for a Primay Care Medical Home for Children
DISCUSSION The findings from this nationally representative study document that minority children experienced multiple disparities in having a medical home. Previous studies have demonstrated racial/ethnic disparities in access to numerous aspects of pediatric preventive care, including significant differences in screening during primary care visits, parents feeling understood by providers, parental satisfaction, and referrals to specialists.2,6,7 In our study, compared with white children, minority children had a significantly lower odds of having medical homes even after adjusting for sociodemographic factors. These results are consistent with a prior study on comprehensive medical home access for children.26 Building on this Table 3. Bivariate and Multivariable Analyses for Having a Medical Home* Characteristic Child characteristics Age, y 0–5 6–11 12–17 Race/ethnicity White Black Hispanic Other Health status of child Excellent Very good Good Fair Poor Special health care needs No Yes Insurance in past 12 months Insured entire year Not insured at some point Uninsured Family / parent characteristics Primary language at home English Any other language Education, highest in household More than high school High school Less than high school Income level >400% FPL 300–400% FPL 200–300% FPL 100–200% FPL <100% FPL Family structure 2 parents, biological or adopted 2 parents, step Single mother Any other family structure
OR (95% CI)
AOR (95% CI)
Reference 0.52 (0.48–0.57) 0.53 (0.49–0.57)
Reference 0.48 (0.45–0.51) 0.47 (0.44–0.50)
Reference 0.59 (0.54–0.65) 0.46 (0.42–0.51) 0.71 (0.62–0.82)
Reference 0.76 (0.69–0.83) 0.80 (0.72–0.89) 0.77 (0.69–0.87)
Reference 0.75 (0.71–0.80) 0.49 (0.45–0.53) 0.44 (0.37–0.53) 0.26 (0.17–0.42)
Reference 0.85 (0.80–0.90) 0.68 (0.62–0.75) 0.70 (0.57–0.86) 0.38 (0.24–0.61)
Reference 0.99 (0.93–1.05)
Reference 1.21 (1.13–1.30)
Reference 0.59 (0.51–0.67) 0.45 (0.40–0.52)
Reference 0.75 (0.67–0.84) 0.60 (0.54–0.67)
Reference 0.39 (0.35–0.43)
Reference 0.67 (0.56–0.79)
Reference 0.57 (0.53–0.62) 0.35 (0.29–0.41)
Reference 0.78 (0.73–0.83) 0.66 (0.57–0.77)
Reference 0.77 (0.70–0.85) 0.60 (0.55–0.66) 0.45 (0.41–0.49) 0.36 (0.32–0.40)
Reference 0.83 (0.77–0.89) 0.69 (0.64–0.74) 0.61 (0.56–0.66) 0.60 (0.53–0.67)
Reference 0.70 (0.63–0.79) 0.61 (0.57–0.67) 0.54 (0.46–0.63)
Reference 0.91 (0.83–1.00) 0.82 (0.62–1.08) 0.63 (0.47–0.84)
*All variables are significant (P < .01), except special needs in bivariate analysis and except 2-parent stepfamily, single-mother family in multivariate analysis. Variables not significant in both bivariate and multivariable logistic regression are not included in the table: gender, immigration status. AOR ¼ adjusted odds ratio; 95% CI ¼ 95% confidence interval; FPL ¼ federal poverty level; OR ¼ odds ratio.
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previous work, our study sought to identify disparities in specific medical home components. We found that experience with the individual components of a medical home demonstrated more variability by race/ethnicity compared with the composite comparison. All minorities fared less well compared with whites in having a personal provider and having a provider who spent enough time with them and communicated well. Hispanics had more difficulty in getting needed phone care/advice and getting needed care right away. Blacks actually fared better than whites in receiving preventive care and getting adequate follow-up on specialty care. These findings raise 2 critical issues regarding the study of racial/ethnic disparities in primary care. The first question is how to contextualize the influence of racial/ethnicity within the broader framework of socioeconomic factors in access to care. Although our study demonstrated multiple racial/ethnic disparities in access, it also showed independent associations between limited access and factors such as lack of insurance, non-English primary language, poor parental education, and poverty. Many of these factors have been previously established as risk indicators for poor child health outcomes. Additionally, these factors have also been consistently found to be associated with race/ethnicity.27 Given the potential for complex interactions among sociodemographic variables and race/ethnicity and confounding, assessing the role of disparities poses a major analytic challenge. Disparities may be caused by inherent bias within the health care system, underlying socioeconomic differences, or both. The second key question from our findings is how to balance the utility of a composite medical home measure as a summary metric versus the individual indicators as factors amenable to improvement. Although minorities fared less well in receiving overall care consistent with a medical home compared with whites, they had more variable results for individual components of primary care. The individual measures that appeared to drive the composite measure were personal provider, spending enough time with the patient, and communicating well. Previous research has indicated that minority children are less likely than white children to have personal providers.7 Studies have also similarly shown that many disparities in pediatric primary care occur within the physician-patient encounter rather than the general functioning of practices.6,7 The disparities have included time spent, communication, understanding of patient’s needs, and topics discussed during preventive visits. These findings may indicate shortcomings in physician cultural competency or underlying biases. As these studies cumulatively demonstrate, assessment of specific indicators has the potential to facilitate development of targeted interventions to ameliorate disparities. The theoretical impetus for a composite medical home measure has been that a patient’s experience of health care delivery may be best summarized in how individual aspects of care interact. Therefore, although performance on provision of each element of a medical home is important, the overarching all-or-none composite measure may provide a more comprehensive assessment of a patient’s
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Table 4. Bivariate and Multivariable Analyses for Having Individual Medical Home Measures† Characteristic
OR (95% CI)
Personal doctor or nurse White Reference Black 0.40 (0.37–0.44)** Hispanic 0.25 (0.23–0.27)** Other 0.62 (0.53–0.72)** Preventive care in last 12 months White Reference Black 1.10 (1.00–1.21)** Hispanic 0.88 (0.80–0.97)** Other 0.98 (0.85–1.13) Spends enough time‡ White Reference Black 0.34 (0.31–0.37)*** Hispanic 0.30 (0.27–0.32)*** Other 0.52 (0.45–0.60)*** Doctor/nurse communicates well‡ White Reference Black 0.37 (0.32–0.44)*** Hispanic 0.26 (0.49–0.69)*** Other 0.41 (0.31–0.53)*** Gets needed phone care/advice‡ White Reference Black 0.56 (0.43–0.71)** Hispanic 0.32 (0.26–0.40)** Other 0.68 (0.47–0.98)** Gets needed care right away‡ White Reference Black 0.62 (0.49–0.79)** Hispanic 0.48 (0.37–0.62)** Other 0.61 (0.42–0.89)** Specialty care, services, equipment access§ White Reference Black 0.74 (0.57–0.95)* Hispanic 0.50 (0.40–0.62)* Other 0.53 (0.39–0.72)* Doctor/Nurse follow up on specialty care‡ White Reference Black 1.35 (1.12–1.62)** 1.27 (1.06–1.52)** Hispanic Other 1.22 (0.98–1.52)
