Lessons Learned, Best Practices: Care Coordination for Children with Medical Complexity.

Although care coordination has long been established in the health care system in the United States, too often it may compete or work at cross purposes with care teams serving patients and families. Care coordination is a team sport that requires strong clinician-family partnerships as well as adequate time and resources to be done effectively. We incorporate the latest literature to offer clarity for identifying, coordinating, and funding care for children with medical complexity (CMC), the most medically fragile, high-cost subpopulation of children and youth with special health care needs. Algorithms for identifying CMC exist. Calculation of the cost of care for CMC is confounded by cost shifting to families and the variable course of illness and aging in this heterogeneous population. Multiple studies of different sizes have reported similar care coordination team structure, staffing ratios, and cost ranges. We describe models for funding this work and how they can be tailored to individual practice environments. [Pediatr Ann. 2020;49(11):e457-e466.].

Home Visits for Children With Asthma Reduce Medicaid Costs.

We conducted a multicomponent, low-cost, home intervention for children with uncontrolled asthma, the Reducing Ethnic/Racial Asthma Disparities in Youth (READY) study, to evaluate its effect on health outcomes and its return on investment. From 2009 through 2014 the study enrolled 289 children aged 2 to 13 years with uncontrolled asthma and their adult caregivers in Boston and Springfield, Massachusetts. Community health workers (CHWs) led in-home asthma management and environmental trigger remediation education over 5 visits spanning 6 months. Asthma health outcomes and indoor environment data were collected via survey, and health use costs were accessed through Massachusetts Medicaid (MassHealth). Results showed significant improvements in asthma control, health care use, and environmental trigger reduction and a positive return on investment (1.34) for participants who had 2 or more emergency department visits 1 year prior to the first home visit. The CHW asthma home visiting intervention improved trigger management, clinical outcomes, and Medicaid cost savings, demonstrating that asthma home visits improve health quality and reduce costs.

Care coordination for children with medical complexity.

PURPOSE OF REVIEW: We review the literature to help the reader better understand the latest thinking on how best to identify, coordinate and fund care for children with medical complexity, a medically fragile high-cost subpopulation of children and youth with special healthcare needs. RECENT FINDINGS: Proprietary and public algorithms have been developed to identify children with medical complexity. Research on families and healthcare providers of children with medical complexity have identified essential components of effective care coordination. Calculation of the cost of care for this population is confounded by cost shifting to families and the variable course of illness in this heterogeneous high-cost population. Care coordination is a team sport that requires strong family partnerships, adequate time and resources to be done effectively. Multiple studies of different sizes have reported similar care coordination team structure, staffing ratios and cost ranges. Multiple options for funding this work now exist and can be tailored to individual environments. SUMMARY: Effective care coordination can positively impact the care of children with medical complexity. Recent work resulting in a better understanding of the needs of families and providers will guide the development of new technologies and measures.

A Step-by-Step Guide to Building a Complex Care Coordination Program in a Small Setting.

Children with medical complexity comprise a growing population that stresses existing models of pediatric care. This report will describe a care support project that delivered shared plans of care to providers and families of children with medical complexity. This program was built around carefully constructed care support teams where each member had clearly defined roles and responsibilities. The teams worked collaboratively to improve provider communication, create SMART (Specific, Measurable, Assignable, Realistic, and Timely) goals, and perform task tracking. This process created a scaffolding to support community physicians, allowing patients to remain in their local medical homes and to access services closer to home and reducing hospital admissions and emergency room overutilization.

Redesigning Health Care Practices to Address Childhood Poverty.

Child poverty in the United States is widespread and has serious negative effects on the health and well-being of children throughout their life course. Child health providers are considering ways to redesign their practices in order to mitigate the negative effects of poverty on children and support the efforts of families to lift themselves out of poverty. To do so, practices need to adopt effective methods to identify poverty-related social determinants of health and provide effective interventions to address them. Identification of needs can be accomplished with a variety of established screening tools. Interventions may include resource directories, best maintained in collaboration with local/regional public health, community, and/or professional organizations; programs embedded in the practice (eg, Reach Out and Read, Healthy Steps for Young Children, Medical-Legal Partnership, Health Leads); and collaboration with home visiting programs. Changes to health care financing are needed to support the delivery of these enhanced services, and active advocacy by child health providers continues to be important in effecting change. We highlight the ongoing work of the Health Care Delivery Subcommittee of the Academic Pediatric Association Task Force on Child Poverty in defining the ways in which child health care practice can be adapted to improve the approach to addressing child poverty.

Determinants of Health and Pediatric Primary Care Practices.

