Pediatric Medical Subspecialist Use in Outpatient Settings.

Importance: A first step toward understanding whether pediatric medical subspecialists are meeting the needs of the nation's children is describing rates of use and trends over time. Objectives: To quantify rates of outpatient pediatric medical subspecialty use. Design, Setting, and Participants: This repeated cross-sectional study of annual subspecialist use examined 3 complementary data sources: electronic health records from PEDSnet (8 large academic medical centers [January 1, 2010, to December 31, 2021]); administrative data from the Healthcare Integrated Research Database (HIRD) (14 commercial health plans [January 1, 2011, to December 31, 2021]); and administrative data from the Transformed Medicaid Statistical Information System (T-MSIS) (44 state Medicaid programs [January 1, 2016, to December 31, 2019]). Annual denominators included 493 628 to 858 551 patients younger than 21 years with a general pediatric visit in PEDSnet; 5 million beneficiaries younger than 21 years enrolled for at least 6 months in HIRD; and 35 million Medicaid or Children's Health Insurance Program beneficiaries younger than 19 years enrolled for any amount of time in T-MSIS. Exposure: Calendar year and type of medical subspecialty. Main Outcomes and Measures: Annual number of children with at least 1 completed visit to any pediatric medical subspecialist in an outpatient setting per population. Use rates excluded visits in emergency department or inpatient settings. Results: Among the study population, the proportion of girls was 51.0% for PEDSnet, 51.1% for HIRD, and 49.3% for T-MSIS; the proportion of boys was 49.0% for PEDSnet, 48.9% for HIRD, and 50.7% for T-MSIS. The proportion of visits among children younger than 5 years was 37.4% for PEDSnet, 20.9% for HIRD, and 26.2% for T-MSIS; most patients were non-Hispanic Black (29.7% for PEDSnet and 26.1% for T-MSIS) or non-Hispanic White (44.9% for PEDSnet and 43.2% for T-MSIS). Annual rates for PEDSnet ranged from 18.0% to 21.3%, which were higher than rates for HIRD (range, 7.9%-10.4%) and T-MSIS (range, 7.6%-8.6%). Subspecialist use increased in the HIRD commercial health plans (annual relative increase of 2.4% [95% CI, 1.6%-3.1%]), but rates were essentially flat in the other data sources (PEDSnet, -0.2% [95% CI, -1.1% to 0.7%]; T-MSIS, -0.7% [95% CI, -6.5% to 5.5%]). The flat PEDSnet growth reflects a balance between annual use increases among those with commercial insurance (1.2% [95% CI, 0.3%-2.1%]) and decreases in use among those with Medicaid (-0.9% [95% CI, -1.6% to -0.2%]). Conclusions and Relevance: The findings of this cross-sectional study suggest that among children, 8.6% of Medicaid beneficiaries, 10.4% of those with commercial insurance, and 21.3% of those whose primary care is received in academic health systems use pediatric medical subspecialty care each year. There was a small increase in rates of subspecialty use among children with commercial but not Medicaid insurance. These data may help launch innovations in the primary-specialty care interface.

Annual Days With a Health Care Encounter for Children and Youth Enrolled in Medicaid: A Multistate Analysis.

OBJECTIVE: To assess the number of days that children experienced a health care encounter and associations between chronic condition types and health care encounters. METHODS: Retrospective analysis of data from 5,082,231 children ages 0 to 18 years enrolled in Medicaid during 2017 in 12 US states contained in the IBM Watson Marketscan Medicaid Database. We counted and categorized enrollees' encounter days, defined as unique days a child had a health care visit, by type of health service. We used International Classification of Disease-10 diagnosis code categories from Agency for Healthcare Research and Quality's Chronic Condition Indicator System to identify chronic mental and physical health conditions. RESULTS: Median (interquartile range [IQR]) annual encounter days was 6 (2-13). Children in the 91st to 98th and ≥99th percentiles for encounter days experienced a median of 49 (IQR 38-70) and 229 (IQR 181, 309) days, respectively; these children accounted for 52.6% of days for the cohort. As encounter days increased from the 25th to >90th percentile, the percentage of children with co-existing mental and physical health conditions increased from <0.1% to 47.4% (P < .001). Outpatient visits accounted for a total of 68.3% and 62.2% of days for children the 91st to 98th and ≥99th percentiles. CONCLUSION: Ten percent of children enrolled in Medicaid averaged health care encounters at least 1 day per week; 1% experienced health care encounters on most weekdays. Further investigation is needed to understand how families perceive frequent health care encounters, including how to facilitate their children's care in the most feasible way.

National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs.

