Background: The 1997 legislation authorizing the United States Child Health Insurance Program sparked progress to measure and publicly report on children’s healthcare services quality and system performance. To meet the moment, the national Child and Adolescent Health Measurement Initiative (CAHMI) public-private collaboration was launched to put families at the center of defining, measuring and using healthcare performance information to drive improved services quality and outcomes. Methods: Since 1996 the CAHMI followed an intentional path of collaborative action to (1) articulate shared goals for child health and advance a comprehensive, life-course and outcomes-based healthcare performance measurement and reporting framework; (2) collaborate with families, providers, payers and government agencies to specify, validate and support national, state and local use of dozens of framework aligned measures; (3) create novel public-facing digital data query, collection and reporting tools that liberate data findings for use by families, providers, advocates, policymakers, the media and researchers ( Data Resource Center, Well Visit Planner ); and (4) generate field building research and systems change agendas and frameworks ( Prioritizing Possibilities, Engagement In Action ) to catalyze prevention, flourishing and healing centered, trauma-informed, whole child and family engaged approaches, integrated systems and supportive financing and policies. Conclusions: Lessons call for a restored, sustainable family and community engaged measurement infrastructure, public activation campaigns, and undeterred federal, state and systems leadership that implement policies to incentivize, resource, measure and remove barriers to integrated systems of care that scale family engagement to equitably promote whole child, youth and family well-being. Population health requires effective family engagement.

Well-child care is a near-universal service for young children toward which a great deal of time and professional resources are devoted but for which there is scant evidence of effectiveness in routine practice. It is composed of many components, the value of which likely varies with the quality of their provision and the needs and priorities of the children and families who receive them. Achieving more efficient and effective preventive care will require that pediatric practices segment the population they serve and design schedules and staffing to match patients' health, well-being, personal and social circumstances, and service needs. Care should be individualized and include essential screening, tests, procedures, and education on the basis of assessment of patients' and families' needs and priorities. The traditional schedule of individual, comprehensive preventive care visits should be reconsidered and replaced with a schedule that allows complete care to be provided over a series of visits, including those for acute and chronic care. Preventive pediatric care should be provided in family-centered, team-based practices with strong linkages to other providers in the community who serve and support children and families. Care should make use of the wide variety of modalities that exist, and face-to-face time should be reserved for those services that are both important and uniquely responsive to in-office intervention. This model of preventive care will require changes in training, responsibilities and reimbursement of health care team members, and enhanced communication and collaboration among all involved, especially with families.

INTRODUCTION:Children with medical complexity frequently lack coordinated and family-centered care and are best cared for in a medical home.METHOD:We assessed concordance between provider and family perceptions of care management improvements during a prospective, 3-year study of nine complex care clinics and 42 primary care clinics. Using a pre-post design, we compared provider and parent perceptions of changes in care coordination and family-centered care responses using paired t tests, Spearman rank correlations, and linear regression.RESULTS:Provider scores significantly increased in every domain (range: 14.1 points [data management], 23.0 points [chronic care management]; p < .001). Parent perceptions improved only for shared decision making improved significantly (2.2 points, p < .01).DISCUSSION:These results indicate that it is possible to improve the medical home for children with medical complexity through a quality improvement initiative, but that provider perception of the improvement may be greater than parents' perceptions.

In light of concerns over the potential detrimental effects of declining care continuity, and the need for connection between patients and health care providers, our multidisciplinary group considered the possible ways that relationships might be developed in different kinds of health care encounters. We were surprised to discover many avenues to invest in relationships, even in non-continuity consultations, and how meaningful human connections might be developed even in telehealth visits. Opportunities range from the quality of attention or the structure of the time during the visit, to supporting relationship development in how care is organized at the local or system level and in the use of digital encounters. These ways of investing in relationships can exhibit different manifestations and emphases during different kinds of visits, but most are available during all kinds of encounters. Recognizing and supporting the many ways of investing in relationships has great potential to create a positive sea change in a health care system that currently feels fragmented and depersonalized to both patients and health care clinicians. The current COVID-19 pandemic is full of opportunity to use remote communication to develop healing human relationships. What we need in a pandemic is not social distancing, but physical distancing with social connectedness.