More than 20% of children nationally live in poverty. Pediatric primary care practices are critical points-of-contact for these patients and their families. Practices must consider risks that are rooted in poverty as they determine how to best deliver family-centered care and move toward action on the social determinants of health. The Practice-Level Care Delivery Subgroup of the Academic Pediatric Association's Task Force on Poverty has developed a roadmap for pediatric providers and practices to use as they adopt clinical practice redesign strategies aimed at mitigating poverty's negative impact on child health and well-being. The present article describes how care structures and processes can be altered in ways that align with the needs of families living in poverty. Attention is paid to both facilitators of and barriers to successful redesign strategies. We also illustrate how such a roadmap can be adapted by practices depending on the degree of patient need and the availability of practice resources devoted to intervening on the social determinants of health. In addition, ways in which practices can advocate for families in their communities and nationally are identified. Finally, given the relative dearth of evidence for many poverty-focused interventions in primary care, areas that would benefit from more in-depth study are considered. Such a focus is especially relevant as practices consider how they can best help families mitigate the impact of poverty-related risks in ways that promote long-term health and well-being for children.

Medically Complex Care: The Newest Competency for Primary Care?

CASE: Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to your practice in the company of her foster caretaker, a maternal aunt. The history you have comes mostly through the lens of her aunt's recall of a variety of clinical encounters and emergency room visits that have taken place at 2 of the region's tertiary care centers, including a prolonged recent hospitalization for failure to thrive. Regrettably, you have no discharge summary on hand from the outside institution.Fortunately, Nola's aunt has come prepared. From her notes, you learn that Nola has a history of feeding difficulties and "global developmental delay." The details of Nola's prenatal and neonatal intensive care unit admission are scant. Nola has been described as having "unusual facial features, such as smallish eyes, low tone, some vision problems." A physical examination demonstrates significant delays in all streams of development. Nola's aunt recalls that she may need a gastrostomy tube pending her weight gain in the next few months.At present, Nola's aunt/foster caretaker is caring for her at home and expresses her concern about 4 major areas: coordinating multiple appointments at various sites, keeping track of involved medical information, getting all of the "paperwork" done to get needed upgrades for a feeding chair, and buying expensive special formula with her own money. Nola's aunt is intelligent and motivated, but she has limited help at home and is overwhelmed with all the aspects of the care. The aunt acknowledges the importance of multiple appointments-feeding support, developmental evaluations, vision, and neurologic assessments. When you inquire who Nola's aunt identifies as her niece's primary care provider, she reports that she has seen different doctors due to the vagaries of her schedule.You conclude that Nola's situation is not likely to improve without a dramatic intervention. As you try to pull together a plan, you wonder what the most effective approach is for the busy clinician. Who should take the lead on a child's care? Can a primary care pediatric clinician partner with other specialists and programs and use other members of a care team effectively? And, does care coordination provide better more cost-effective care?

Transition of adolescents with chronic health conditions to adult primary care: factors associated with physician acceptance.

PURPOSE: To assess the willingness of adult primary-care physicians to transfer young adults with special health care needs (YASHCN) into their practices, and the relative impact of patient characteristics and transition supports. METHODS: Survey of primary care internists and family practitioners using randomized patient characteristics and transition supports in clinical vignettes to assess physician willingness to accept a YASHCN into their practice. RESULTS: 404 responses were received from 601 surveys (response rate 67%). Only 44% rated themselves "willing" or "enthusiastic" to accept a YASHCN. Using four-way ANOVA testing, provider and practice characteristics significantly associated with willingness to accept included gender, years in practice, presence of YASHCN in current practice and whether the practice was accepting new patients. Patient condition and transition support significantly affected willingness to accept; training in internal medicine versus family practice did not. CONCLUSION: Physicians providing primary care for adults express limited willingness to accept YASHCN into their practices. Provider, practice and patient characteristics affected willingness to accept. Although transition supports affected willingness to accept, effects varied markedly across diagnoses and physician gender. Findings have implications for patients and healthcare teams and policy planners.

Adolescent asthma: a developmental approach.

PURPOSE OF REVIEW: The purpose of this review is to update providers on how best to address asthma in adolescents. RECENT FINDINGS: Asthma is a common chronic disease, with increased prevalence in minority populations, especially those living in poverty. Published treatment guidelines form the basis of modern asthma treatment, based on disease severity, frequency of symptoms, and lung function measured by spirometry. Written asthma action plans are recommended for patients with persistent asthma. Treating teens with asthma can be challenging, as they may deny disease, underreport symptoms, abandon medication regimens, and engage in risk-taking behaviors. Psychiatric comorbidities such as depression, anxiety, and even posttraumatic stress disorder can have profound effects on the adolescent with asthma, making the treatment much more challenging. SUMMARY: Pediatricians should utilize a developmental approach, incorporating guideline-based therapies when developing treatment plans for teens with asthma. Resources such as school-based health centers, community health workers, mental health professionals, and possibly asthma specialists are all valuable aids to the physician in the medical home in providing care coordination for their teens with asthma.

