Access to the Medical Home: New Findings From the 2005-2006 National Survey of Children With Special Health Care Needs

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ARTICLE

Access to the Medical Home: New Findings From the

2005-2006 National Survey of Children With Special

Health Care Needs

Bonnie B. Strickland, PhDa, Gopal K. Singh, PhDa, Michael D. Kogan, PhDa, Marie Y. Mann, MD, MPHa, Peter C. van Dyck, MD, MPHa, Paul W. Newacheck, DrPHb,c

aMaternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland;bInstitute for Health Policy Studies andcDepartment of Pediatrics, University of California, San Francisco, California

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

What’s Known on This Subject

CSHCN demand more from the health care system than do other children, and they may be significantly less likely to receive comprehensive health care through the medical home than are children without special health care needs.

What This Study Adds

This article presents new findings from the 2005–2006 NS-CSHCN. Some components of the medical home have been achieved for most CSHCN but are not yet in place for a significant number.

ABSTRACT

OBJECTIVE.This article reports new findings from the 2005–2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) regarding parental percep-tions of the extent to which children with special health care needs (CSHCN) have access to a medical home.

METHODS.Five criteria were analyzed to describe the extent to which CSHCN receive care characteristic of the medical home concept. Data on 40 840 children included in the NS-CSHCN were used to assess the presence of a medical home, as indicated by achieving each of the 5 criteria.

RESULTS.Results of the survey indicate that (1) approximately one half of CSHCN receive care that meets all 5 criteria established for a medical home; (2) access to a medical home is affected significantly by race/ethnicity, income, health insurance status, and severity of the child’s condition; (3) parents of children who do have a medical home report significantly less delayed or forgone care and significantly fewer unmet needs for health care and family support services; and (4) limited improve-ments have occurred since success rates were first measured by using the 2001 NS-CSHCN.

CONCLUSIONS.The findings suggest that, although some components of the medical home concept have been achieved for most CSHCN, care synonymous with the principles underlying the medical home is not yet in place for a significant number

of CSHCN and their families.Pediatrics2009;123:e996–e1004

B

Y DEFINITION, CHILDRENwith special health care needs (CSHCN) require more than routine preventive care and

occasional treatment of acute conditions.1Professional organizations such as the American Academy of

Pedi-atrics and the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration, which is the federal agency with lead responsibility for serving this population, argue that CSHCN need a convenient reliable source for comprehensive care, where families are welcomed and are encouraged to be involved in their

child’s care and where comprehensive services are provided and coordinated.2–4 Over a decade ago, the Health

Resources and Services Administration created a national strategy to increase the number of CSHCN with medical homes and established a monitoring approach that uses national survey data to track progress in achieving that goal,

or core outcome.5Results from the 2001 National Survey of Children with Special Health Care Needs (NS-CSHCN)

demonstrated that, although some components of the medical home core outcome were achieved by most CSHCN, the comprehensive-care model envisioned by the MCHB and the American Academy of Pediatrics was not yet in

place for a significant number of CSHCN.6

In this article, we present updated estimates of the number and proportion of CSHCN with access to a medical home, by using the MCHB measurement approach. This approach specifies key elements of the medical home, as in the analysis of the 2001 NS-CSHCN data, and measures receipt of those elements by using the recently released 2005–2006 NS-CSHCN data. We provide estimates of success in achieving the overall medical home core outcome

www.pediatrics.org/cgi/doi/10.1542/ peds.2008-2504

doi:10.1542/peds.2008-2504

Key Words

community pediatrics, health care delivery/access, health policy, medical home, children with special health care needs

Abbreviations

CSHCN— children with special health care needs

NS-CSHCN—National Survey of Children with Special Health Care Needs MCHB—Maternal and Child Health Bureau OR— odds ratio

Accepted for publication Feb 10, 2009 Address correspondence to Bonnie B. Strickland, Ph.D., Maternal and Child Health Bureau, Parklawn Building 188-A-27, 5600 Fishers Lane, Rockville, MD, 20857. E-mail: bstrickland@hrsa.gov

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and its component elements. We also show how success rates vary according to sociodemographic and health factors and how the presence of a medical home is associated with important health care outcomes such as unmet health needs and missed days from school.

METHODS

Data Description

The NS-CSHCN, which is sponsored by the Health Re-sources and Services Administration and conducted by the Centers for Disease Control and Prevention, is a list-assisted, random-digit-dial, telephone survey admin-istered to a representative sample of households in all of the 50 states and the District of Columbia. The parent or legal guardian who knows the most about the health and health care of the children in the household serves as the respondent for the interview. Follow-up tele-phone calls are made as necessary. The response rate for completion of the special needs interviews in the NS-CSHCN was 61.2%. A total of 40 840 interviews were completed in 2005–2006. In addition, the questionnaire was administered to a separate, national, reference sam-ple of 4650 children without special health care needs. The reference sample was drawn to facilitate compari-sons of the health and health care characteristics of CSHCN and children without special health care needs. The response rate for completion of the interviews in the reference sample was 54.9%. Details of the survey

meth-ods are presented elsewhere.7

Variable Definitions

The MCHB defines CSHCN as having or being at in-creased risk for chronic physical, developmental, behav-ioral, or emotional conditions that require health ser-vices and related serser-vices of a type or amount beyond

that required by children generally.1CSHCN were

de-fined here according to the MCHB definition but with exclusion of children at risk for special health care needs. CSHCN were identified in the NS-CSHCN by using the

CSHCN Screener.8The measurement process for

assess-ing the success rate for achievassess-ing the medical home core outcome involved 3 steps. First, the core outcome was disaggregated into its essential elements or underlying concepts, referred to as components. The medical home core outcome is composed of 5 components, that is, (1) having a usual source of care, (2) having a personal doctor or nurse, (3) receiving all needed referrals for specialty care, (4) receiving help as needed in coordinat-ing health-related care, and (5) receivcoordinat-ing family-cen-tered care.