The role of patients and families has evolved over the years,from being viewed as entities who were told what to do, to consumers of health services, to being central to health system design and clinical decision-making.When designing health care practices and programs to be patient- and family-centered, we believe that parents of children with medical complexity (CMC) bring valuable viewpoints and experiences to the table. Good health and functional outcomes for CMC and their families are dependent on active family engagement with their health care partners. We apply the Patient Engagement in Redesigning Care Toolkit (PERCT) model to describe the experience of complex care programs with engaging families at various levels of program design and function, including strengths and pitfalls experienced with each PERCT category. Operationalizing the health care system to treat patients and families as equal stakeholders is necessary if we want to succeed in a patient-centered, value-based environment.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) comprise only 6% of the pediatric population, account for similar to 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.

Children with medical complexity experience frequent hospitalizations and pose a unique challenge for the pediatric hospitalist and their healthcare team. Pediatric hospitalists are ideally positioned to champion improved care coordination for CMC and to address the areas of need in clinical practice, quality improvement and research. Lessons learned from programs who were Healthcare Innovation Award recipients from Center for Medicare and Medicaid Innovation that were aimed at improving care for this population are presented. We focused on care coordination activities implemented during hospitalization. Through a series of meetings with the participating programs, we identified common themes across awarded programs. Programs described key aspects of care coordination during the hospital stay, beginning on admission (multidisciplinary team goal setting, family partnership and action planning), through hospitalization (integrating outpatient and inpatient care), as well as during and after discharge (linking to community-based systems and supports, expanding the transition concept). Finally, we present actionable steps for inpatient providers seeking to improve care for this patient population at the time of hospitalization.

Objective. To evaluate an innovative curriculum meeting new pediatric residency education guidelines, Special Care Optimization for Patients and Education (SCOPE). Methods. Residents were randomized to intervention (n = 23) or control (n = 25) groups. Intervention residents participated in SCOPE, pairing them with a child with special health care needs (CSHCN) and faculty mentor to make a home visit, complete care coordination toolkits, and participate in case discussions. The primary outcome was resident self-efficacy in nine skills in caring for CSHCN. Secondary outcomes included curriculum feasibility/acceptance, resident attitudes, and family satisfaction. Results. Response rates were ≥65%. Intervention residents improved in their self-efficacy for setting patient-centered goals compared with controls (mean change on 4-point Likert-type scale, 1.36 vs 0.56, P < .05). SCOPE was feasible/acceptable, residents had improved attitudes toward CSHCN, and families reported high satisfaction. Conclusion. SCOPE may serve as a model for efforts to increase residents’ self-efficacy in their care of patients with chronic disease.

Objective. Care for children with medical complexity (CMC) relies on pediatricians who often are ill equipped, but striving to provide high quality care. We performed a needs assessment of pediatricians across diverse subspecialties at a tertiary academic US children’s hospital about their continuing education needs regarding the care of CMC. Methods. Eighteen pediatricians from diverse subspecialties were asked to complete an online anonymous open-ended survey. Data were analyzed using modified grounded theory. Results. The response rate was 89% (n = 16). Of participants, 31.2% (n = 5) were general pediatricians, 18.7% (n = 3) were hospitalists, and 50% (n = 8) were pediatric subspecialists. Pediatricians recognized the need for skills in care coordination, giving bad news, working in interprofessional teams, and setting goals of care with patients. Conclusions. Practicing pediatricians need skills to improve care for CMC. Strategically incorporating basic palliative care education may fill an important training need across diverse pediatric specialties.

OBJECTIVE:To identify existing challenges and potential strategies for providing complex care training to future pediatricians from a national group of educators.METHODS:Data were collected from pediatric educators involved in complex care at the Pediatric Educational Excellence Across the Continuum national meeting. Participants completed an anonymous 15-item survey adapted from the Association of American Medical Colleges (AAMC) Best Practices for Better Care initiative and participated in a focus group to understand the challenges and potential solutions to pediatric complex care education. Data were analyzed using grounded theory.RESULTS:Of the 15 participants, 9 (60%) were in educational leadership positions. All participants provided care to children with medical complexity (CMC), although 80% (n = 12) reported no formal training. Thematic analysis revealed learners' challenges in 2 domains: 1) a lack of ownership for the patient because of decreased continuity, decision-making authority, and autonomy, as a result of the multitude of care providers and parents' distrust; and 2) a sense of being overwhelmed as a result of lack of preparedness and disruptions in work flow. Participants suggested 3 mitigating strategies: being candid about the difficulties of complex care, discussing the social mandate to care for CMC, and cultivating humility among learners.CONCLUSIONS:Residency education must prepare pediatricians to care for all children, regardless of disease. Training in complex care involves redefining the physician's role so that they are better equipped to participate in collaboration, empathy and advocacy with CMC. This study is the first to identify specific challenges and offer potential solutions to help establish training guidelines.