AOR (95% CI) Reference 0.57 (0.51–0.62)** 0.61 (0.54–0.70)** 0.74 (0.63–0.86)** Reference 1.26 (1.14–1.40)** 1.12 (0.98–1.29) 0.90 (0.78–1.05) Reference 0.44 (0.40–0.49)*** 0.59 (0.52–0.67)*** 0.60 (0.52–0.70)*** Reference 0.52 (0.43–0.62)*** 0.77 (0.63–0.96)*** 0.55 (0.42–0.71)*** Reference 0.80 (0.62–1.02) 0.70 (0.53–0.94)** 0.95 (0.66–1.37) Reference 0.79 (0.61–1.02) 0.69 (0.49–0.99)* 0.70 (0.49–1.00) Reference 0.93 (0.71–1.23) 0.77 (0.56–1.06) 0.70 (0.51–0.96)** Reference 1.31 (1.08–1.60)** 1.20 (0.96–1.50) 1.25 (0.99–1.57)
*P < .05. **P < .01. ***P < .0001. †95% CI ¼ 95% confidence interval; AOR ¼ adjusted odds ratio; OR ¼ odds ratio. ‡Always/usually. §No problem/small problem.
experience within primary care.28 Consequently, achieving the desired outcome of a medical home requires reliable completion of a full set of tasks. All-or-none measurement of performance, such as that used for a medical home in this survey, offers several theoretical advantages including that it most closely reflects the likely desires of patients, fosters a system perspective, and offers a more sensitive scale for assessing improvements.29 Despite the current existence of multiple surveys with assessment of medical home care, the development of robust, policy-relevant measures of the AAP’s medical home definition remains an ongoing challenge for research.24 Historically, obstacles to standardized measurement of a medical home have been identified, including
incomplete empirical evidence regarding the benefits of the AAP medical home components; uncertainty regarding how to measure specific concepts such as continuity and coordination of care; and selecting which concepts most strongly indicate the presence of a medical home. Separately, there are few data demonstrating that medical homes improve care. A recent review of the evidence for medical homes for children with special health care needs showed only moderate improvement in health-related outcomes.15 Study Limitations Our study has several limitations. The composite measure of a medical home, developed by CAHMI and MCHB, differs from the definition of medical home used in other surveys. These differences may affect estimates and therefore conclusions. The NSCH only addresses 5 of the 7 AAP criteria for medical home. Other studies have had similar limitations, given the challenge of measuring continuous and accessible care in a crosssectional survey.24,30 In terms of racial/ethnic categorization, the NSCH did not account for different Hispanic subgroups, although these groups may significantly differ in their health care experiences.5 The heterogeneity of the ‘‘other’’ category was another limitation related to race/ethnicity. The NSCH data are based on parental reports and are therefore subject to recall bias. Finally, because these data are cross-sectional, the temporality of associations cannot be definitively established. Policy Implications The patient-centered medical home has been increasingly promoted as a potentially transformative health care delivery innovation in primary care.31 The relevant issue for health systems and policy makers is whether there is an advantage to a medical home as a unit of care, particularly for reducing health disparities.32–34 Divergent views exist on how a medical home should be measured. The patient experience of a medical home has been operationally defined in multiple national surveys.16,30 In addition to patient experience models, practice-based structural standards for medical home care have also been developed. These practice-based benchmarks are currently being used by the Centers for Medicare and Medicaid Services in demonstration projects to determine whether a medical home model can be used to reform adult primary care practice and reimbursement in Medicare.35 As implementation of the primary medical home model continues to be advanced at a policy level for adults, pediatric policy makers must determine the most rigorous method for measuring a medical home and whether medical homes improve relevant child health outcomes, including racial/ethnic disparities. Conclusions We conclude that minority children experience multiple disparities related to having a medical home and that study of individual components facilitates targeted interventions. However, caution must be exercised in drawing
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conclusions regarding implications for quality of care, given limited evidence demonstrating that medical homes improve health outcomes. Future studies should focus on comparing different approaches to measuring the AAP medical home concept in order to develop the most robust tool for researchers, health advocates, and policy makers. Additionally, future studies should specifically measure health outcomes related to having a medical home and its effect on health disparities. ACKNOWLEDGMENTS
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The authors have no conflicts of interest or financial affiliations to disclose.
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REFERENCES
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1. Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press; 2003. 2. Flores G, Tomany-Korman SC. Racial and ethnic disparities in medical and dental health, access to care, and use of services in US children. Pediatrics. 2008;121:e286–e298. 3. Shi L, Stevens GD. Disparities in access to care and satisfaction among US children: the roles of race/ethnicity and poverty status. Public Health Rep. 2005;120:431–441. 4. Malat J, Oh HJ, Hamilton MA. Poverty experience, race, and child health. Public Health Rep. 2005;120:442–447. 5. Flores G, Fuentes-Afflick E, Barbot O, et al. The health of Latino children: urgent priorities, unanswered questions, and a research agenda. JAMA. 2002;288:82–90. 6. Hambidge SJ, Emsermann CB, Federico S, Steiner JF. Disparities in pediatric preventive care in the United States, 1993–2002. Arch Pediatr Adolesc Med. 2007;161:30–36. 7. Flores G, Olson L, Tomany-Korman SC. Racial and ethnic disparities in early childhood health and health care. Pediatrics. 2005;115: e183–e193. 8. Healthy People 2010: Understanding and Improving Health. 2nd ed. Washington, DC: US Government Printing Office; 2002. 9. Ortega AN, Stewart DC, Dowshen SA, Katz SH. The impact of a pediatric medical home on immunization coverage. Clin Pediatr (Phila). 2000;39:89–96. 10. Center for Medical Home Improvement. Building a medical home: improvement strategies in primary care for children with special health care needs. Available at: http://www.medicalhomeimprovement.org. Accessed February 19, 2009. 11. Medical Home Initiatives for Children with Special Needs Project Advisory Committee. American Academy of Pediatrics. The medical home. Pediatrics. 2002;110:184–186. 12. Starfield B, Shi L. Policy relevant determinants of health: an international perspective. Health Policy. 2002;60:201–218. 13. Starfield B, Shi L. The medical home, access to care, and insurance: a review of evidence. Pediatrics. 2004;113:1493–1498. 14. Federal Interagency Forum on Child and Family Statistics. America’s Children: Key National Indicators of Well-Being 2007. Washington, DC: US Government Printing Office; 2007. 15. Homer CJ, Klatka K, Romm D, et al. A review of the evidence for the medical home for children with special health care needs. Pediatrics. 2008;122:e922–e937. 16. Beal AC, Doty MM, Hernandez SE, et al. Closing the Divide: How Medical Homes Promote Equitable Care: Results from the
23.
