Published online October 1, 2008
PEDIATRICS Vol. 122 No. 4 October 2008, pp. e922-e937 (doi:10.1542/peds.2007-3762)
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REVIEW ARTICLE

A Review of the Evidence for the Medical Home for Children With Special Health Care Needs

Charles J. Homer, MD, MPHa,b, Kirsten Klatka, MSWc, Diane Romm, PhDc, Karen Kuhlthau, PhDc,d, Sheila Bloom, MSc, Paul Newacheck, DrPHe, Jeanne Van Cleave, MDd,e and James M. Perrin, MDd,e

a National Initiative for Children's Healthcare Quality, Cambridge, Massachusetts
b Harvard School of Public Health, Boston, Massachusetts
c Center for Child and Adolescent Health Policy, Mass General Hospital for Children, Boston, Massachusetts
d Harvard Medical School, Boston, Massachusetts
e Institute for Health Policy Studies and Department of Pediatrics, University of California, San Francisco, California


   ABSTRACT
TOP
 ABSTRACT
ORGANIZATION OF THE REVIEW
 RESULTS
 DISCUSSION
 REFERENCES
 
CONTEXT. The receipt of health care in a medical home is increasingly touted as a fundamental basis for improved care for persons with chronic conditions, yet the evidence for this claim has not been systematically assessed.

OBJECTIVE. Our goal was to determine the evidence for the federal Maternal and Child Health Bureau recommendation that children with special health care needs receive ongoing comprehensive care within a medical home.

METHODS. We searched the nursing and medical literature, references of selected articles, and requested expert recommendations. Search terms included children with special health care needs, medical home-related interventions, and health-related outcomes. Articles that met defined criteria (eg, children with special health care needs, United States–based, quantitative) were selected. We extracted data, including design, population characteristics, sample size, intervention, and findings from each article.

RESULTS. We selected 33 articles that reported on 30 distinct studies, 10 of which were comparison-group studies. None of the studies examined the medical home in its entirety. Although tempered by weak designs, inconsistent definitions and extent of medical home attributes, and inconsistent outcome measures, the preponderance of evidence supported a positive relationship between the medical home and desired outcomes, such as better health status, timeliness of care, family centeredness, and improved family functioning.

CONCLUSIONS. The evidence provides moderate support for the hypothesis that medical homes provide improved health-related outcomes for children with special health care needs. Additional studies with comparison groups encompassing all or most of the attributes of the medical home need to be undertaken.

Key Words: medical home • special needs children • systematic review • family-centered care

Abbreviations: MCHB—Maternal Child Health Bureau • CSHCN—children with special health care needs • MH—medical home • FCC—family-centered care • CINAHL—Cumulative Index to Nursing and Allied Health Literature • RCT—randomized, controlled trial • NSCSHCN—National Survey of Children With Special Healthcare Needs • BTS—Breakthrough Series Collaborative • PCP—primary care provider • ED—emergency department • PACC—Pediatric Alliance for Coordinated Care • HMO—health maintenance organization • USC—usual source of care

The Maternal and Child Health Bureau (MCHB) defines children with special health care needs (CSHCN) as those "who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally." More than 12 million US children meet this definition.1

Research over 3 decades demonstrates that CSHCN and their families have substantial unmet health care needs, and that these needs are more similar than different across different health conditions.2–8 These data and the experience of families led to the formulation of a model of family-centered, community-based care for CSHCN termed "the medical home" (MH).9–11 The attributes of care provided through an ideal MH are "accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective."12

The MCHB developed an integrated set of 6 core objectives for CSHCN that form the basis for measuring the performance of state Title V programs and are reflected in the nation's Healthy People 2010 goals. These objectives specify that:

This article focuses on the MH objective and examines the existing evidence on the impact of the MH on health and other related outcomes for CSHCN. Our research questions were as follows: Does having an MH change important outcomes? To what extent does undertaking more activities to achieve more of the attributes of the MH influence these outcomes for CSHCN? We hypothesized that having an MH would be associated with improved short- and long-term outcomes, and that programs undertaking more activities would have better outcomes than programs undertaking fewer.