In hospitals around the nation, children with medical complexity (CMC) receive life-prolonging interventions for debilitating diseases. These children are alive because of disease-focused interventions including multiple medications, innovative procedures, durable medical equipment, and continuous care. Their lives depend on an intricate dance of family caregivers— along with health care providers—who must manage long-term illnesses in their homes and communities in the context of a health care system that is only beginning to address the challenges of complex chronic disease care for children. In 2000, the American Academy of Pediatrics acknowledged that many children living with lifethreatening conditions would benefit from concurrent palliative care throughout the course of their illness— not only in a terminal phase. Over a decade later, it is time to consolidate the integration of palliative care into a comprehensive approach for all CMC and their families.

In July, the ACGME will require pediatric residents to provide a medical home focusing on care coordination and longitudinal management of CSHCN. This requires innovative educational strategies to improve patient care and function with reduced resident clinical hours.

Abstract SCOPE is a longitudinal voluntary training program that pairs a child with special health care needs (CSHCN) with a pediatric resident and faculty mentor to form a SCOPE Team. The SCOPE Team does not replace existing healthcare providers but works with them, the patient, and the family across care settings to construct the child's care to meet the patient's and family's goals. The core components of SCOPE are: (1) monthly communication with the family; (2) at least one in-person meeting with the family to complete “Toolkit” items which include a Goal Keeper to articulate goals of care, a Contact Tree for contingency planning and healthcare navigation and a Plan of Care; (3) one home visit; and (4) three one-hour meetings with SCOPE directors and mentors to discuss SCOPE cases and to reflect on the SCOPE experience. This resource provides all necessary information and materials for program implementation and execution at other institutions. Resources are available upon request from the authors for SCOPE program evaluation. SIGNIFICANCE: Successful management of pediatric illness is leading to a growing population of children with special healthcare needs (CSHCN). The Maternal and Child Health Bureau defines CSHCN as “being at increased risk for chronic physical, developmental, behavioral, or emotional conditions requiring health services beyond those needed by healthy children.” Care for CSHCN is an important issue for today's healthcare system as CSHCN account for over 15% of the pediatric population and for over 70% of healthcare costs. The American Academy of Pediatrics (AAP) recommends the family-centered medical home (FCMH) and high level care coordination to improve the care for CSHCN. And yet, according to the AAP's Periodic Survey of Fellows, there continue to be significant deficiencies in the adherence to FCMH in the day-to-day care of CSHCN. In their survey, the AAP found that fewer than 50% of responding pediatricians integrate subspecialty care plans into their management of CSHCN, and fewer than 25%: (1) contact schools about a child's health and education; (2) meet with hospital discharge planning teams to assist in a child's transition back to the community; or (3) schedule time with a family to discuss the results of a visit to a subspecialist. The SCOPE program was developed to provide future pediatricians with “hands-on” training on elements of the FCMH and care coordination so vital to improving care for CSHCN. EFFECTIVENESS: SCOPE has been studied as a prospective randomized controlled trial at Lucile Packard Children's Hospital at Stanford University. SCOPE was associated with significant improvement in resident self-efficacy for patient-centered goal-setting with CSHCN. Intervention Fidelity, Feasibility and Acceptance: Over one-quarter of pediatric residents (n=22 out of 80, 27.5%) volunteered for SCOPE at Stanford University. All of intervention residents, faculty mentors and families wanted to continue participating in SCOPE after the 4-month study period. All residents responded that they would recommend SCOPE to other residents, faculty and CSHCN. In terms of the time commitment for SCOPE residents; 37.5% reported spending <1 hour/week on the program, 50% spent 1–5 hours, and 12.5% spent 6–10 hours. Overall, 70% communicated with their family at least monthly and 85% completed all Toolkit items. Primary Outcome: Learner Self-Efficacy SCOPE was associated with improvements in residents' perceived self-efficacy in caring for CSHCN. Of the nine self-efficacy items surveyed on a 5-point Likert scale, the intervention group showed statistically significant improvement in establishing patient-centered goals of care (p=0.04) compared with controls. For the intervention residents, there were statistically significant retrospective pre- and post-intervention improvements in another five out of nine self-efficacy domains including resident's ability to: (1) understand a child with special needs within the context of their own home; (2) understand how a child with special needs might impact the lives of their family; (3) create a plan of care for medically complex patients; (4) help a family navigate the healthcare system; and (5) find community resources that might benefit a child with special needs. Secondary Outcome: Patient Satisfaction All participating families wanted to continue in SCOPE at the end of the 4-month program. Although there were no statistically significant results from family data, the authors found that: 100% of families reported that their SCOPE resident understood how medical, behavioral, or other health conditions affect their child and family's day-to-day life, 57% had help with care coordination, and 100% rated their SCOPE resident as excellent when it came to “really listening to my opinions about my child's care.” Generally, 25% of participating families were satisfied and 75% were very satisfied with the SCOPE program.