24.
25.
26.
27.
28. 29. 30.
31.
32.
33. 34. 35.
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Commonwealth Fund 2006 Health Quality Survey. New York, NY: Commonwealth Fund; 2007. Adams K, Corrigan J. Priority Areas for National Action: Transforming Health Care Quality. Washington, DC: National Academies Press; 2003. McGlynn EA. Introduction and overview of the conceptual framework for a national quality measurement and reporting system. Med Care. 2003;41:I1–I7. Institutes of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001. Palfrey JS, Sofis LA, Davidson EJ, et al. The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. Pediatrics. 2004;113:1507–1516. Blumberg S, Olson L, Srinath K, Giambo P. Design and operation of the national survey of children’s health. Vital Health Stat. 2005;43:1–124. Bethell C, Read D. Evaluation of Medical Home Measurement for Children for the National Survey of Children’s Health. Hyattsville, Md: National Center for Health Statistics; 2003. Bethell C, Read D. Evaluation of Medical Home Measurement in the National Survey of Children’s Health 2003. The Child and Adolescent Health Measurement Initiative Report to the National Center for Health Statistics. Atlanta, Ga: Centers for Disease Control and Prevention; 2003. Bethell C, Read D. Measuring Medical Home: Using Data Elements from the National Survey of Children With Special Health Care Needs or National Survey of Children’s Health. Portland, Ore: Child and Adolescent Health Measurement Initiative; 2008. Bethell CD, Read D, Stein RE, et al. Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambul Pediatr. 2002;2:38–48. Mulvihill BA, Altarac M, Swaminathan S, et al. Does access to a medical home differ according to child and family characteristics, including special-health-care-needs status, among children in Alabama? Pediatrics. 2007;119(Suppl 1):S107–S113. Shone LP, Dick AW, Brach C, et al. The role of race and ethnicity in the State Children’s Health Insurance Program (SCHIP) in four states: are there baseline disparities, and what do they mean for SCHIP? Pediatrics. 2003;112:e521. McAllister JW, Presler E, Cooley WC. Practice-based care coordination: a medical home essential. Pediatrics. 2007;120:e723–e733. Nolan T, Berwick DM. All-or-none measurement raises the bar on performance. JAMA. 2006;295:1168–1170. Bethell CD, Read D, Brockwood K. Using existing population-based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics. 2004;113:1529–1537. Joint principles of a patient-centered medical home released by organizations representing more than 300,000 physicians. Available at: http://www.aafp.org/online/en/home/media/releases/2007/20070305 pressrelease0.html. Accessed February 19, 2009. Berenson RA, Hammons T, Gans DN, et al. A house is not a home: keeping patients at the center of practice redesign. Health Aff. 2008;27:1219–1230. Fisher ES. Building a medical neighborhood for the medical home. N Engl J Med. 2008;359:1202–1205. Iglehart JK. No place like home—testing a new model of care delivery. N Engl J Med. 2008;359:1200–1202. Basu J, Clancy C. Racial disparity, primary care, and specialty referral. Health Serv Res. 2001;36:64–77.
Racial and Ethnic Disparities in Indicators of a Primary Care Medical Home for Children Jean L. Raphael, MD, MPH; B. Ashleigh Guadagnolo, MD, MPH; Anne C. Beal, MD, MPH; Angelo P. Giardino, MD, PhD, MPH Objective.—Racial/ethnic disparities in access to care across a broad range of health services have been well established. In adults, having a medical home has been shown to reduce disparities. The objective of this study was to assess the extent to which children of different race/ethnicities receive primary care consistent with a medical home. Methods.—We conducted a secondary analysis of 84 101 children, ages 0–17, from the 2003–2004 National Survey of Children’s Health, a nationwide household survey. The primary independent variable was race/ethnicity of the child. The main dependent variable was a medical home as defined by the American Academy of Pediatrics. Multiple logistic regression was conducted to investigate associations between race/ethnicity and having a medical home. Results.—The odds of having a medical home were lower for non-Hispanic black (odds ratio [OR] 0.76, 95% confidence
interval [95% CI] 0.69–0.83), Hispanic (OR 0.80, 95% CI 0.72–0.89), and other (OR 0.77, 95% CI 0.69–0.87) children compared with non-Hispanic white children after adjusting for sociodemographic variables. Specific components of a medical home for which minority children had a lower odds (P < .01) of having compared with white children included having a personal provider, a provider who always/usually spent enough time with them, and a provider who always/usually communicated well. Conclusions.—Minority children experienced multiple disparities compared with white children in having a medical home. Study of individual medical home components has the potential to identify specific areas to improve disparities.