Second, these components were operationalized by using items contained in the questionnaire for the 2005– 2006 NS-CSHCN. The family-centered care component of the medical home was measured by using 6 question-naire items, that is, (1) whether the family reports that the child’s doctors spend enough time with the child, (2) whether doctors listen carefully to family concerns, (3) whether doctors are sensitive to family values and cus-toms, (4) whether doctors provide needed information, (5) whether doctors make the family feel like a partner

in the child’s care, and (6) whether interpretation ser-vices are available for those who need them. If the respondent answered “usually” or “always” for each item, then the child was considered to have received family-centered care. A similar process was used to op-erationalize each of the remaining components of the medical home objective.

It is important to note that the components did not apply universally to all children in the sample. Specifi-cally, the component on receiving all needed referrals applied only to children who were reported to need

referrals (n⫽13 358, with the exclusion of those with

missing data). Similarly, the component on receiving effective care coordination applied only to children who

were reported to need care coordination (n ⫽30 971,

with the exclusion of those with missing data), and the component on receipt of family-centered care applied

only to children with ⱖ1 doctor visit in the past year

(n⫽ 38 242, with the exclusion of those with missing

data). For successful achievement of the core outcome, all applicable components must have been achieved.

The third step involved creating estimates of the pro-portion of CSHCN who achieved the medical home core outcome. The NS-CSHCN provided national estimates of the proportion of CSHCN whose providers delivered the applicable components of the medical home, individu-ally and collectively. A success rate was calculated by dividing the number of children whose providers deliv-ered all applicable components by the total number of children with valid data. Analyses of the proportion of CSHCN who achieved the core outcome excluded chil-dren with missing data. A total of 38 886 chilchil-dren had valid data for all applicable components of the medical home.

Although the basic constructs used to measure suc-cess in achieving the medical home core outcome did not change between the 2001 NS-CSHCN and the 2005– 2006 NS-CSHCN, changes in questionnaire content and wording, which were made to improve reporting, lim-ited the comparability of survey estimates over time. Changes in the measurement strategy are described in Appendices 1 and 2.

Several sociodemographic and health variables, that is, race and ethnicity, family income (expressed as a proportion of the federal poverty level), primary lan-guage spoken at home, functional impact of the child’s health condition, and insurance status at the time of the interview, were included as covariates in this analysis. Missing income data were imputed by the data collection agency, using multiple imputation methods. The impact of having a medical home was measured with 4 vari-ables. Delayed or forgone care was measured according to whether a child did not receive or was delayed in receiving medical care or other health services during the past 12 months. Unmet health needs occurred when

a child was reported as needingⱖ1 of 15 specific health

services but did not receive that service in the past year. Unmet needs for family services occurred when the

child’s family reported a need forⱖ1 of 3 family services

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defined as days missed from school during the past year because of illness.

Statistical Analyses

By using bivariate analyses, demographic and health characteristics were compared against the components

of the medical home core outcome. The␹2statistic was

used to test the overall association between each covari-ate and the prevalence of the core outcome and its components. The independent effects of the demo-graphic and health variables were ascertained by using logistic regression analyses. Confounding variables, in-cluding race/ethnicity, age, gender, poverty status, lan-guage, insurance status, and impact of condition, were included in the models. SUDAAN software (Research Triangle Institute, Research Triangle Park, NC) was used to conduct all analyses with the weighted survey data,

with SEs adjusted for the complex, multistage sample design.

RESULTS

Overall Success in Achieving the Medical Home

The national overall prevalence of CSHCN in 2005–2006 was 13.9%. Table 1 shows the proportions of CSHCN who achieved the medical home core outcome and each of the 5 core outcome components. Data are presented for the entire population of CSHCN and according to age, gender, race/ethnicity, primary language at home, pov-erty status, insurance status, and degree of adverse im-pact on the child’s activity level. Among CSHCN as a whole, 47.1% had access to a medical home, defined as achieving all 5 components listed above.