Children and youth with special health care needs (CYSHCN) "have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally." CYSHCN rely on health systems, which extend beyond traditional health care entities, to optimize their health and well-being. The current US health system is not fully equipped and functioning to meet the needs of CYSHCN. Recognizing this, the Maternal and Child Health Bureau and the US Health Resources and Services Administration established the Research Network on Health Systems for CYSHCN (CYSHCNet, http://www.cyshcnet.org). With input from >800 US stakeholders, CYSHCNet developed a national research agenda on health systems for CYSHCN designed to: 1) highlight important health system challenges faced by key stakeholders (ie, patients and families, health care providers, insurers, administrators, etc.); 2) organize research topics and goals to identify opportunities for improvement, to address challenges and to promote progress toward the ideal health system; and 3) provide a blueprint for health systems research ideas and studies that will guide CYSHCN investigators and other stakeholders going forward. We introduce the 6 research topics currently included in the research agenda-transition to adulthood, caregiving, family health, child health care, principles of care, and financing-to inform and guide investigators as they embark on a trajectory of health systems research on CYSHCN.

Assessing and Addressing Social Determinants of Health Among Children and Youth With Special Health Care Needs.

Over several decades, a field of research has emerged to examine social and environmental factors that contribute to health inequities among children and youth with special healthcare needs (CYSHCN), with the goal of reducing inequities through identifying and mitigating these social determinants of health (SDH). The Children and Youth with Special Healthcare Needs National Research Network (CYSHCNet) national research agenda development process, described in a companion article, recognized SDH, as experienced by CYSHCN, and the effects on health inequity and child and family outcomes as a high priority area. Important gaps named included which strategies best identify and mitigate the effects of negative SDH and which outcomes are most meaningful to families receiving SDH-focused interventions. In this area, the highest priority questions were the following: 1) How can SDH be routinely addressed in the course of care for CYSHCN? 2) Which interventions most effectively integrate SDH to improve child and family outcomes? Here, we discuss the impact of SDH on CYSHCN, efforts to screen for and intervene upon SDH in this population, and gaps in the current research on SDH specific to CYSHCN. We make several recommendations for research studies that will move the field forward. This work should achieve a greater understanding of patterns and impacts of SDH experienced by CYSHCN. It will also contribute to optimizing identification of SDH and improving interventions to achieve equity in health outcomes identified by patients and families as important to them.

Child Health, Vulnerability, and Complexity: Use of Telehealth to Enhance Care for Children and Youth With Special Health Care Needs.

Telehealth, or the use of telecommunications technology and infrastructure to deliver health-related services and information that support patient care, has the potential to improve the quality of care, particularly deficiencies related to access and patient experience of care. Telehealth may also reduce disparities for children and youth with special health care needs (CYSHCN) with barriers to accessing in-person care, for example, those residing in rural areas and children with medical complexity who are particularly fragile. While important foundational work has been done to study telehealth's effectiveness and implementation, key gaps remain regarding its use for CYSHCN. The CYSHCNet national research agenda development process, described in a companion article, identified as key priority areas for future research telehealth as an innovative care delivery model for all CYSHCN and as a mechanism to address rural-urban disparities in health care access. Here, we review the current knowledge around telehealth, identify populations for whom telehealth could be especially beneficial, discuss the important gaps identified, and make recommendations for specific studies that will move the field forward. There are ample opportunities for telehealth to improve health and patient/family experience of care and quality of life for CYSHCN while requiring less time and resources from families accessing this care. Innovative research to inform best practices around incorporation and implementation of telehealth will improve its efficiency and effectiveness and achieve optimal outcomes.

Moving From Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs.

Children and youth with special health care needs (CYSHCN) use disproportionately more health care resources than non-CYSHCN, and their unique needs merit additional consideration. Spending on health care in the United States is heavily concentrated on acute illnesses through fee-for-service (FFS). Payment reform frameworks have focused on shifting away from FFS, addressing health outcomes and the experience of care while lowering costs, particularly for high resource utilizers. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children's health and life course. Spending for children's health is also considered an investment in their growth and development with long-term outcomes at stake, so research questions should focus on where and how such spending should be targeted. This paper discusses high-priority research topics in the area of health care financing for CYSHCN in the context of what is currently known and important knowledge gaps related to investment for CYSHCN. It proceeds to describe 3 potential research projects that can address these topics, following a framework informed by the priority questions identified in a previous multistakeholder research agenda development process. We focus on 3 areas: benefits, payment models, and quality measures. Specific aims and hypotheses are offered, as well as suggestions for approaches and thoughts on potential implications.