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compassionate, and culturally effective.11 A limited number of studies on medical homes have shown potential benefits including improved health outcomes, lower health care costs, and increased patient satisfaction.12–15 Investigators from the Commonwealth Fund demonstrated that having a medical home, and not just primary care, was associated with reduction of disparities for adults.16 Over the past decade, there has been an increasing focus on more comprehensive health care delivery models in order to address disparities and overall health care performance.17–19 Although evidence on disparities has mounted, the medical home concept has evolved as a valuable model for health care delivery to children and families.20 Despite the potential of a medical home to improve the quality of care for children of minority backgrounds, little is known about the extent to which minorities have medical homes as defined by the AAP. Additionally, little has been published contrasting the usefulness of a composite medical home measure as a summary metric versus the individual components as factors amenable to improvement. Therefore, the aims of this study were to examine racial/ethnic disparities among children in having a medical home and to determine whether a composite measure of medical home care provided any different information regarding disparities compared with assessing individual components of a medical home. We hypothesized that racial/ethnic minority children were less likely to have a medical home compared with non-Hispanic white children.
KEY WORDS: pediatrics; health disparities; medical home Academic Pediatrics 2009;9:221–7
acial/ethnic disparities in access to care have been well documented in the US health care system and pose a substantial barrier to quality care.1 A limited number of studies have demonstrated that racial/ethnic minority children experience lower-quality care than non-Hispanic whites even when other important factors such as insurance coverage are considered.1–4 In terms of primary care, multiple studies have specifically examined disparities in having a usual source of care or access to specific services.5–7 A recent analysis of the 2003 National Survey of Children’s Health demonstrated racial/ethnic disparities for numerous measures of access to care, use of services, and health status.2 National initiatives increasingly include recommendations that all children have a medical home.8 Although a medical home has been historically determined by the presence of a usual source of care, more recent definitions expand on this construct.9,10 The American Academy of Pediatrics (AAP) defines a medical home as care that is accessible, continuous, comprehensive, family centered, coordinated, From the Department of Pediatrics, Baylor College of Medicine, Houston, Tex (Dr Raphael and Dr Giardino); Department of Radiation Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, Tex (Dr Guadagnolo); and Commonwealth Fund, New York, NY (Dr Beal). Address correspondence to Jean L. Raphael, MD, MPH, Clinical Care Center, Suite D.1540.00, Texas Children’s Hospital, 6621 Fannin Street, Houston, Texas 77030 (e-mail: [email protected]). Received for publication July 29, 2008; accepted January 30, 2009. ACADEMIC PEDIATRICS Copyright Ó 2009 by Academic Pediatric Association
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METHODS Survey Design and Participants Data for this study were drawn from the 2003 National Survey of Children’s Health (NSCH), a telephone survey sponsored by the Maternal and Child Health Bureau (MCHB).21 The purpose of the NSCH was to assess health indicators in children ages 0 to 17 years of age and to measure their experiences in the health care system. The NSCH used the State and Local Area Integrated Telephone Survey program, an ongoing surveillance initiative available for tracking and monitoring the health and well-being of children and adults. The NSCH used a multistage cluster design based on a random-digit-dialed sample of households with children younger than 18 years of age selected from each of the 50 states and the District of Columbia, allowing computation of reliable state and national estimates. The NSCH was conducted from January 2003 to July 2004, with a total of 102 353 interviews completed. The publicuse data and documentation for the NSCH is available at: http://www.cdc.gov/nchs/about/major/slaits/nsch.htm. Dependent Variables The primary outcome measure was a composite medical home determination reflective of the AAP criteria for a medical home. The definition of medical home and its components as enumerated here was derived from a definition set forth and operationalized for the National Center for Health Statistics by an advisory group consisting of the Child and Adolescent Health Measurement Initiative (CAHMI), MCHB, and its NSCH Technical Expert Panel.22–24 The scoring algorithm developed by the advisory group uses a dichotomous medical home composite measure that classifies children as either having or not having a medical home. The components of the medical home operationalized in the NSCH are shown in Table 1. Of the 7 AAP medical home components, 5 are operationalized in the NSCH. Continuous and accessible care are not assessed given the limitations of a cross-sectional, point-in-time survey in measuring these components via parent report.24 According to the scoring algorithm, access to a medical home must meet the following criteria: 1) the child must have a personal doctor or nurse; and 2) the child must have had at least one preventive medical care visit in the last 12 months; and 3) the child must consistently get needed medical care. This final criterion is intended to encompass family-centered, compassionate, culturally appropriate, comprehensive, and coordinated care. To fulfill the criterion of getting needed care, the respondent must have indicated all of the following: 1) the child’s personal doctor or nurse ‘‘always or usually’’ spends enough time and communicates well; and 2) the child ‘‘always or usually’’ gets needed care and advice from a personal provider; and 3) if applicable, the respondent reported ‘‘no or few problems’’ accessing needed specialist care, services, or equipment; and 4) if applicable, the respondent indicated that a personal doctor or nurse ‘‘always or usually’’ follows up after the child receives specialist care, services, or equipment.
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In addition to the composite medical home, the individual questions related to having a medical home were also used as variables. Two of the questions had dichotomous yes/no responses: having a personal doctor/nurse and having a preventive care visit in the last 12 months. Five of the questions had responses categorized as usually/always versus sometimes/never. These questions addressed the following: whether the provider spent enough time with the patient; whether the provider communicated well; whether the patient received phone care and advice; whether the patient received needed care right away; and whether the provider followed up on specialty care. The last question used as a variable asked whether a patient had any problems gaining access to specialty care, services, or equipment. The responses were categorized as small/no problem versus moderate/big problem. Independent Variables The primary independent variable, race/ethnicity, was determined using the categories defined by the survey.21 Parents were first asked if the child was of Hispanic or Latino origin. Parent were then asked to choose one or more of the following categories to describe child’s race: white, black or African American, American Indian, Alaska Native, Asian, Native Hawaiian, or other Pacific Islander. Parents were allowed to select as many categories as applicable. For the purposes of this study, an algorithm was created to create mutually exclusive and relevant race/ ethnicity categories such that non-Hispanic whites, nonHispanic blacks, Hispanic, and non-Hispanic others were the final groups (hereafter, white, black, Hispanic, and other, respectively). The ‘‘other’’ category consists of American Indian, Alaska Native, Asian, Native Hawaiian, and other Pacific Islander. This composite category was set by the NSCH to protect the confidentiality of individual respondents and children belonging to particularly small groups,21 so access to data regarding specific individual groups within this category were not available for study. Child health status was assessed with the question, ‘‘In general, how would you describe [child]’s health? Would you say [his/her] health is excellent, very good, good, fair, or poor?’’ Special needs status was assessed separately. Children in the survey were screened for special health care needs by using the Child and Adolescent Health Measurement Initiative Children with Special Health Care Needs screener.25 The screener had 5 stem items inquiring about a condition that has lasted or is expected to last $1 year and results in the need for medical and other services, special therapies, or prescription medications, limitations of ability, or emotional, behavioral, or developmental issues requiring counseling. Insurance status in the last 12 months was categorized as insured for entire year, not insured at some point during the year, or uninsured. Age and gender were also recorded. In addition to child characteristics, family characteristics were also measured. Primary language was assessed by the question, ‘‘What is the primary language spoken in your home?’’ We dichotomized primary language as English versus any other language. Nativity, or immigration status,
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Table 1. American Academy of Pediatrics Medical Home Components and Corresponding Survey Questions Medical Home Component
Corresponding Survey Questions
Specific provider
Child has one or more health care providers considered to be personal doctor or nurse
Accessible
(Not assessed in survey)
Family centered
How often does child’s PDN* Spend enough time with child? Explain things in ways that child and parents can understand? (Not assessed in survey)
Continuous Comprehensive
A) Timely access to needed care or phone advice during past 12 months: Needed to call child’s PDN for help or advice? If yes, got needed help from child’s PDN? Needed care right away from child’s PDN? If yes, got needed care right away from child’s PDN? B) Access to needed specialty care and services during past 12 months: Needed specialist doctor care recommended by child’s PDN? If yes, problems getting needed specialist care? Needed special services or equipment not available from PDN? If yes, problems getting needed special health services or equipment? C) Preventive care visit Number of preventive care visits during past 12 months with any health provider
Coordinated
Follow-up after specialty care visits during past 12 months: How often did PDN follow up with parents after child visited a specialist? How often did PDN follow up with parents after child received special health services or equipment?