   ORGANIZATION OF THE REVIEW
TOP
 ABSTRACT
 ORGANIZATION OF THE REVIEW
RESULTS
 DISCUSSION
 REFERENCES
 
A logic model (ie, a diagram that illustrates how resources relate to program activities and how these activities relate to expected outcomes) framed the search strategy and analysis of the review (Fig 1). The activities of the logic model were based on those specific actions required to create an MH with the desired attributes (eg, care coordination as an activity to produce coordinated care; care planning to produce family-centered care [FCC]). We considered short-term "outcomes" as the characteristics of the processes of care delivered to or received by the family. We used the Institute of Medicine's aims for the health care system,13 a standard framework for assessing quality of care. These outcomes included: safety (of the patient when interacting with the health care system); effectiveness (provision of evidence-based care); efficiency (best use of resources); FCC (family-provider partnership, experience of care); timeliness (minimizing delays to receiving care); and equity (benefits of the health system for all people). We chose these dimensions of care because they are increasingly accepted as cross-cutting aims of a high-quality health system and provide the framework for national reports on quality of care.14–16 We considered longer term outcomes as the substantive impact of care on the well-being of the child or the performance of the health care system.


Figure 1
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  		FIGURE 1 MH logic model.

 
The distinction between the MH activity of "care planning with child/family" and the indicators of "family centeredness" is subtle. We considered the elements of care planning, such as collaborative goal setting and the preparation of written management plans, as MH activities in this domain. We considered parent reports of an enhanced experience of care or documentation that a care plan was in place indicators of care being more family centered—an outcome of medical homes.

We conducted a systematic search of the medical literature through Medline and nursing/ allied health literature through Cumulative Index to Nursing and Allied Health Literature (CINAHL). Inclusion criteria specified that studies need to be quantitative, focused on populations of CSHCN aged 0 to 18 years of age residing in the United States, published between 1986 and November 2006 in a peer-reviewed journal that included abstracts, written in English, and based on primary or secondary data analysis. Studies could include adults but were required to report data on children separately. We disregarded findings reported by studies that included only children with asthma where the study design was a pre-post intervention without comparison group design because children with asthma, particularly those selected based on illness severity, tend to improve over time regardless of intervention17 making it difficult to attribute findings from these studies to the intervention. We also reviewed references of selected articles and relevant reviews, and consulted with experts for recommendations of relevant articles.

Search terms were divided into 3 categories: condition, activity, and outcome (Table 1). Activity and outcome terms were based on the logic model. All terms in each category were separated by "or," and the 3 categories were joined by an "and" condition. Some terms were duplicated in the intervention and outcome term lists to ensure that the search yielded as many relevant articles as possible.


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  		TABLE 1 Search Terms

 
Two reviewers screened one third of titles and abstracts for inclusion. Differences in determination of eligibility were reviewed and discussed. One reviewer screened the remaining titles and abstracts. The project lead (CH), also an MH expert, reviewed any questionable titles and abstracts to determine eligibility. Study design, population characteristics, sample size, intervention, and findings were abstracted into a Microsoft Access database. Quality was assessed by categorizing the study design according to widely established hierarchies of study design quality (eg, randomized, controlled trials [RCTs]; pre-post intervention with comparison group; pre-post intervention without comparison group; cohort; and cross-sectional).


   RESULTS
TOP
 ABSTRACT
 ORGANIZATION OF THE REVIEW
 RESULTS
DISCUSSION
 REFERENCES
 
We selected 33 articles reporting on 30 distinct studies. Figure 2 shows the selection process. The studies used the following designs: rRCTs (n[r] = 6), pre-post intervention with comparison (ie, comparison group intervention) (n = 1), pre-post intervention without comparison (ie, noncomparison group intervention) (n = 4), cohort (n = 3), and cross-sectional (n = 16). Seven studies analyzed data from the National Survey of Children with Special Health care Needs (NSCSHCN). Eleven articles studied children with asthma.