Costs and Use for Children With Medical Complexity in a Care Management Program.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) comprise only 6% of the pediatric population, account for ∼40% of pediatric health care spending, and provide an important opportunity for cost saving. Savings in this group can have an important impact on pediatric health care costs. The objective of this study was to assess the impact of a multicenter care management program on spending and use in CMC. DESIGN AND METHODS: We conducted a prospective cohort analysis of a population of 4530 CMC enrolled in a learning collaborative designed to improve care for CMC ages 0 to 21 years identified using 3M Clinical Risk Group categories 5b through 9. The primary outcome was total per-member per-year standardized spending; secondary outcomes included inpatient and emergency department (ED) spending and use. We used a 1:1 propensity score match to compare enrolled patients to eligible nonenrolled patients and statistical process control methods to analyze spending and usage rates. RESULTS: Comparison with the matched group showed a 4.6% (95% confidence interval [CI]: 1.9%-7.3%) decrease in total per-member per-year spending (P < .001), a 7.7% (95% CI: 1.2%-13.5%) decrease in inpatient spending (P = .04), and an 11.6% (95% CI: 3.9%-18.4%) decrease in ED spending (P = .04). Statistical process control analysis showed a decrease in hospitalization rate and ED visits. CONCLUSIONS: CMC enrolled in a learning collaborative showed significant decreases in total spending and a significant decrease in the number of hospitalizations and ED visits. Additional research is needed to determine more specific causal factors for the results and if these results are sustainable over time and replicable in other settings.

Health System Research Priorities for Children and Youth With Special Health Care Needs.

OBJECTIVES: In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixed-methods approach. METHODS: Using surveys, we solicited responses from >800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of ≥7 in all domains. RESULTS: The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized. CONCLUSIONS: High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems.

Relationship-focused vs. Structural Activities in Medical Home Measurement in Pediatrics.

Objectives The Family-Centered Medical Home (FCMH) has become a model of effective and efficient primary care. However, efforts to measure the FCMH may ignore its complexity. We sought to determine whether U.S. primary care pediatricians view structure-focused and relationship-focused practice activities of the FCMH as distinct constructs and how these constructs are associated with practice functions. Methods We analyzed data from the 2012 American Academy of Pediatrics Periodic Survey of Fellows #79 (n = 572) addressing opinions and practice activities related to the FCMH. Through a modified Delphi expert process, we selected items believed to be primarily structure-focused and items that were relationship-focused. Confirmatory factor analysis was used to test whether these constructs were distinct. Separate structural equation models assessed whether structure-focused and relationship-focused activities predicted three broader survey items: (1) interest in FCMH; (2) application for FCMH recognition; and (3) whether a team meets to discuss FCMH improvements. Results The initial two-factor model did not fit well, but improved with movement of two items from the structure to the relationship-focused group. The two factors correlated at r = 0.70. Respondents with increased relationship-focused activities had statistically higher odds of having medium/high interest in FCMH, and having a team meet to discuss FCMH improvements. Respondents with increased structure-focused activities also had higher odds of having team meetings to discuss FCMH improvements, but lower odds of applying for FCMH recognition. Conclusions for Practice The FCMH is multi-dimensional, with relationship- and structure-focused activities differentially linked to pediatrician reports of broader FCMH functions.

Care Coordination for Children With Medical Complexity: Whose Care Is It, Anyway?

Children with medical complexity (CMC) have multiple chronic conditions and require an array of medical- and community-based providers. Dedicated care coordination is increasingly seen as key to addressing the fragmented care that CMC often encounter. Often conceptually misunderstood, care coordination is a team-driven activity that organizes and drives service integration. In this article, we examine models of care coordination and clarify related terms such as care integration and case management. The location of care coordination resources for CMC may range from direct practice provision to external organizations such as hospitals and accountable care organizations. We discuss the need for infrastructure building, design and implementation leadership, use of care coordination tools and training modules, and appropriate resource allocation under new payment models.

Health-care spending and utilization for children discharged from a neonatal intensive care unit.

OBJECTIVES: To describe health-care spending and utilization for infants discharged from the neonatal intensive care unit (NICU). STUDY DESIGN: Retrospective cohort analysis of 4973 NICU graduates in the Truven MarketScan Medicaid database, with follow-up to the third birthday. Health-care spending and utilization after NICU discharge were assessed. Using logistic regression, we assessed clinical characteristics associated with hospitalization and emergency department (ED) visits. RESULTS: Most (69.5%) post-NICU spending occurred within the first year [$33,276 per member per year]. Inpatient care accounted for most (71.6%) of the 3-year spending. The percentages of infants with a 1-year readmission or ED visit were 36.8% and 63.7%, respectively. Medical technology was associated with the highest likelihoods of hospital [aOR 17.8 (95%CI 12.2-26.0)] and ED use [aOR 2.3 (95%CI 1.8-3.0)]. CONCLUSIONS: Hospital care accounts for the majority of spending for NICU graduates. Infants with medical technology have the highest risk of hospital and ED use.

Care System Redesign for Preterm Children After Discharge From the NICU.

