David Bergman, MD

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.

View details for DOI 10.1007/s10995-023-03755-9

View details for PubMedID 37624473

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.

View details for DOI 10.1542/peds.2020-049877

View details for PubMedID 34433687

Children with medical complexity frequently lack coordinated and family-centered care and are best cared for in a medical home.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.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).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.

View details for DOI 10.1016/j.pedhc.2020.08.003

View details for Web of Science ID 000603076100012

View details for PubMedID 32958456

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. [Pediatr Ann. 2020;49(11):e467-e472.].

View details for DOI 10.3928/19382359-20201012-01

View details for Web of Science ID 000598178800006

View details for PubMedID 33170294

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.

View details for DOI 10.1542/peds.2019-2401

View details for PubMedID 32229620

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.

View details for DOI 10.1370/afm.2538

View details for PubMedID 32393566

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.

View details for DOI 10.1542/hpeds.2020-0069

View details for PubMedID 32651217

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.

View details for DOI 10.1177/0009922814564050

View details for PubMedID 25561698

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.

View details for DOI 10.1177/0009922814564049

View details for PubMedID 25561699

To identify existing challenges and potential strategies for providing complex care training to future pediatricians from a national group of educators.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.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.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.

View details for Web of Science ID 000344966800013