Figure 2
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  		FIGURE 2 Article selection.

 
The MH-related activities observed in each article are shown in Table 2. Articles are ordered by the number of activities observed, starting with those studying the most activities. Over half the articles studied ≤2 MH activities. Only 9 studies observed ≥4 MH activities. No articles studied all of the MH activities included in the logic model. Only 1 article studied an intervention specifically modeled after the MH concept.18 Table 3 shows how we categorized specific indicators found in the articles under the logic model outcomes. The outcome most frequently studied was FCC (n = 18). Twenty-eight articles found some significant relationships between MH activities and positive outcomes.


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  		TABLE 2 MH Activities and Outcomes in Selected Articles

 

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  		TABLE 3 Indicators of Impact of MH in the Desired Direction

 
Findings are summarized below by outcome, with an emphasis on comparison group studies. We first present the RCT and comparison group intervention studies followed by noncomparison group intervention, cohort, and cross-sectional studies. Key findings can be found in Table 4; Table 2 summarizes the results as determined by both significance and direction of findings. We describe findings in a desired direction (eg, improved outcomes) as positive, nondefinitive findings as not significant, and findings in an undesired direction as adverse. We did not define direction on clinic visits because it is unclear whether a change in this outcome implies a desired impact; however these findings are included in Table 4.


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  		TABLE 4 Key Findings from Selected Articles

 
Effectiveness
Half of the comparison group studies investigating effectiveness resulted in positive findings. Two studies based on the same RCT investigated the effects of a planned care intervention on children with asthma. One study, which collected parent interview data, found greater frequency of controller use in the intervention group than in the control group. However, the other study, which collected claims data, found no significant difference in purchase of medication, an indicator of medication use.19,20 One asthma-focused Breakthrough Series collaborative (BTS) intervention study found that patients at intervention sites improved more in asthma process of care.21 An asthma-focused BTS RCT found no differences in appropriate asthma medication use.22

Both associational studies on effectiveness found some positive results. Families who received asthma care from a primary care provider (PCP) were more likely than those getting care from the emergency department (ED) to measure peak flow and to use inhaled β agonists.23 Physician rating of a treatment alliance scale with adolescents was associated with adherence to medication use; however, associations were not found when analyzing parent or adolescent treatment alliance scale ratings.24

Efficiency
Three of 6 comparison group studies investigating impact of MH on efficiency found positive effects of MH activities. One RCT studied an intervention targeting high-risk infants, where participants received acute care, well-child care, and social services. Fifty-seven percent fewer infants in the intervention group were admitted into the ICU; infants who were admitted to the ICU spent 42% fewer days there. The increase in follow-up care costs was offset by the decrease in ICU costs but did not result in overall cost savings.25 Two analyses of a single intervention, 1 short-term and 1 long-term follow-up, assessed the impact of an intervention in which physicians attended educational seminars focused on the development of provider-family partnerships for children with asthma. The long-term follow-up study found that children in the intervention group had fewer hospitalizations, but neither study found any difference in ED visits.26,27 An RCT observing the effects of an asthma-focused BTS resulted in a difference in ED visits in children who came from the subset of practices that participated in the full BTS. Fifty-one percent of children in the intervention group required an ED visit before the intervention compared with only 22% after the intervention. However, no difference was found when comparing children from all practices involved in the collaborative with the control group. Hospitalizations did not differ between groups.22 No impact on cost was found in a community-based care coordination RCT study.28 A comparison group study examining the effects of another asthma-focused BTS found no difference in acute service use.21

Two of 3 noncomparison intervention studies found associations between MH activities and efficiency. After an intervention where resources were allocated to subspecialty divisions for care coordination expansion as determined by the division, annual hospital admissions and median hospital length of stay decreased.29 A study examining the Pediatric Alliance for Coordinated Care (PACC) intervention, where a nurse practitioner visited children with severe needs at home to coordinate care, found fewer hospitalizations but no change in ED visits.18 Berman and colleagues found that a decrease in inpatient costs immediately after the implementation of a hospital-based primary care intervention did not offset an increase in outpatient costs to the hospital resulting in overall increased hospital costs. Also, no differences were found in ED visit or hospitalization rates.30