Compassionate
(Addressed in the Family-Centered Care component questions)
Culturally effective
Availability of language services during past 12 months: Needed an interpreter to help speak with child’s doctors or nurses? If yes, how often able to get someone other than a family member to help speak with child’s doctors or nurses?
*PDN ¼ personal doctor or nurse.
was categorized into 4 groups 1) immigrant parents, immigrant child; 2) immigrant parents, US-born child; 3) one immigrant parent, US-born child; and 4) US-born parents, US-born child. Family structure was categorized as 2 parent (biological or adopted); 2 parents, step; single parent; and any other family structure. Parental education was assessed by the question, ‘‘What is the highest level of education attained by anyone in your household?’’ and categorized as less than high school, high school, or more than high school. Income data relative to the federal poverty level were also recorded. Data Analysis All statistical data analyses were performed by SPSS version 16.0 (Apache Software Foundation) with SPSS Complex Samples, which accounted for the complex survey design of NSCH, including clustering of children within households, stratification of households within states, and unequal sampling weights. The composite measure for having a medical home was calculated from the individual components of a medical home included in the survey, as described above. Differences between proportions were compared by the c2 statistic. Bivariate and multivariable logistic regression analyses were used to examine the associations between sociodemographic variables and having a medical home or its individual components. Odds ratios (OR) and 95% confidence intervals (95% CI) were
calculated for the bivariate logistic regression models. Adjusted odds ratios (AORs) from the multivariable logistic models controlled for independent variables. A 2-sided 0.05 a level was considered as a statistically significant result. For all variables except income, immigration status, and family structure, <1% of the observations were missing. Two percent of observations were missing data on family structure, 9% of respondents were missing income data relative to the federal poverty level, and 27% of observations were missing for immigration status. Given the relatively high percentage of missing income and immigration data and their potential as a confounders in this analysis focused on race, dummy variables for missing poverty level and immigration data were created and entered into the multivariable model to control for any bias that might otherwise be incurred from this missing information. Otherwise, missing values were not included in the analysis for other variables in either the bivariate or multivariable analysis. RESULTS Patient Demographics Sociodemographic characteristics of our sample were analyzed according to race/ethnicity. White children had the highest proportion (69%) of individuals reported as having excellent health compared with black (52%),
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Hispanic (41%), and other (62%) children (P < .0001). Hispanic children had the highest percentage of families with income levels less than 100% of the federal poverty level (35%) and parental education less than high school (29%). Hispanic children had the lowest proportion of individuals with consistent insurance coverage (70%) compared with the other groups, which all had 84% or more with consistent coverage (P < .0001). Hispanic children also had the highest proportion (60%) of individuals living in a home where English was not the primary language. Black children had the lowest percentage (34%) of individuals living in 2-parent households compared with the other groups (61%–71%). General Medical Home Results Table 2 shows the proportion of children by race/ ethnicity meeting each and all of the medical home components. Sixty-three percent (95% CI 63–64) of white children surveyed received care in a medical home, compared with 50% (95% CI 48–53) and 44% (95% CI 42–47) of black and Hispanic children, respectively. Fifty-five percent (95% CI 52–58) of children categorized as other received care in a medical home. The proportions reporting individual components of a medical home were also significantly different with respect to race/ethnicity. Eighty-nine percent (95% CI 89–90) of white children reported having a personal doctor or nurse, while 77% (95% CI 76–79) and 67% (95% CI 66–69) of black and Hispanic children, respectively, reported having a personal doctor or nurse. Eighty-four percent (95% CI 81–86) of children categorized as other reported having a personal doctor or nurse. Racial/ethnic minority children also fared less well in having providers who spent enough time with them; having providers who communicated well; receiving needed phone care/advice; receiving needed care right away; and having access to specialty care, services, and equipment. There was a small difference between races in terms of preventive care visits within the last 12 months, at most 4%. Whites had the lowest proportion of families to report having a provider who usually/always followed up on subspecialty care.