Table 1 shows substantial differences in success rates TABLE 1 Prevalence of Access to a Medical Home and Its 5 Components According to Selected Sociodemographic Characteristics

Covariate Unweighted

N

% Prevalence (SE)

Had Medical Home Overall

(N38 886)

Had Usual Source of

Care (N40 551)

Had Personal Doctor/Nurse (N40 658)

Had No Problem Obtaining Referrals When

Needed (N13 358)a

Received Effective Care Coordination When Needed (N30 971)b

Received Family-Centered

Care (N38 242)c

Total population 38 886 47.14 (0.43) 92.92 (0.23) 93.51 (0.22) 78.88 (0.64) 59.15 (0.48) 65.76 (0.42)

Age

0–5 y 7110 50.38 (0.99)d 94.12 (0.52)d 93.41 (0.56) 80.26 (1.43) 63.61 (1.06)d 68.06 (0.95)d

6–11 y 14 449 47.44 (0.70)d 93.30 (0.37)d 93.80 (0.33) 79.22 (1.03) 59.49 (0.77)d 66.37 (0.67)d

12–17 y 17 327 45.24 (0.65)d 91.99 (0.35)d 93.30 (0.32) 77.77 (0.98) 56.66 (0.74)d 64.03 (0.65)d

Gender

Male 23 052 46.67 (0.57) 92.89 (0.30) 92.99 (0.30)d 77.53 (0.89)d 58.70 (0.63) 64.97 (0.55)d

Female 15 765 47.85 (0.67) 93.00 (0.35) 94.27 (0.30)d 80.67 (0.89)d 59.83 (0.75) 66.92 (0.65)d

Race/ethnicity

Hispanic 3753 32.24 (1.39)d 88.13 (0.97)d 89.37 (0.94)d 69.13 (2.39)d 49.94 (1.65)d 47.71 (1.50)d Non-Hispanic white 27 953 52.78 (0.50)d 94.76 (0.22)d 95.29 (0.20)d 80.09 (0.72)d 61.98 (0.55)d 72.26 (0.45)d Non-Hispanic black 3984 36.56 (1.16)d 89.24 (0.76)d 89.48 (0.73)d 80.86 (1.58)d 56.27 (1.39)d 52.56 (1.24)d

Other 3196 43.36 (1.64)d 92.43 (0.81)d 93.19 (0.81)d 78.84 (2.69)d 54.47 (1.86)d 61.94 (1.68)d

Primary language spoken at home

English 37 663 48.32 (0.44)d 93.53 (0.21)d 93.82 (0.21)d 79.48 (0.64)d 59.82 (0.49)d 67.18 (0.42)d Any other language 1201 22.11 (1.99)d 80.74 (2.10)d 87.01 (1.65)d 62.99 (4.28)d 45.39 (2.77)d 33.51 (2.35)d Household poverty status (ratio of

family income to poverty threshold)

⬍100% 5896 34.03 (1.06)d 87.57 (0.68)d 89.07 (0.66)d 75.49 (1.49)d 53.29 (1.20)d 49.85 (1.08)d

100%–200% 8157 41.33 (1.03)d 91.82 (0.57)d 91.64 (0.56)d 75.68 (1.44)d 55.06 (1.13)d 61.21 (1.01)d 200%–400% 13 045 51.00 (0.77)d 94.03 (0.40)d 94.73 (0.35)d 79.78 (1.28)d 61.90 (0.85)d 69.44 (0.72)d ⱖ400% 11 789 56.19 (0.78)d 96.24 (0.28)d 96.67 (0.26)d 83.33 (0.99)d 63.47 (0.85)d 75.37 (0.69)d Insurance coverage at time of survey

Yes 37 485 47.89 (0.44)d 93.56 (0.22)d 94.01 (0.21)d 79.49 (0.64)d 59.86 (0.49)d 66.45 (0.43)d

No 1344 26.50 (1.91)d 74.97 (2.04)d 79.33 (1.92)d 60.86 (4.03)d 37.06 (2.62)d 44.33 (2.32)d

Impact of condition on activity

Never 15 179 60.29 (0.69)d 94.32 (0.31)d 94.41 (0.30)d 84.95 (1.22)d 73.96 (0.77)d 74.55 (0.65)d

Somewhat/moderate 14 931 43.96 (0.69)d 93.00 (0.38)d 93.60 (0.35)d 79.07 (0.97)d 57.81 (0.76)d 63.37 (0.68)d Usually/always/great deal 8698 31.23 (0.87)d 90.69 (0.55)d 91.95 (0.53)d 73.32 (1.19)d 43.35 (0.95)d 55.80 (0.91)d

aThis component applied only to CSHCN who needed a referral to see a doctor or to receive a service during the previous 12 months.

bThis component applied only to CSHCN who used1 type of health care service during the previous 12 months. Specific types of health care services included routine preventive care;

specialty care; preventive dental care; other dental care; prescription medicine; physical, occupational, or speech therapy; mental health care; substance abuse treatment; home health care; eyeglasses or vision care; hearing aids or hearing care; mobility aids; communication aids; medical supplies; durable medical equipment; early intervention services; and special educational services.

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for achieving the medical home among CSHCN sub-populations. Younger children were more likely to achieve the medical home core outcome, whereas no significant differences according to gender were found. There were statistically significant racial and ethnic dis-parities, with white non-Hispanic children demonstrat-ing the highest success rate and Hispanic children havdemonstrat-ing the lowest rates. Black non-Hispanic children fared only slightly better than Hispanic children. Success rates were twofold higher for children in families for which English was the primary language, compared with children in families in which other languages were spoken primar-ily. A substantial gradient with respect to poverty status was noted; children in families with incomes below 100% of the poverty level were only approximately one half as likely to achieve the criteria for having a medical home, compared with children in families with incomes

ⱖ400% of the poverty threshold. Insurance status was

also strongly associated with success in achieving the core outcome; uninsured children were approximately one half as likely as insured children to achieve the core outcome. Finally, children who were least affected by their condition were most likely to have a medical home, whereas those who were most affected were least likely.