Two of 5 associational studies found positive relationships between MH and efficiency. Decreased continuity of care was related to increased hospitalizations among children seen at an health maintenance organization (HMO).31 ED risk decreased with each asthma-related PCP visit in children seen at a large multi-specialty group.32 No association was found between having a usual source of care (USC) and ED visits for children with asthma.33 A survey of Iowa Medicaid enrollees found no relationship between degree of medical home-ness (based on the MH Index) and cost.28,34 Connection with a PCP was not associated with adherence to keeping a follow-up appointment after an asthma-related ED visit.35 Ratings on a physician-family goal alliance scale was not associated with ED use or hospitalizations.24

Family Centeredness
Six studies with comparison groups examined family centeredness, with 4 finding positive effects. Families of children participating in a home care intervention were significantly more likely to feel that their provider listened to their concerns. However, no differences were found in the 5 other experience of care measures.36 Families seeing physicians participating in an FCC educational program reported higher rates of satisfaction both immediately after and 2 years after the intervention.26,27 After an asthma-focused BTS intervention, families were more likely to receive self-management education, a written action plan, instruction on inhaled medication use, peak flow measurement, and collaborative goal setting, but were not more satisfied with services.21 No difference in percentages of children with written care plans was found after another asthma-focused BTS intervention.22 No difference was found in satisfaction after a care coordination RCT.28

Two noncomparison group intervention studies resulted in positive associations. An increase in written care plans, goal setting, and viewing of medical charts but no difference in satisfaction was found after the PACC intervention.18 After an intervention targeting rural CSHCN, care coordination satisfaction was higher, but no change in satisfaction with other services was found.37

Cross-sectional studies, including 4 using the NSCSCHN and 5 other studies, found generally positive associations between MH activities and FCC. Parent–provider relationship was associated with smooth transition into adult health care38 and satisfaction.39 Parent-provider discussions about transition-related issues was generally associated with having an MH.40 Ratings on 4 of 5 family-centeredness factors were associated with satisfaction.41

Parent assessment of a multidisciplinary epilepsy clinic indicated that staff attitudes and provision of information about seizures were related to higher quality ratings.42 Having a USC was associated with greater satisfaction.43 In a survey of mothers of children with Down Syndrome, less discrepancy between expectation of versus actual relationship with provider showed associations with greater satisfaction with care.44 Families who saw a PCP for asthma were more likely to receive a written management plan, instruction on peak flow monitoring, and child-specific trigger avoidance.23 The more asthma-related PCP visits, the more likely the child was to have a review of symptoms and peak flow diary, to receive education on peak flow meter use, medication use, and asthma.32

Timeliness
Seven studies, none with comparison groups, found positive associations between MH and timeliness of care. After the PACC intervention, parents reported having telephone calls returned on a timely basis.18 Rural families reported improved access to mental health services after receiving intensive care coordination and social support.37 More children receiving asthma care from their PCP were able to get a same-day appointment and received an after-hours telephone contact than those receiving asthma care from the ED.23

Four studies using data from the NSCSHCN analyzed outcomes related to timeliness. Not having an MH was related to likeliness to delay or forgo care.45 Ease of service use was associated with FCC factors and having an MH.41,46 Lower ratings of FCC factors (ie, provider spends enough time, listens) by families from New York state were associated with higher rates of delayed or forgone care.47

Health/Functional Status
Half of the comparison group studies found that MH-related interventions had a strong effect on health status. One RCT studied health status several years after the implementation of a pediatric home care intervention which involved care coordination and social support. At a 4- to 5-year follow-up, patients participating in the program had higher scores on a child mental health measure.48 Another found that 48% fewer infants receiving an acute and chronic care intervention had life-threatening illnesses.25 Studies on the planned asthma care intervention RCT resulted in inconsistent findings. One study found that children in the intervention group experienced fewer asthma symptom days per year and had a higher reduction of oral steroid bursts per year.19 However, the other study found no difference in asthma exacerbations.20 A community-based care coordination intervention had no impact on illness status or missed school days.28 An asthma-focused BTS intervention comparison group study had no impact on missed school/ work days or β 2 agonist prescriptions, an indicator of poor asthma control.21