Approximately 1 in 8 children in the United States are born preterm. Existing guidelines and research examine the cost of prematurity from the NICU stay and developmental surveillance and outcomes after discharge from the NICU. Preterm children are at greater risk for excess hospitalizations, outpatient visits, and societal costs after NICU discharge. Improved delivery of care and health promotion from the community setting, particularly from the patient-centered medical home, may result in improved growth, health, and development, with accompanying reduction of post-NICU discharge costs and encounters. There has been comparatively little focus on how to promote health and wellness for children born preterm, particularly for community-based providers and payers. Accordingly, health care delivery for NICU graduates is often fragmented, with little guidance on medical management beyond tertiary care follow-up. In this article, we use what is known about chronic care and practice transformation models to present a framework for health care system redesign for children born preterm. We discuss the rationale for NICU graduates as a priority population for health system redesign. Promotion of health and wellness for children born preterm who are discharged to the community setting entails population health management from the patient-centered medical home; comanagement, clinical care protocols, and clinical support from the tertiary care-based tertiary care-based center; and a favorable payer strategy that emphasizes support for chronic care management. Practical suggestions are provided for the practicing physician for the child born preterm as health care systems are redesigned.

Barriers to Care Coordination and Medical Home Implementation.

BACKGROUND: Pediatricians are central in leading the family-centered medical home (FCMH), yet little is known about how provider-perceived barriers to and attitudes toward the FCMH affect implementation. This study aims to assess the relationship between pediatrician-perceived barriers to and attitudes toward FCMH and reported care coordination. METHODS: Pediatricians working in ambulatory care responded to the American Academy of Pediatrics Periodic Survey of Fellows #79 (N = 572, response rate, 59%). Our primary care coordination outcomes were whether pediatricians were: (1) leading a multidisciplinary team; (2) developing care plans; and (3) connecting with support services. Independent variables included barriers to FCMH implementation (lack of communication skills, support services, and time). Associations between outcomes and barriers were assessed by multivariate logistic regression, controlling for pediatrician and practice characteristics. RESULTS: Lack of sufficient personnel was significantly associated with fewer care coordination activities: leading a multidisciplinary team (odds ratio [OR], 0.53), developing care plans (OR, 0.51), and connecting with support services (OR, 0.42). Lacking communication skills was significantly associated with lower odds of development of care plans (OR, 0.56) and assistance with support services (OR, 0.64). Lack of time was significantly associated with lower odds of leading a multidisciplinary team (OR, 0.53). A pediatrician's belief that the FCMH encourages the use of preventive services was significantly associated with increased support services (OR, 2.06). CONCLUSIONS: Pediatricians report a need for sufficient personnel and communication skills to provide care coordination, a core component of the FCMH. Interventions to boost FCMH implementation should focus on providing resources to develop these characteristics.

Adapting practice-based intervention research to electronic environments: opportunities and complexities at two institutions.

BACKGROUND AND PURPOSE: Primary care practice-based research has become more complex with increased use of electronic health records (EHRs). Little has been reported about changes in study planning and execution that are required as practices change from paper-based to electronic-based environments. We describe the evolution of a pediatric practice-based intervention study as it was adapted for use in the electronic environment, to enable other practice-based researchers to plan efficient, effective studies. METHODS: We adapted a paper-based pediatric office-level intervention to enhance parent-provider communication about subspecialty referrals for use in two practice-based research networks (PBRNs) with partially and fully electronic environments. We documented the process of adaptation and its effect on study feasibility and efficiency, resource use, and administrative and regulatory complexities, as the study was implemented in the two networks. RESULTS: Considerable time and money was required to adapt the paper-based study to the electronic environment, requiring extra meetings with institutional EHR-, regulatory-, and administrative teams, and increased practice training. Institutional unfamiliarity with using EHRs in practice-based research, and the consequent need to develop new policies, were major contributors to delays. Adapting intervention tools to the EHR and minimizing practice disruptions was challenging, but resulted in several efficiencies as compared with a paper-based project. In particular, recruitment and tracking of subjects and data collection were easier and more efficient. CONCLUSIONS: Practice-based intervention research in an electronic environment adds considerable cost and time at the outset of a study, especially for centers unfamiliar with such research. Efficiencies generated have the potential of easing the work of study enrollment, subject tracking, and data collection.

The medical home and integrated behavioral health: advancing the policy agenda.

There has been a considerable expansion of the patient-centered medical home model of primary care delivery, in an effort to reduce health care costs and to improve patient experience and population health. To attain these goals, it is essential to integrate behavioral health services into the patient-centered medical home, because behavioral health problems often first present in the primary care setting, and they significantly affect physical health. At the 2013 Patient-Centered Medical Home Research Conference, an expert workgroup convened to determine policy recommendations to promote the integration of primary care and behavioral health. In this article we present these recommendations: Build demonstration projects to test existing approaches of integration, develop interdisciplinary training programs to support members of the integrated care team, implement population-based strategies to improve behavioral health, eliminate behavioral health carve-outs and test innovative payment models, and develop population-based measures to evaluate integration.