Composite Medical Home Table 3 displays the bivariate and multivariable logistic regression analysis for sociodemographic characteristics and having a medical home. In the bivariate analysis, child characteristics associated with a lower odds of experiencing a medical home included ages 6–17 years of age, minority race/ethnicity, less than excellent health, and not being insured at some point in the last 12 months. Family characteristics associated with a lower odds of having a medical home included non-English primary language at home, lack of parental education, low income, and living in a home other than a 2-parent home. Results of multivariable logistic regression to determine factors associated with having a medical home are also shown in Table 3. Racial/ethnic disparities persisted after adjustment for other variables. Blacks (AOR 0.76, 95% CI 0.69–0.83), Hispanics (AOR 0.80, 95% CI 0.72–0.89), and others (AOR 0.77, 95% CI 0.69–0.87) had lower odds of having a medical home compared with whites. Individual Medical Home Components Logistic regression was also used to assess the relationship between race/ethnicity and the individual components of the medical home score (Table 4). Compared with whites, after adjusting for sociodemographic variables, all racial/ethnic minorities had lower odds of having a personal doctor/nurse, having a provider who always/ usually spent enough time with them, and having a provider who always/usually communicated well. Compared with whites, Hispanics had lower odds of always/usually getting needed phone care/advice (AOR 0.70, 95% CI 0.53–0.94) and always/usually getting needed care right away (AOR 0.69, 95% CI 0.49–0.99). Other children had lower odds of having access to specialty care, services, and equipment (AOR 0.70, 95% CI 0.51–0.96) compared with white children. There were 2 areas where a racial/ethnic minority fared better than whites. Blacks had a higher odds of receiving preventive care in the last 12 months (AOR 1.26, 95% CI 1.14–1.40) and having a provider who always/usually followed up on specialty care (AOR 1.31, 95% CI 1.08–1.60).
Table 2. Medical Home According to Race/Ethnicity* Variable
All
White
Black
Hispanic
Other
Total, n (%) Overall measure, % Medical home Medical home components, % Personal doctor or nurse Preventive care in last 12 months Spends enough time† Doctor/nurse communicates well† Gets needed phone care/advice† Gets needed care right away† Specialty care, services, equipment access‡ Doctor/nurse follow up on specialty care†
84 101
61 024 (65%)
7386 (13%)
9323 (14%)
6368 (7%)
58
63
50
44
55
83 77 81 94 94 92 85 58
89 78 87 96 96 93 87 56
77 79 69 91 92 89 81 62
67 75 66 87 87 87 78 62
84 77 77 92 94 89 77 60
*All variables are significant (P < .0001). †Always/usually. ‡No problem/small problem.
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DISCUSSION The findings from this nationally representative study document that minority children experienced multiple disparities in having a medical home. Previous studies have demonstrated racial/ethnic disparities in access to numerous aspects of pediatric preventive care, including significant differences in screening during primary care visits, parents feeling understood by providers, parental satisfaction, and referrals to specialists.2,6,7 In our study, compared with white children, minority children had a significantly lower odds of having medical homes even after adjusting for sociodemographic factors. These results are consistent with a prior study on comprehensive medical home access for children.26 Building on this Table 3. Bivariate and Multivariable Analyses for Having a Medical Home* Characteristic Child characteristics Age, y 0–5 6–11 12–17 Race/ethnicity White Black Hispanic Other Health status of child Excellent Very good Good Fair Poor Special health care needs No Yes Insurance in past 12 months Insured entire year Not insured at some point Uninsured Family / parent characteristics Primary language at home English Any other language Education, highest in household More than high school High school Less than high school Income level >400% FPL 300–400% FPL 200–300% FPL 100–200% FPL <100% FPL Family structure 2 parents, biological or adopted 2 parents, step Single mother Any other family structure
OR (95% CI)
AOR (95% CI)
Reference 0.52 (0.48–0.57) 0.53 (0.49–0.57)
Reference 0.48 (0.45–0.51) 0.47 (0.44–0.50)
Reference 0.59 (0.54–0.65) 0.46 (0.42–0.51) 0.71 (0.62–0.82)
Reference 0.76 (0.69–0.83) 0.80 (0.72–0.89) 0.77 (0.69–0.87)
Reference 0.75 (0.71–0.80) 0.49 (0.45–0.53) 0.44 (0.37–0.53) 0.26 (0.17–0.42)
Reference 0.85 (0.80–0.90) 0.68 (0.62–0.75) 0.70 (0.57–0.86) 0.38 (0.24–0.61)
Reference 0.99 (0.93–1.05)
Reference 1.21 (1.13–1.30)
Reference 0.59 (0.51–0.67) 0.45 (0.40–0.52)
Reference 0.75 (0.67–0.84) 0.60 (0.54–0.67)
Reference 0.39 (0.35–0.43)
Reference 0.67 (0.56–0.79)
Reference 0.57 (0.53–0.62) 0.35 (0.29–0.41)
Reference 0.78 (0.73–0.83) 0.66 (0.57–0.77)
Reference 0.77 (0.70–0.85) 0.60 (0.55–0.66) 0.45 (0.41–0.49) 0.36 (0.32–0.40)
Reference 0.83 (0.77–0.89) 0.69 (0.64–0.74) 0.61 (0.56–0.66) 0.60 (0.53–0.67)
Reference 0.70 (0.63–0.79) 0.61 (0.57–0.67) 0.54 (0.46–0.63)
Reference 0.91 (0.83–1.00) 0.82 (0.62–1.08) 0.63 (0.47–0.84)
*All variables are significant (P < .01), except special needs in bivariate analysis and except 2-parent stepfamily, single-mother family in multivariate analysis. Variables not significant in both bivariate and multivariable logistic regression are not included in the table: gender, immigration status. AOR ¼ adjusted odds ratio; 95% CI ¼ 95% confidence interval; FPL ¼ federal poverty level; OR ¼ odds ratio.