OBJECTIVE:Current pediatric well-child care (WCC) may be inefficient and inadequate with respect to primary care physicians' abilities to deliver prescribed preventive and developmental services. New Internet-related technologies may improve the efficiency and effectiveness of WCC. This article examines the potential resource cost implications associated with a change in the delivery model of WCC in a capitated, integrated managed care system.STUDY DESIGN:Decision analyses and Monte Carlo simulations were used to estimate the variation in resource costs between the current WCC model and a high-performance WCC model, stratifying by age, risk level, and the proportion of pediatric members that may not seek WCC.METHODS:Demographic and health care utilization data associated with 14,910 pediatric enrollees, ages newborn to 5 years, enrolled at Kaiser Permanente Colorado were used to simulate the change in costs attributable to a change in the model of WCC.RESULTS:Simulation models and sensitivity analyses suggest that the implementation of the high-performance WCC model is likely to be relatively resource cost neutral in a managed care system.CONCLUSIONS:Preliminary findings suggest that implementation of innovative changes in WCC may allow for efficient reallocation of resources to higher-risk children in a relatively cost neutral manner. However, innovative changes that involve the use of unreimbursed non-face-to-face encounters and nonphysician health care professionals may present challenges with respect to implementation of a new model of WCC in a fee-for-service environment.

There is a large and persistent failure to achieve widespread dissemination of evidence-based practices in child health care. Too often studies demonstrating evidence for effective child health care practices are not brought to scale and across different settings and populations. This failure is not due to a lack of knowledge, but rather a failure to bring to bear proven methods in dissemination, diffusion, and implementation (DD&I) science that target the translation of evidence-based medicine to everyday practice. DD&I science offers a framework and a set of tools to identify innovations that are likely to be implemented, and provides methods to better understand the capabilities and preferences of individuals and organizations and the social networks within these organizations that help facilitate widespread adoption. Successful DD&I is dependent on making the intervention context sensitive without losing fidelity to the core components of the intervention. The achievement of these goals calls for new research methods such as pragmatic research trials that combine hypothesis testing with quality improvement, participatory research that engages the target community at the beginning of research design, and other quasi-experimental designs. With the advent of health care reform, it will be extremely important to ensure that the ensuing large demonstration projects that are designed to increase integrated care and better control costs can be rapidly brought to scale across different practices settings, and health plans and will be able to achieve effectiveness in diverse populations.

BACKGROUND: Internet-based developmental screening is being implemented in pediatric practices across the United States. Little is known about the application of this technology in poor urban populations. OBJECTIVE: We describe here the results of focus groups, surveys, and in-depth interviews during home visits with families served by an urban safety-net organization to address the question of whether it is possible to use Internet or e-mail communication for medical previsit engagement in a population that is majority Hispanic, of low socioeconomic status, and has many non–English-speaking families. METHODS: This study included families in 4 clinics within a safety-net health care system. The study design included the use of (1) parental surveys (n = 200) of a convenience sample of parents whose children received primary care in the clinics, (2) focus groups (n = 7 groups) with parents, and (3) in-depth interviews during home visits with 4 families. We used χ2 and multivariate analyses to compare Internet access in English- and Spanish-speaking families. Standard qualitative methods were used to code focus-group texts and identify convergent themes. RESULTS: In multivariate analysis, independent factors associated with computer use were English versus Spanish language (odds ratio: 3.2 [95% confidence interval: 1.4–6.9]) and education through at least high school (odds ratio: 4.7 [95% confidence interval: 2.3–9.7]). In focus groups, the concept of parental previsit work, such as developmental screening tests, was viewed favorably by all groups. However, many parents expressed reservations about doing this work by using the Internet or e-mail and stated a preference for either paper or telephone options. Many Spanish-speaking families discussed lack of access to computers and printers. CONCLUSIONS: In this economically disadvantaged population, language and maternal education were associated with access to the Internet. Given the potential power of previsit work to tailor well-child visits to the needs of individual families, alternative strategies to using the Internet should be explored for populations without reliable Internet access.