Success in Achieving the Components of the Medical Home

Although only approximately one half of CSHCN suc-cessfully achieved all components of the medical home, much greater proportions achieved individual compo-nents. As can be seen in Table 1, 92.9% of CSHCN had a usual source of care and 93.5% had a personal doctor or nurse. An estimated 78.9% of CSHCN had no prob-lems in obtaining referrals when needed. A smaller pro-portion, 59.2%, received effective care coordination when needed. Finally, 65.8% of CSHCN received family-centered care.

Success rates for the individual components also var-ied considerably among subpopulations of CSHCN. In general, the disparities and gradients in rates of success-ful attainment for the 5 components mirrored those described above for the overall core outcome (Table 1). In particular, we found significant racial and ethnic dis-parities for each of the components, with non-Hispanic white children consistently faring better than minority children. We also found a significant income gradient for each of the components, whereby CSHCN from more economically advantaged households had much higher success rates than did their counterparts in lower-in-come households. Insurance coverage was associated with higher rates of success in achieving all 5 medical home components, as was living in a home where En-glish was the primary language. Lastly, CSHCN experi-encing lesser impacts on their activities were signifi-cantly more likely to achieve each of the core outcome components.

Multivariate Findings

Table 2 shows adjusted odds ratios (ORs) for each of the demographic and health variables included in Table 1. The adjusted results remained significant with respect to

race/ethnicity, household language, poverty status, in-surance status, and impact of the condition, all of which were related independently to success in achieving the medical home core outcome.

Impact of Having a Medical Home

Table 3 illustrates the impact of having a medical home on whether the family experienced (1) delayed or

for-gone care, (2) unmet health care needs, (3)⬎10 missed

school days, and (4) unmet needs for family support services. Overall, 8.3% of CSHCN were reported as hav-ing delayed or forgone needed care durhav-ing the past 12 months. A significantly greater proportion of children without a medical home were reported as having for-gone or delayed care (11.7%), compared with children with a medical home (4.1%). The adjusted OR indicated that children without a medical home experienced more than twice the odds of delayed or forgone care, with controlling for confounding.

Unmet health care needs were reported for 16.1% of CSHCN. A significantly greater proportion of children without a medical home were reported as having an unmet health care need (22.5%), compared with chil-dren with a medical home (8.1%). The adjusted OR demonstrated that children without a medical home had more than twice the odds of having unmet health care needs, compared with children with a medical home.

Overall, 14.3% of CSHCN had missed ⬎10 days of

school because of illness in the past 12 months. Having achieved the medical home core outcome was associated with a modest but statistically significant decrease in the

likelihood of missingⱖ10 days of school. This difference

remained significant after adjustment for confounding. Only 4.9% of parents reported unmet needs for fam-ily support services. A much greater proportion of chil-dren without a medical home were reported to have unmet needs in this area (7.7%), compared with chil-dren with a medical home (1.3%). This finding re-mained robust in the multivariate analysis. The adjusted OR showed that children without a medical home

ex-perienced⬎4 times the odds of having unmet needs for

family support, compared with children with a medical home.

Comparison With Reference Children Without Special Health Care Needs

Table 4 shows that children without special health care needs were more likely to have a medical home than were CSHCN (58.1% vs 47.1%). The difference in med-ical home prevalence rates among CSHCN and children without special health care needs was largely attribut-able to more difficulties in obtaining referrals and care coordination among CSHCN.

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unmet health needs. In contrast, the effect size was larger for children without special health care needs in the case of missed school days. Questions regarding re-ceipt of family support services were not asked for chil-dren without special health care needs.

DISCUSSION

The medical home has emerged as the standard of

qual-ity comprehensive health care for all children.2,9–11 To

have a medical home, children must have not only a usual source of care but also care that is family-centered and provides easy access to referrals and care coordina-tion when needed. Consistent with previous studies,

including the 2001 NS-CSHCN,⬎90% of CSHCN in this

study, and their peers without special health care needs, had a usual source of care and a personal doctor or nurse. Given that these elements represent the founda-tion for a medical home and that multiple studies have demonstrated the positive impact of these

characteris-tics,12–14CSHCN fare well in this regard. However, only

approximately one half of CSHCN, and a somewhat larger proportion of children without special health care needs in the reference sample, had access to all aspects of a medical home. Qualitative aspects of the medical home model, including easy access to needed referrals or care coordination and family-centered care, remain problem-atic for many CSHCN.