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previous work, our study sought to identify disparities in specific medical home components. We found that experience with the individual components of a medical home demonstrated more variability by race/ethnicity compared with the composite comparison. All minorities fared less well compared with whites in having a personal provider and having a provider who spent enough time with them and communicated well. Hispanics had more difficulty in getting needed phone care/advice and getting needed care right away. Blacks actually fared better than whites in receiving preventive care and getting adequate follow-up on specialty care. These findings raise 2 critical issues regarding the study of racial/ethnic disparities in primary care. The first question is how to contextualize the influence of racial/ethnicity within the broader framework of socioeconomic factors in access to care. Although our study demonstrated multiple racial/ethnic disparities in access, it also showed independent associations between limited access and factors such as lack of insurance, non-English primary language, poor parental education, and poverty. Many of these factors have been previously established as risk indicators for poor child health outcomes. Additionally, these factors have also been consistently found to be associated with race/ethnicity.27 Given the potential for complex interactions among sociodemographic variables and race/ethnicity and confounding, assessing the role of disparities poses a major analytic challenge. Disparities may be caused by inherent bias within the health care system, underlying socioeconomic differences, or both. The second key question from our findings is how to balance the utility of a composite medical home measure as a summary metric versus the individual indicators as factors amenable to improvement. Although minorities fared less well in receiving overall care consistent with a medical home compared with whites, they had more variable results for individual components of primary care. The individual measures that appeared to drive the composite measure were personal provider, spending enough time with the patient, and communicating well. Previous research has indicated that minority children are less likely than white children to have personal providers.7 Studies have also similarly shown that many disparities in pediatric primary care occur within the physician-patient encounter rather than the general functioning of practices.6,7 The disparities have included time spent, communication, understanding of patient’s needs, and topics discussed during preventive visits. These findings may indicate shortcomings in physician cultural competency or underlying biases. As these studies cumulatively demonstrate, assessment of specific indicators has the potential to facilitate development of targeted interventions to ameliorate disparities. The theoretical impetus for a composite medical home measure has been that a patient’s experience of health care delivery may be best summarized in how individual aspects of care interact. Therefore, although performance on provision of each element of a medical home is important, the overarching all-or-none composite measure may provide a more comprehensive assessment of a patient’s
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Table 4. Bivariate and Multivariable Analyses for Having Individual Medical Home Measures† Characteristic
OR (95% CI)
Personal doctor or nurse White Reference Black 0.40 (0.37–0.44)** Hispanic 0.25 (0.23–0.27)** Other 0.62 (0.53–0.72)** Preventive care in last 12 months White Reference Black 1.10 (1.00–1.21)** Hispanic 0.88 (0.80–0.97)** Other 0.98 (0.85–1.13) Spends enough time‡ White Reference Black 0.34 (0.31–0.37)*** Hispanic 0.30 (0.27–0.32)*** Other 0.52 (0.45–0.60)*** Doctor/nurse communicates well‡ White Reference Black 0.37 (0.32–0.44)*** Hispanic 0.26 (0.49–0.69)*** Other 0.41 (0.31–0.53)*** Gets needed phone care/advice‡ White Reference Black 0.56 (0.43–0.71)** Hispanic 0.32 (0.26–0.40)** Other 0.68 (0.47–0.98)** Gets needed care right away‡ White Reference Black 0.62 (0.49–0.79)** Hispanic 0.48 (0.37–0.62)** Other 0.61 (0.42–0.89)** Specialty care, services, equipment access§ White Reference Black 0.74 (0.57–0.95)* Hispanic 0.50 (0.40–0.62)* Other 0.53 (0.39–0.72)* Doctor/Nurse follow up on specialty care‡ White Reference Black 1.35 (1.12–1.62)** 1.27 (1.06–1.52)** Hispanic Other 1.22 (0.98–1.52)
AOR (95% CI) Reference 0.57 (0.51–0.62)** 0.61 (0.54–0.70)** 0.74 (0.63–0.86)** Reference 1.26 (1.14–1.40)** 1.12 (0.98–1.29) 0.90 (0.78–1.05) Reference 0.44 (0.40–0.49)*** 0.59 (0.52–0.67)*** 0.60 (0.52–0.70)*** Reference 0.52 (0.43–0.62)*** 0.77 (0.63–0.96)*** 0.55 (0.42–0.71)*** Reference 0.80 (0.62–1.02) 0.70 (0.53–0.94)** 0.95 (0.66–1.37) Reference 0.79 (0.61–1.02) 0.69 (0.49–0.99)* 0.70 (0.49–1.00) Reference 0.93 (0.71–1.23) 0.77 (0.56–1.06) 0.70 (0.51–0.96)** Reference 1.31 (1.08–1.60)** 1.20 (0.96–1.50) 1.25 (0.99–1.57)
*P < .05. **P < .01. ***P < .0001. †95% CI ¼ 95% confidence interval; AOR ¼ adjusted odds ratio; OR ¼ odds ratio. ‡Always/usually. §No problem/small problem.
experience within primary care.28 Consequently, achieving the desired outcome of a medical home requires reliable completion of a full set of tasks. All-or-none measurement of performance, such as that used for a medical home in this survey, offers several theoretical advantages including that it most closely reflects the likely desires of patients, fosters a system perspective, and offers a more sensitive scale for assessing improvements.29 Despite the current existence of multiple surveys with assessment of medical home care, the development of robust, policy-relevant measures of the AAP’s medical home definition remains an ongoing challenge for research.24 Historically, obstacles to standardized measurement of a medical home have been identified, including
incomplete empirical evidence regarding the benefits of the AAP medical home components; uncertainty regarding how to measure specific concepts such as continuity and coordination of care; and selecting which concepts most strongly indicate the presence of a medical home. Separately, there are few data demonstrating that medical homes improve care. A recent review of the evidence for medical homes for children with special health care needs showed only moderate improvement in health-related outcomes.15 Study Limitations Our study has several limitations. The composite measure of a medical home, developed by CAHMI and MCHB, differs from the definition of medical home used in other surveys. These differences may affect estimates and therefore conclusions. The NSCH only addresses 5 of the 7 AAP criteria for medical home. Other studies have had similar limitations, given the challenge of measuring continuous and accessible care in a crosssectional survey.24,30 In terms of racial/ethnic categorization, the NSCH did not account for different Hispanic subgroups, although these groups may significantly differ in their health care experiences.5 The heterogeneity of the ‘‘other’’ category was another limitation related to race/ethnicity. The NSCH data are based on parental reports and are therefore subject to recall bias. Finally, because these data are cross-sectional, the temporality of associations cannot be definitively established. Policy Implications The patient-centered medical home has been increasingly promoted as a potentially transformative health care delivery innovation in primary care.31 The relevant issue for health systems and policy makers is whether there is an advantage to a medical home as a unit of care, particularly for reducing health disparities.32–34 Divergent views exist on how a medical home should be measured. The patient experience of a medical home has been operationally defined in multiple national surveys.16,30 In addition to patient experience models, practice-based structural standards for medical home care have also been developed. These practice-based benchmarks are currently being used by the Centers for Medicare and Medicaid Services in demonstration projects to determine whether a medical home model can be used to reform adult primary care practice and reimbursement in Medicare.35 As implementation of the primary medical home model continues to be advanced at a policy level for adults, pediatric policy makers must determine the most rigorous method for measuring a medical home and whether medical homes improve relevant child health outcomes, including racial/ethnic disparities. Conclusions We conclude that minority children experience multiple disparities related to having a medical home and that study of individual components facilitates targeted interventions. However, caution must be exercised in drawing
ACADEMIC PEDIATRICS
Health Disparities in Indicators for a Primay Care Medical Home for Children
conclusions regarding implications for quality of care, given limited evidence demonstrating that medical homes improve health outcomes. Future studies should focus on comparing different approaches to measuring the AAP medical home concept in order to develop the most robust tool for researchers, health advocates, and policy makers. Additionally, future studies should specifically measure health outcomes related to having a medical home and its effect on health disparities. ACKNOWLEDGMENTS
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The authors have no conflicts of interest or financial affiliations to disclose.