We describe here the use of a conceptual framework for implementing and disseminating in a Health Maintenance Organization an evidence-based model of well-child care (WCC) that includes developmental and preventive services recommended by the American Academy of Pediatrics. Twenty-first Century WCC is a parent-centered, team-based, primary care model that combines online previsit assessments-completed by parents and caregivers regarding clinic-based weight, growth, and development assessments-with vaccinations and anticipatory guidance. Nurses, nurse practitioners, developmental specialists, and pediatricians all play roles in the WCC model. Patient and clinician interaction, health records, and resources are all facilitated through a Web-based diagnostic, management, tracking, and resource information tool. Implementation and dissemination concepts and their attendant practices and tools can reliably be used to augment strategic decisions about how to best disseminate and implement innovations in health care delivery. Unlike innovations that are embedded only in technical systems, validated models of team-based health care have multiple components that must be made compatible with complex sociotechnical systems. Interpersonal communication, work, coordination, and judgment are key processes that affect implementation quality. Implementation can involve tailoring to a particular site and customizing either the model or the organizational context to accommodate it.

OBJECTIVE: The goal was to evaluate the feasibility and acceptance of a new model for well-child care (WCC) in a large health maintenance organization. METHODS: We designed a new model of WCC that engages families in Internet-based developmental and behavioral screening, allows for review of the results before the visit, and allows for selection of the appropriate visit type (e-visit, e-visit with brief provider visit, or extended encounter). The new model was pilot-tested in 2 practices within a large health maintenance organization. Seven providers and 70 parents participated in the study. Parents and providers were surveyed regarding their experience and satisfaction with the encounter. RESULTS: Seventy-five percent of parents thought that the online previsit assessment improved or very much improved the WCC visit. However, 12% of parents found the online assessment somewhat or very difficult to use. All of the parents found the e-visit or the e-visit with brief provider visit acceptable or very acceptable, compared with a standard WCC visit. All 7 providers thought that use of the new model helped focus the visit and that they would continue or definitely continue to use the model. CONCLUSIONS: We demonstrated the feasibility of a new model of WCC that engaged parents in previsit assessment and used alternative visit types to tailor care to the needs of the family. Future research will be needed to examine the impact of this model on important WCC outcomes.

Research has shown that access to an asthma specialist improves asthma outcomes. We hypothesized that we could improve access to expert asthma care through a telemedicine link between an asthma specialist and a school-based asthma program. We conducted a prospective cohort study in 3 urban schools to ascertain the feasibility of using an asthma-focused telemedicine solution. Each subject was seen by an asthma expert at 0, 8, and 32 weeks. The assessment and recommendations for care were sent to the primary care physician (PCP) and parents were told to contact their physician for follow-up care. Eighty three subjects participated in the study. Subjects experienced improvement (P < .05) in family social activities and the number of asthma attacks. Ninety four percent of subjects rated the program as good or excellent. This study demonstrates the feasibility and acceptance of a school-based asthma program using a telemedicine link to an asthma specialist.

We conducted a qualitative study of the attitudes of teens and parents toward the use of a patient portal. We conducted two teen and two parent focus groups, one teen electronic bulletin board, and one parent electronic bulletin board. Videotapes and transcripts from the groups were independently analyzed by two reviewers for significant themes, which were then validated by two other members of the research team. Twenty-eight teens and 23 parents participated in the groups. Significant themes included issues about teens' control of their own healthcare; enthusiasm about the use of a patient portal to access their providers, seek health information, and make appointments; and concerns about confidentiality. In summary, there was considerable support among teens and parents for a patient portal as well as concerns about confidentiality. The teen portal affords an opportunity to negotiate issues of confidentiality.