Predictably, this study found significant disparities related to poverty, race, and ethnicity with respect to who has a medical home. The proportion of CSHCN without a medical home decreased strikingly as family income increased. This was true overall and for all com-ponents of the medical home. Disparities in access to and quality of health care in the United States is a major

concern and the focus of multiple national initiatives.13,15

Studies indicated that the medical home has the poten-tial to reduce disparities in health care significantly, and the model is now considered the standard of quality TABLE 2 Adjusted Odds of Not Having Access to a Medical Home and Each of Its 5 Components, According to Selected

Socioedemographic Characteristics

OR (95% CI)

Did Not Have Access to Medical Home

Did Not Have Usual Source of

Care

Did Not Have Personal Doctor/Nurse

Had Problems Obtaining Referrals When

Neededa

Did Not Receive Effective Care Cooordintionb

Did Not Receive Family-Centered Carec

Age

0–5 y 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 6–11 y 1.12 (1.01–1.23) 1.21 (0.97–1.51) 0.94 (0.76–1.16) 1.04 (0.84–1.30) 1.15 (1.03–1.30) 1.11 (0.99–1.23) 12–17 y 1.27 (1.15–1.40) 1.53 (1.24–1.89) 1.08 (0.88–1.32) 1.19 (0.97–1.47) 1.34 (1.19–1.50) 1.31 (1.18–1.46) Gender

Male 1.02 (0.95–1.09) 1.00 (0.87–1.15) 1.24 (1.07–1.43) 1.21 (1.04–1.41) 1.01 (0.92–1.09) 1.09 (1.00–1.17) Female 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) Race/ethnicity

Hispanic 1.64 (1.41–1.92) 1.35 (1.02–1.78) 1.70 (1.32–2.19) 1.45 (1.11–1.90) 1.33 (1.12–1.58) 1.89 (1.63–2.20) Non-Hispanic white 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) Non-Hispanic black 1.60 (1.43–1.80) 1.73 (1.43–2.10) 1.85 (1.54–2.22) 0.84 (0.67–1.05) 1.14 (1.00–1.30) 1.90 (1.69–2.13) Other 1.35 (1.16–1.57) 1.30 (1.01–1.68) 1.32 (1.01–1.72) 1.05 (0.74–1.50) 1.35 (1.15–1.58) 1.45 (1.23–1.70) Primary language spoken at home

English 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) Any other language 2.05 (1.57–2.67) 2.13 (1.42–3.21) 1.17 (0.81–1.68) 1.56 (1.02–2.39) 1.34 (1.01–1.78) 2.31 (1.80–2.97) Household poverty status (ratio of family

income to poverty threshold)

⬍100% 1.57 (1.40–1.77) 2.41 (1.93–3.02) 2.50 (1.99–3.13) 1.36 (1.08–1.71) 1.04 (0.91–1.18) 2.00 (1.78–2.26) 100%–200% 1.33 (1.20–1.49) 1.69 (1.34–2.13) 2.08 (1.68–2.58) 1.38 (1.11–1.70) 1.06 (0.94–1.20) 1.44 (1.27–1.62) 200%–400% 1.12 (1.02–1.22) 1.49 (1.21–1.83) 1.49 (1.20–1.84) 1.20 (0.97–1.49) 0.96 (0.86–1.06) 1.23 (1.11–1.36) ⱖ400% 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) Insurance coverage at time of survey

Yes 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) No 1.96 (1.60–2.40) 3.61 (2.86–4.55) 3.16 (2.45–4.07) 1.96 (1.39–2.75) 2.16 (1.69–2.76) 1.89 (1.55–2.32) Impact of condition on activity

Never 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference) Somewhat/moderate 1.78 (1.64–1.93) 1.02 (0.86–1.21) 0.95 (0.80–1.12) 1.45 (1.16–1.80) 2.00 (1.81–2.21) 1.51 (1.38–1.66) Usually/always/great deal 2.91 (2.63–3.22) 1.28 (1.06–1.53) 1.09 (0.90–1.31) 1.89 (1.51–2.37) 3.54 (3.16–3.95) 1.90 (1.71–2.11)

CI indicates confidence interval.

aThis component applied only to CSHCN who needed a referral to see a doctor or to receive a service during the previous 12 months.

bThis component applied only to CSHCN who used1 type of health care service during the previous 12 months. Specific types of health care services included routine preventive care;

specialty care; preventive dental care; other dental care; prescription medicine; physical, occupational, or speech therapy; mental health care; substance abuse treatment; home health care; eyeglasses or vision care; hearing aids or hearing care; mobility aids; communication aids; medical supplies; durable medical equipment; early intervention services; and special educational services.

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comprehensive health care by multiple health care en-tities.2,9–11,13

Although CSHCN with significant functional limita-tions are more likely than others to need the compre-hensive benefits of the medical home, they were almost 3 times less likely than other CSHCN to have care con-sistent with the characteristics of a medical home. This finding may reflect a pediatric primary care system that is generally well-tuned to provide acute and well-child care for children rather than comprehensive coordinated care, including chronic care for children requiring

fre-quent, complex, multisystem care.16,17It also may reflect

the current critical shortage of pediatric subspecialists that is evidenced by long waiting lists for referrals and

access to subspecialty services.18Increasing the capacity

of the pediatric health care system to provide the con-tinuum of care required to meet the unique needs of all children is a central theme in current national quality improvement initiatives, including redesign of practice

and financing strategies to achieve these goals.10,19

Although the basic components of the medical home

addressed in this study are consistent with those mea-sured in the 2001 NS-CSHCN, the measurement strategy was modified for most components (Appendices 1 and 2), which limits our ability to compare progress over the past 5 years regarding the aspects of the medical home related to care coordination and access to needed refer-rals. The measurement strategy for family-centered care remained consistent. Although the extent to which CSHCN had access to all elements of family-centered care did not change between the 2001 NS-CSHCN and the current study, modest improvements occurred for 4 of the 5 individual elements of family-centered care that were measured comparably over time. These improve-ments may reflect the growing recognition of and value

attributed to family/patient-centered care.10,11,15 There

was a reduction in 1 element, that is, the proportion of families indicating that their child’s doctors spent suffi-cient time with them.