Two noncomparison group intervention studies found relationships with MH activities and better functional status. Fewer parents of children participating in the PACC intervention missed >20 work days after the intervention, but no difference was found in missed school days.18 A decrease in missed school days was found after an intensive care coordination intervention targeting rural families.37

All NSCSHCN studies and 1 of 2 other cross-sectional studies found results in the hypothesized direction (ie, better health status associated with having an MH). Children in families who never or sometimes felt like a partner with their provider were more likely to miss school and have unmet needs.39 Over twice as many families without an MH reported having unmet needs but no associations were found between missed school days and having an MH.45 Decreased provider sensitivity to family values and customs was related increased unmet needs in families with children who needed vision care.49 Having a USC was found to be associated with filling or refilling a rescue bronchodilator.33 Connection with a PCP was not found to be associated with functional morbidity, days/nights with a cough or poor sleep, or missed school days.23

Family Functioning
One noncomparison group intervention study and 3 cross-sectional studies observing family functioning found an association in the desired direction. Family strain and need for financial and social support was lower after participation in an intervention targeting CSHCN in rural areas.37 In a survey of mothers of children with Down Syndrome, less discrepancy between expectation of versus actual relationship with a provider showed associations with higher levels of family functioning.44 Poor family centeredness was associated with increased family stress in families of children diagnosed with a brain or spinal tumor.50 Physician treatment alliance scale rating was associated with parent rating on a family functioning scale.24

Cost
One study that assessed an intervention where subspecialty programs at a children's hospital were provided resources to enhance care coordination at their discretion found a positive impact on cost; however, significance was not measured. Adjusted hospital inpatient charges for chronic conditions fell from $28.1 million in 1989 when the intervention was implemented to $14.6 million in 1995.29


   DISCUSSION
TOP
 ABSTRACT
 ORGANIZATION OF THE REVIEW
 RESULTS
 DISCUSSION
REFERENCES
 
The evidence in this review supports our hypothesis that CSHCN receiving care in an MH experience better outcomes than children receiving care in non-MH settings. Although results were not universal, positive impacts were found for MH activities on each outcome studied. Outcomes with the most compelling positive results included family centeredness, effectiveness, timeliness, health status, and family functioning. Inconsistencies in the definition of MH activities and in the assessment of outcomes preclude our ability to answer the second study question of whether programs undertaking more activities have better outcomes than programs undertaking fewer such activities.

Several factors could explain the inconsistency of findings across studies. Some studies assessed interventions seeking to improve the function of practices or the clinicians in those practices through efforts to change their behavior or organization through training (a BTS or a seminar for providers on enhancing FCC); the effectiveness of these interventions depends on whether the intervention changed provider/practice behavior, whether the change was well implemented, and whether the desired implementation had the potential to be effective. Other studies examined more direct interventions, such as hiring a care coordinator or extending hours/accessibility of a practice. In these latter studies, the element of whether a change was implemented is assured; effectiveness only depends on the quality of the change and its efficacy. Other potential causes of nonsignificant findings might include ceiling effects, imprecise measures and an inadequate amount of time between implementation of the change and assessment of effectiveness.

In including studies with only 1 or 2 elements of the MH, we were clearly assuming that "medical home-ness" is not an all or none phenomenon, but that there are degrees to which the idealized concept is realized in practice. That we found an association between individual elements and broader outcomes suggests this framing is helpful and that practices can start to see better results without full scale implementation.