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REFERENCES
22.
1. Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press; 2003. 2. Flores G, Tomany-Korman SC. Racial and ethnic disparities in medical and dental health, access to care, and use of services in US children. Pediatrics. 2008;121:e286–e298. 3. Shi L, Stevens GD. Disparities in access to care and satisfaction among US children: the roles of race/ethnicity and poverty status. Public Health Rep. 2005;120:431–441. 4. Malat J, Oh HJ, Hamilton MA. Poverty experience, race, and child health. Public Health Rep. 2005;120:442–447. 5. Flores G, Fuentes-Afflick E, Barbot O, et al. The health of Latino children: urgent priorities, unanswered questions, and a research agenda. JAMA. 2002;288:82–90. 6. Hambidge SJ, Emsermann CB, Federico S, Steiner JF. Disparities in pediatric preventive care in the United States, 1993–2002. Arch Pediatr Adolesc Med. 2007;161:30–36. 7. Flores G, Olson L, Tomany-Korman SC. Racial and ethnic disparities in early childhood health and health care. Pediatrics. 2005;115: e183–e193. 8. Healthy People 2010: Understanding and Improving Health. 2nd ed. Washington, DC: US Government Printing Office; 2002. 9. Ortega AN, Stewart DC, Dowshen SA, Katz SH. The impact of a pediatric medical home on immunization coverage. Clin Pediatr (Phila). 2000;39:89–96. 10. Center for Medical Home Improvement. Building a medical home: improvement strategies in primary care for children with special health care needs. Available at: http://www.medicalhomeimprovement.org. Accessed February 19, 2009. 11. Medical Home Initiatives for Children with Special Needs Project Advisory Committee. American Academy of Pediatrics. The medical home. Pediatrics. 2002;110:184–186. 12. Starfield B, Shi L. Policy relevant determinants of health: an international perspective. Health Policy. 2002;60:201–218. 13. Starfield B, Shi L. The medical home, access to care, and insurance: a review of evidence. Pediatrics. 2004;113:1493–1498. 14. Federal Interagency Forum on Child and Family Statistics. America’s Children: Key National Indicators of Well-Being 2007. Washington, DC: US Government Printing Office; 2007. 15. Homer CJ, Klatka K, Romm D, et al. A review of the evidence for the medical home for children with special health care needs. Pediatrics. 2008;122:e922–e937. 16. Beal AC, Doty MM, Hernandez SE, et al. Closing the Divide: How Medical Homes Promote Equitable Care: Results from the
23.
24.
25.
26.
27.
28. 29. 30.
31.
32.
33. 34. 35.
227
Commonwealth Fund 2006 Health Quality Survey. New York, NY: Commonwealth Fund; 2007. Adams K, Corrigan J. Priority Areas for National Action: Transforming Health Care Quality. Washington, DC: National Academies Press; 2003. McGlynn EA. Introduction and overview of the conceptual framework for a national quality measurement and reporting system. Med Care. 2003;41:I1–I7. Institutes of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001. Palfrey JS, Sofis LA, Davidson EJ, et al. The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. Pediatrics. 2004;113:1507–1516. Blumberg S, Olson L, Srinath K, Giambo P. Design and operation of the national survey of children’s health. Vital Health Stat. 2005;43:1–124. Bethell C, Read D. Evaluation of Medical Home Measurement for Children for the National Survey of Children’s Health. Hyattsville, Md: National Center for Health Statistics; 2003. Bethell C, Read D. Evaluation of Medical Home Measurement in the National Survey of Children’s Health 2003. The Child and Adolescent Health Measurement Initiative Report to the National Center for Health Statistics. Atlanta, Ga: Centers for Disease Control and Prevention; 2003. Bethell C, Read D. Measuring Medical Home: Using Data Elements from the National Survey of Children With Special Health Care Needs or National Survey of Children’s Health. Portland, Ore: Child and Adolescent Health Measurement Initiative; 2008. Bethell CD, Read D, Stein RE, et al. Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambul Pediatr. 2002;2:38–48. Mulvihill BA, Altarac M, Swaminathan S, et al. Does access to a medical home differ according to child and family characteristics, including special-health-care-needs status, among children in Alabama? Pediatrics. 2007;119(Suppl 1):S107–S113. Shone LP, Dick AW, Brach C, et al. The role of race and ethnicity in the State Children’s Health Insurance Program (SCHIP) in four states: are there baseline disparities, and what do they mean for SCHIP? Pediatrics. 2003;112:e521. McAllister JW, Presler E, Cooley WC. Practice-based care coordination: a medical home essential. Pediatrics. 2007;120:e723–e733. Nolan T, Berwick DM. All-or-none measurement raises the bar on performance. JAMA. 2006;295:1168–1170. Bethell CD, Read D, Brockwood K. Using existing population-based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics. 2004;113:1529–1537. Joint principles of a patient-centered medical home released by organizations representing more than 300,000 physicians. Available at: http://www.aafp.org/online/en/home/media/releases/2007/20070305 pressrelease0.html. Accessed February 19, 2009. Berenson RA, Hammons T, Gans DN, et al. A house is not a home: keeping patients at the center of practice redesign. Health Aff. 2008;27:1219–1230. Fisher ES. Building a medical neighborhood for the medical home. N Engl J Med. 2008;359:1202–1205. Iglehart JK. No place like home—testing a new model of care delivery. N Engl J Med. 2008;359:1200–1202. Basu J, Clancy C. Racial disparity, primary care, and specialty referral. Health Serv Res. 2001;36:64–77.