The findings of this study reiterate the findings of the 2001 NS-CSHCN that CSHCN without a medical home are more likely to have delayed or forgone care, unmet TABLE 3 Impact of a Medical Home on Unmet Health Care and Family Support Service Needs and School Absences Among US CSHCN and

Children Without Special Health Care Needs (N38 886)

Covariate Delayed/Forgone

Care

Unmet Health Care Need

>11 School Days Missed Because

of Illness

Unmet Need for Family Support

Servicesa

CSHCN (N⫽38 886) Observed prevalence

Total population, % (SE) 8.31 (0.24) 16.07 (0.32) 14.33 (0.33) 4.87 (0.19)

Had medical home, % (SE)

Yes 4.12 (0.27) 8.06 (0.37) 11.46 (0.46) 1.29 (0.14)

No 11.65 (0.40) 22.53 (0.51) 16.63 (0.49) 7.65 (0.33)

Adjusted OR (95% CI)

Had medical home 1.00 (reference) 1.00 (reference) 1.00 (reference) 1.00 (reference)

Did not have medical home 2.30 (1.96–2.70) 2.45 (2.17–2.76) 1.14 (1.01–1.29) 4.31 (3.38–5.50)

Children without special health care needs (N⫽4650) Observed prevalence

Total population, % (SE) 4.97 (0.41) 5.41 (0.42) 2.39 (0.32)

Had medical home, % (SE)

Yes 3.08 (0.45) 3.71 (0.37) 1.78 (0.37)

No 7.59 (0.75) 7.77 (0.74) 3.17 (0.56)

Adjusted OR (95% CI)

Had medical home 1.00 (reference) 1.00 (reference) 1.00 (reference)

Did not have medical home 1.90 (1.30–2.76) 1.79 (1.23–2.59) 1.81 (0.99–3.29)

CI indicates confidence interval. ORs were adjusted for age, gender, race/ethnicity, language spoken at home, household poverty status, insurance coverage at time of survey, and impact of condition on activity (for CSHCN only).

aThis outcome applied only to CSHCN.

TABLE 4 Comparison of Prevalence of Access to a Medical Home for CSHCN and Children Without Special Health Care Needs

Medical Home and Its Components With Special Needs Without Special Needs Difference in Prevalence,

% % (SE) Population

Estimate,n

% (SE) Population Estimate,n

Overall access to medical home 47.14 (0.43) 4 588 731 58.14 (0.91) 33 334 157 ⫺18.92a

Child had usual source of care 92.92 (0.23) 9 457 011 87.26 (0.62) 52 806 612 6.49a

Child had personal doctor/nurse 93.51 (0.22) 9 540 991 89.07 (0.57) 54 177 961 4.98a

No problem obtaining needed referrals 78.88 (0.64) 2 640 388 88.73 (1.45) 6 063 865 ⫺11.10a

Received needed effective care coordination 59.15 (0.48) 4 592 731 76.30 (1.24) 16 710 875 ⫺22.48a

Received family-centered care 65.76 (0.42) 6 267 063 68.59 (0.94) 33 006 013 ⫺4.13a

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health care needs, and unmet needs for family support services. These results add to the growing body of evi-dence supporting the medical home as a model of com-prehensive health care for all children, especially CSHCN.

There are limitations to this study. First, the fact that the NS-CSHCN is based on parental report is considered both a limitation and a strength of the study. Although the estimates provided are limited by the knowledge and recollection of the parent, these data represent a con-sumer-driven national measurement of the medical home concept. Second, some CSHCN are underrepre-sented or not repreunderrepre-sented in the survey, including those in institutional settings, those who are homeless, those in migrant families, and those without landline tele-phones. Adjustments in the sample weights were made to account for these differences. Third, results for the reference sample are included to provide a broad com-parison of the medical home concept for CSHCN and children without special health care needs. However, this comparison is limited because the data were derived from 2 different samples and the response rate for the reference sample was relatively low.

CONCLUSIONS

Overall, the 2005–2006 NS-CSHCN indicates that we have not yet achieved the National Healthy People 2010 objective to ensure that all CSHCN have access to com-prehensive health care consistent with the standard of a medical home. Although most CSHCN have a usual source of care, some do not, and approximately one half do not have access to the type of comprehensive health care necessary to promote optimal child outcomes. These findings reinforce the need to continue and to expand federal, state, and community efforts to elimi-nate disparities in access to care and to implement strat-egies to ensure that all children have access to a medical home. Although this goal has not yet been met, efforts to ensure that all children have a medical home continue. As the medical home model moves from a concept to an implemented quality health care strategy, longitudinal research is needed to demonstrate the important child health outcomes attributable to this model. Improved strategies for reaching all children must be developed and implemented effectively at the federal, state, and community levels.