One could legitimately ask whether the MH as assessed through this review is different from primary care per se, as many of the specific activities studied—such as identification of a continuous provider over time—are indistinguishable from primary care. In our view, the MH concept and the definition of primary care differ little.51 However, because the reality of primary care has come to differ so broadly from its ideal definition, and because the elements required to make primary care effective in improving outcomes for persons with chronic illness have been clarified, the reframing of primary care as the MH serves a useful purpose. These elements include resources required for care coordination, training and tools for care planning, patient registries, and others. Many of the intervention studies here (excepting the quality improvement interventions) entailed special grant or organizationally funded services (such as a care coordinator). These studies do not of themselves inform questions of sustainability or the feasibility of implementation in real world settings with readily available resources. The quality improvement intervention studies and the cross sectional analyses, however, all should inform effectiveness (versus efficacy).

The review has several methodologic limitations. After assuring consistency with a second, expert reviewer, only 1 reviewer screened articles for inclusion. The selected studies are diverse and often difficult to compare. As a result, we could not pool data for meta-analysis. Much of this review reports findings from cross-sectional, cohort, and noncomparison group intervention designs, none of which provide strong evidence of causality. One third of these studies observe children with asthma, with unknown generalizeability to the larger population of CSHCN. The frequency of targeting children with asthma is likely because asthma is a common condition seen in primary care settings and therefore a good target for study.

Even with these limitations, this evidence review indicates the impact of ≥1 MH activities on outcomes for CSHCN. Including separate MH activities allowed us to collect important information on which have been studied and what they found. Finally, we included noncomparison group intervention studies, cohort, and cross-sectional studies because we correctly predicted that there would be few studies with comparison groups examining the impact of MH attributes on outcomes of CSHCN. Although results in noncomparison group intervention studies cannot control for secular trends, they can indicate potential impacts on outcomes. Similarly, cohort and cross-sectional designs allow researchers to collect data on a large sample to guide the focus of future research.

Evidence exists supporting the benefits of MH and related interventions, such as care coordination, in the adult population.51–53 A study conducted on a quality improvement intervention on adults and children with diabetes, asthma, and hypertension found a positive effect on processes of care for asthma and diabetes.54 There is also evidence supporting the positive impact of key aspects of the MH, such as continuity of care, in children without special health care needs.55–57 An ED diversion program that provided care coordination, multiple locations and extended office hours targeting children without chronic conditions on Medicaid found that children in the intervention visited the ED fewer times than children in the control group.58

Additional research on the impact of MH on CSHCN is recommended. We suggest that research be conducted on interventions that encompass the full MH construct; on interventions targeting aspects of the MH not or only minimally studied to date (eg, physical/operational modification, population monitoring, and cultural competency); and incorporate key outcomes not yet studied (eg, safety, equity, developmental, family, and cost). Moreover, the field would benefit from more rigorous study methods that incorporate experimental or quasi-experimental designs, using standardized and consistent measures, conducting long-term follow-up studies, and examining a more diverse population in terms of diagnoses. Additional mixed methods research, combining qualitative and quantitative methods, should explore the practice characteristics that can successfully take on the attributes of the "medical home," as well the types of interventions and supports that are needed to facilitate the creation of these practices and sustain them over time. In addition, additional research needs to explore how to identify and establish the appropriate balance in services between comprehensive specialty-based services for children with specific uncommon chronic conditions—such as cystic fibrosis and sickle cell disease—and the primary care MH. Taking these steps would allow for a richer evidence base supporting the benefits of the MH.


   ACKNOWLEDGMENTS
 
We thank our funders at the MCHB (Cooperative Agreement 5 U53MC04473-03-00) for support.

We appreciate the helpful comments by members of our advisory committee on an earlier version of this article.


   FOOTNOTES
 
Accepted Jun 6, 2008.

Address correspondence to Kirsten Klatka, MSW, Center for Child and Adolescent Health Policy, 50 Staniford St, Suite 901, Boston, MA 02114. E-mail: kklatka{at}partners.org

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

The views in this article are those of the authors and do not necessarily represent the views of our funders or advisory committee.


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 ABSTRACT
 ORGANIZATION OF THE REVIEW
 RESULTS
 DISCUSSION
 REFERENCES
 

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