Unmet dental needs and barriers to care for children with significant special health care needs.

PURPOSE: The purpose of this study was to conduct the first known large scale survey of parents of children with special health care needs (CSHCN) to determine their child's: oral health status; access to dental care; perceived barriers (environmental/system and nonenvironmental/family); and oral health quality of life, accounting for each child's medical diagnosis and severity of diagnosis. METHODS: A 72-item survey was sent to 3760 families of CSHCN throughout urban and rural Massachusetts. RESULTS: The study yielded 1,128 completed surveys. More than 90% of the children had seen a dentist within the past year; 66% saw a pediatric dentist, and 21% needed intense behavioral interventions. Although most families had high education levels, private dental insurance, and above average incomes, 20% of CSHCN had an unmet dental need. Children with craniofacial anomalies had twice as many unmet needs and children with cystic fibrosis had fewer unmet needs. Children with cerebral palsy, autism, developmental delay, and Down syndrome had more aversions to dental treatment, more treatment complications posed by their medical conditions, and more difficulty finding a dentist willing to provide care. Children with cystic fibrosis, metabolic disorders, or hemophilia encountered fewer barriers to care. CONCLUSIONS: The data paint a picture of high unmet dental needs with subpopulations of children with special health care needs who are more at risk for system barriers and internal family barriers to care based on their medical diagnoses.

Care coordination for children with special health care needs: evaluation of a state experiment.

Care coordination (CC), a component of the medical home, may aid families who have children with special health care needs (CSHCN). Few data link CC to individual patient outcomes. To compare parent-reported outcomes for CSHCN receiving practice-based care coordination with those receiving standard care. This cross-sectional study examined two groups of CSHCN: one that received the services of a care coordinator for a year and one that did not. Parental surveys assessed: access to medical care, practice help and support, satisfaction with services, and parental mental and physical health. Associations between group status and parent-reported outcomes were assessed via regression analyses controlling for sociodemographic and health status variables. We also examined whether CC households who reported higher satisfaction with care had higher scores in the four domains. Parents in the care coordination group reported higher utilization of both primary care and specialist physicians, but did not report better practice help and support, better satisfaction with care, or better overall parental health. Parents in the care coordination group who reported being satisfied with their care rated their PCPs as more helpful than did the comparison families. Parents in this subgroup also reported significantly higher levels of care coordination than did parents in the comparison group. CSHCN appear to have higher PCP and specialist utilization when they receive supplemental care coordination. Additionally, those who are more satisfied with the care coordination they receive are happier with the assistance from their PCP and the overall care coordination provided.

Identifying what pediatric residents are taught about children and youth with special health care needs and the medical home.

OBJECTIVE: To describe what and how pediatric residents in Massachusetts are taught about children and youth with special health care needs (CYSHCN) and the medical home. PARTICIPANTS AND METHODS: Faculty members and residents at Massachusetts' 5 pediatric residency programs were interviewed to identify current curricula and teaching methods related to care of CYSHCN. In addition, residents were surveyed to quantify these concepts. RESULTS: Thirty-one faculty members and 25 residents were interviewed. Most exposure to CYSHCN was reported to occur in inpatient settings. However, most formal teaching about CYSHCN was described as occurring in the ambulatory setting. Promising educational strategies included home and community visits, inclusion of CYSHCN in resident continuity panels, and simulation and role-playing. Overall, the programs had little training emphasis on the lives and needs of CYSHCN and their families outside the hospital setting. Twenty (80%) of the residents interviewed completed the written survey instrument. They noted a high degree of comfort in caring for CYSHCN in various settings and involving families in decision-making about their child's care but expressed less comfort in identifying community resources and collaborating with community agencies and schools. CONCLUSIONS: Programs offer a variety of successful educational and clinical experiences related to the medical home and CYSHCN. The results of our study indicate that residents and faculty members believe that residents would benefit from more formal training opportunities to learn directly from families and community representatives about caring for CYSHCN.

How to best deliver care to children with chronic illness: cystic fibrosis as a model.

PURPOSE OF REVIEW: Children with special healthcare needs benefit when there is close coordination of care for their chronic disease between specialists and primary care providers. The importance of coordination between primary and specialty care has become better recognized with the increased attention to a comprehensive 'medical home' model of care. RECENT FINDINGS: Care coordination requires close communication between primary care providers and specialty care centers. Primary care providers are in an ideal position to assist patients and families by providing care coordination, not only within the healthcare system, but also between the healthcare system and community services and schools. Coordination is best undertaken at the physician practice level, utilizing a team approach. Nonphysician staff provide added value in coordination of care for patients and families. Opportunities for reimbursement for this care are being developed. SUMMARY: Coordination of care for the many children with special healthcare needs can be realized using existing resources. Using cystic fibrosis as an example, implementation methods within pediatric primary care practices are presented and discussed.