REFERENCES

1. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs.Pediatrics.1998;102(1): 137–140

2. American Academy of Pediatrics, Medical Home Initiatives for Children with Special Needs Project Advisory Committee. Pol-icy statement: the medical home. Pediatrics. 2002;110(1): 184 –186

3. US Department of Health and Human Services.Healthy People

2010.Conf. ed. Washington, DC: US Department of Health and

Human Services; 2000

4. US Department of Health and Human Services.Delivering on the Promise: Self-Evaluation to Promote Community Living for People With Disabilities: Report to the President on Executive Order 13217. Washington, DC: US Department of Health and Human Services; 2002. Accessed May 1, 2008

5. Health Resources and Services Administration.National Agenda for Children With Special Health Care Needs: Achieving the Goals 2000. Washington, DC: Health Resources and Services Administration; 1997

6. Strickland B, McPherson M, Weissman G, van Dyck P, Huang ZJ, Newacheck P. Access to the medical home: results of the National Survey of Children with Special Health Care Needs.

Pediatrics.2004;113(5 suppl):1485–1492

7. Blumberg SJ, Welch EM, Chowdhury SR, Upchurch HL, Parker EK, Skalland BJ. Design and operation of the National Survey of Children with Special Health Care Needs, 2005– 06. National Center for Health StatisticsVital Health Stat 1. 2008;(45):1–188 8. Bethell CD, Read D, Stein RE, Blumberg SJ, Wells N, Newa-check PW. Identifying children with special health care needs: development and evaluation of a short screening instrument.

Ambul Pediatr.2002;2:38 – 48

9. Hagan JF, Shaw JS, Duncan PM, eds.Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents. 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2008 10. National Committee for Quality Assurance. Physician Practice

Connections: Patient-centered Medical Home: Standards and Guide-lines. Washington, DC: National Committee for Quality Assurance; 2008

11. American Academy of Family Physicians; American Academy of Pediatrics; American College of Physicians; American Osteo-pathic Association.Joint Principles of the Patient-Centered Medical Home, March 2007. Available at: www.medicalhomeinfo.org/ Joint%20Statement.pdf. Accessed May 1, 2008

12. Starfield B, Shi L. The medical home, access to care, and insurance: a review of evidence.Pediatrics.2004;113(5 suppl): 1493–1498

13. Beal AC, Doty MM, Hernandez SE, Shea KK, Davis K.Closing the Divide: How Medical Homes Promote Equity in Health Care: Results from the Commonwealth Fund 2006 Health Care Quality Survey. New York, NY: Commonwealth Fund; 2007

14. Palfrey JS, Sofis LA, Davidson EJ, et al. The Pediatric Alliance for Coordinated Care: evaluation of a medical home model.

Pediatrics.2004;113(5 suppl):1507–1516

15. Institute of Medicine.Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001

16. Houtrow AJ, Kim SE, Chen AY, Newacheck PW. Preventive health care for children with and without special health care needs.Pediatrics. 2007;119:(4):e821– e828

17. Mangione-Smith R, DeCristofaro AH, Setodji CM, et al. The quality of ambulatory care delivered to children in the United States.N Engl J Med.2007;357(15):1515–1523

18. Jewett EA, Anderson MR, Gilchrist GS. The pediatric subspe-cialty workforce: public policy and forces for change.Pediatrics. 2005;116(5):1192–1202

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APPENDIX 1 Differences in Measurement of the Medical Home Core Outcome in 2001 and 2005–2006

Components Key Differences

Child has usual source of care For 2005–2006, assessment of usual source for preventive care was modified (see below). Child has usual source for sick care No change.

Child has usual source for preventive care For 2005–2006, a new question was added to ask specifically whether such a place existed; if child had no such place, then respondent needed to volunteer this information in 2001.

Child has personal doctor or nurse In 2001, respondent might have reported no if child had⬎1 personal doctor or nurse; for 2005–2006, the question was modified to permit reporting of⬎1 personal doctor or nurse.

Child has no problems obtaining referrals when needed In 2001, the survey asked only about problems getting referrals to specialists; for 2005–2006, the question was modified to refer to referrals for any doctors or any services, and a new question was added to determine whether referrals were necessary.

Child receives effective care coordination For 2005–2006, this section of the survey was modified extensively (see below). Family is very satisfied with doctors’ communication

with each other

In 2001, respondents were asked to judge the quality of doctors’ communication; for 2005–2006, the question was modified to ask about satisfaction with communication.

Family is very satisfied with doctors’ communication with other programs

In 2001, respondents were asked to judge the quality of doctors’ communication with other programs; for 2005–2006, the question was modified to ask about satisfaction with

communication, and a new question was added to determine whether such communication was needed.

Family usually or always gets sufficient help coordinating care, if needed

Professional care coordination questions from 2001 were dropped; new questions were added for 2005–2006 to determine whether respondent received help from anyone and whether respondent thought that any extra help in arranging or coordinating care would have been useful.

Child receives family-centered care For 2005–2006, availability of interpreters was added as a component of family-centered care (see below).

Doctors usually or always spend enough time No change. Doctors usually or always listen carefully No change. Doctors usually or always are sensitive to values and

customs

No change.

Doctors usually or always provide needed information

No change.

Doctors usually or always make family feel like partner

No change.

Interpreter usually or always is available when needed

New question for 2005–2006.

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APPENDIX 2 Success Rates for Meeting the Medical Home Core Outcome in 2001 and 2005–2006

2005–2006 2001, Success Rate, EstimateSE, % Valid

N

Not Ascertained,

n

Success Rate, Estimate

SE, %

Child has usual source of care 40 551 172 92.9⫾0.23 NA

Child has usual source for sick care 40 614 109 94.3⫾0.21a 90.60.26a

Child has usual source for preventive care 40 626 97 97.1⫾0.16 NA

Child has personal doctor or nurse 40 658 65 93.5⫾0.22 NA

Child has no problems obtaining referrals when neededb 13 358 264 78.90.64 NA

Child receives effective care coordinationc 30 971 890 59.20.48 NA

Family is very satisfied with doctors’ communication with each otherc,d 26 706 274 63.80.51 NA Family is very satisfied with doctors’ communication with other programsc 11 077 462 52.10.82 NA Family usually or always gets sufficient help coordinating care, if neededc 17 803 301 67.40.60 NA

Child receives family-centered caree 38 242 673 65.80.42 66.80.48

Doctors usually or always spend enough timee 38 765 150 78.70.37a 83.60.38a

Doctors usually or always listen carefullye 38 809 106 88.80.28 88.10.34

Doctors usually or always are sensitive to values and customse 38 555 360 88.90.28a 86.90.35a

Doctors usually or always provide needed informatione 38 773 142 83.10.32a 81.00.41a

Doctors usually or always make family feel like partnere 38 825 90 87.70.29a 85.90.37a

Interpreter usually or always is available when needede,f 420 1 56.34.35 NA

CSHCN meeting all applicable components for medical home 38 886 1837 47.1⫾0.43 NA

Adapted from Centers for Disease Control and Prevention report. NA indicates not applicable. Component was not measurable in 2001, or measurement of the outcome/component differed substantially between 2001 and 20052006. ValidNindicates the unweighted sample size with nonmissing data. Not ascertained includes children for whom a response was refused or was not known by the respondent.

aStatistically significant differences in prevalence between the 2 surveys (P.05).

bThis component was ascertained only for CSHCN who needed a referral to see a doctor or to receive a service during the previous 12 months.

cThis component was ascertained for CSHCN who used1 type of health care service during the previous 12 months. Specific types of health care services included routine preventive

care; specialty care; preventive dental care; other dental care; prescription medicine; physical, occupational, or speech therapy; mental health care; substance abuse treatment; home health care; eyeglasses or vision care; hearing aids or hearing care; mobility aids; communication aids; medical supplies; durable medical equipment; early intervention services; and special educational services.

dCommunication with other health care professionals is reported only for CSHCN who used specialty care; physical, occupational, or speech therapy; mental health care; substance abuse

treatment; and/or home health care during the previous 12 months.

eThis component was ascertained only for CSHCN with1 doctor visit during the previous 12 months.

fAvailability of interpreters was ascertained only for CSHCN who lived in homes where the primary language spoken was not English and who needed an interpreter during the previous

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DOI: 10.1542/peds.2008-2504

2009;123;e996

Pediatrics

van Dyck and Paul W. Newacheck

Bonnie B. Strickland, Gopal K. Singh, Michael D. Kogan, Marie Y. Mann, Peter C.

of Children With Special Health Care Needs

Access to the Medical Home: New Findings From the 2005-2006 National Survey

Services

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DOI: 10.1542/peds.2008-2504

2009;123;e996

Pediatrics

van Dyck and Paul W. Newacheck

Bonnie B. Strickland, Gopal K. Singh, Michael D. Kogan, Marie Y. Mann, Peter C.

of Children With Special Health Care Needs

Access to the Medical Home: New Findings From the 2005-2006 National Survey

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Figure

TABLE 1Prevalence of Access to a Medical Home and Its 5 Components According to Selected Sociodemographic Characteristics
TABLE 1Prevalence of Access to a Medical Home and Its 5 Components According to Selected Sociodemographic Characteristics. View in document p.3
TABLE 2Adjusted Odds of Not Having Access to a Medical Home and Each of Its 5 Components, According to SelectedSocioedemographic Characteristics
TABLE 2Adjusted Odds of Not Having Access to a Medical Home and Each of Its 5 Components According to SelectedSocioedemographic Characteristics. View in document p.5
TABLE 4Comparison of Prevalence of Access to a Medical Home for CSHCN and Children Without Special Health Care Needs
TABLE 4Comparison of Prevalence of Access to a Medical Home for CSHCN and Children Without Special Health Care Needs. View in document p.6
TABLE 3Impact of a Medical Home on Unmet Health Care and Family Support Service Needs and School Absences Among US CSHCN andChildren Without Special Health Care Needs (N � 38 886)
TABLE 3Impact of a Medical Home on Unmet Health Care and Family Support Service Needs and School Absences Among US CSHCN andChildren Without Special Health Care Needs N 38 886 . View in document p.6