Renee M. Turchi

Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems

Understanding a care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves, as well as for pediatricians, pediatric medical subspecialists/surgical specialists, and anyone providing services to children and families. Care coordination is an essential element of a transformed American health care delivery system that emphasizes optimal quality and cost outcomes, addresses family-centered care, and calls for partnership across various settings and communities. High-quality, cost-effective health care requires that the delivery system include elements for the provision of services supporting the coordination of care across settings and professionals. This requirement of supporting coordination of care is generally true for health systems providing care for all children and youth but especially for those with special health care needs. At the foundation of an efficient and effective system of care delivery is the patient-/family-centered medical home. From its inception, the medical home has had care coordination as a core element. In general, optimal outcomes for children and youth, especially those with special health care needs, require interfacing among multiple care systems and individuals, including the following: medical, social, and behavioral professionals; the educational system; payers; medical equipment providers; home care agencies; advocacy groups; needed supportive therapies/services; and families. Coordination of care across settings permits an integration of services that is centered on the comprehensive needs of the patient and family, leading to decreased health care costs, reduction in fragmented care, and improvement in the patient/family experience of care.

Care coordination for CSHCN: associations with family-provider relations and family/child outcomes.

OBJECTIVE: To examine the association between receiving adequate care coordination (CC) with family-provider relations and family/child outcomes. METHODS: We analyzed data from the 2005–2006 National Survey of Children With Special Health Care Needs. Eligible subjects were the 88% of families asked about experience with CC, service use, and communication. Respondents also reported on demographic characteristics, health status, family-provider relations, and family/child outcomes. Weighted, multivariate logistic regression models were constructed to assess independent associations of adequate CC with outcomes. RESULTS: Among families with children with special health care needs asked about CC, 68.2% reported receiving some type of CC help. Of these, 59.2% reported receiving adequate CC help, and 40.8% reported inadequate CC. Families that reported adequate compared with inadequate CC had increased odds of receiving family-centered care, experiencing partnerships with professionals, and satisfaction with services. They had decreased odds of having problems with referrals for specialty care, missing >6 school days because of illness (previous year), and visiting the emergency department more than twice in the previous 12 months (P < .001). Those who reported adequate compared with inadequate CC had decreased odds of the following: more than

The Family-Centered Medical Home: Specific Considerations for Child Health Research and Policy

500/y of out-of-pocket expenses, family financial burden, spending more than 4 hours/week coordinating care, and stopping/reducing work hours. CONCLUSIONS: Parental report of adequate CC was associated with favorable family-provider relations and family/child outcomes. Additional efforts are needed to discern which aspects of CC are most beneficial and for which subgroups of children with special health care needs.

The medical home--improving quality of primary care for children.

S ince the initial conceptualization of the medical home in the 1960s and 70s in pediatrics, its definition and principles have evolved. The addition of clinicians in family medicine and internal medicine, policymakers, payer groups, and consumer groups to medical home study and implementation has given tremendous positive momentum to the movement to create patientand family-centered medical homes for children, adolescents and adults. While there is a great deal of similarity between medical home concepts and models for the care of adults and children, some principles should be emphasized in child and adolescent health, and a few health concepts are unique. These have important implications for how child-relevant research and policy related to the medical home should be promoted. This paper describes perspectives on the primary care medical home from the standpoint of child and adolescent health.

A Narrative Review of Patient and Family Engagement: The "Foundation" of the Medical "Home".

The concept of a medical home appears to be a key driver for enhancing the value of health services as care systems are transitioned to meet the ongoing challenges of improving quality and containing costs. This article provides an overview of the challenges faced in United States health care delivery systems that affect child health, explains how the medical home might address them, describes methods for measuring quality in medical homes, and identifies barriers to implementation of the model.

Factors Influencing Physical Activity in Children and Youth with Special Health Care Needs: A Pilot Study

Background:Patient and family engagement (PFE) is vital to the spirit of the medical home. This article reflects the efforts of an expert consensus panel, the Patient and Family Engagement Workgroup, as part of the Society of General Internal Medicine’s 2013 Research Conference. Objective:To review extant literature on PFE in pediatric and adult medicine and quality improvement, highlight emerging best practices and models, suggest questions for future research, and provide references to tools and resources to facilitate implementation of PFE strategies. Methods:We conducted a narrative review of relevant articles published from 2000 to 2015. Additional information was retrieved from personal contact with experts and recommended sources from workgroup members. Results:Despite the theoretical importance of PFE and policy recommendations that PFE occurs at all levels across the health care system, evidence of effectiveness is limited, particularly for quality improvement. There is some evidence that PFE is effective, mostly related to engagement in the care of individual patients, but the evidence is mixed and few studies have assessed the effect of PFE on health outcomes. Measurement issues and the lack of a single comprehensive conceptual model pose challenges to progress in this field. Recommendations for future research and a list of practical tools and resources to facilitate PFE are provided. Conclusions:Although PFE appeals to patients, families, providers, and policy-makers, research is needed to assess outcomes beyond satisfaction, address implementation barriers, and support engagement in practice redesign and quality improvement. Partnering with patients and families has great potential to support high-quality health care and optimize outcomes.

Health-Related Quality of Life in Overweight/Obese Children Compared With Children With Inflammatory Bowel Disease

Background. Evidence suggests that children and youth with special health care needs (CYSHCN) have decreased physical activity compared to peers. This study describes weight status and physical activity in CYSHCN and identifies factors associated with physical activity and community resources to promote physical activity. Methods. Parents (n = 21) and CYSHCN (n = 23) were recruited from a pediatric clinic. The most prevalent diagnoses were autism (n = 7, 30%) and cerebral palsy (n = 3, 13%). Interviews were conducted with parents for information on physical activity and community resources. Childrens height and weight were measured to calculate body mass index (BMI). Results. The majority of CYSHCN (n = 13, 59%) were obese. CYSHCN did not meet recommended levels of 60 minutes of daily physical activity and engaged in more screen time than recommended. More children with cognitive/behavioral/emotional diagnoses were obese compared to children with physical/medical diagnoses. A majority of parents (n = 16, 73%) indicated their CYSHCN need more supervision to participate in physical activity in community programs. Conclusion. The majority of CYSHCN in this study were obese and sedentary. Resources to promote physical activity are needed for this population.

Building a Medical Home for Children and Youth with Special Health Care Needs

Purpose. This study examined the health-related quality of life (HRQOL) of pediatric patients with overweight/obesity compared with that of patients with inflammatory bowel disease. Methods. Differences between disease groups in their PedsQL 4.0 HRQOL survey scores were analyzed using unpaired t tests and analyses of variance. Results. Scores of patients with overweight/obesity were as low as scores of patients with inflammatory bowel disease. Parent/guardian-proxy social functioning scores of the overweight/obese group were statistically significantly lower than scores of the inflammatory bowel disease group, and the parents/guardians reported significantly lower HRQOL scores than the patients. Conclusions. Overweight/obese children have HRQOL scores as impaired as those of children with inflammatory bowel disease. According to proxy-reported scores, overweight/obesity is associated with lower social functioning. Thus, it is important for health care providers to recognize obesity’s relationship to patients’ psychosocial health and provide holistic care that addresses the severity of this disease.

Evaluation of a statewide medical home program on children and young adults with asthma

Delivering high-quality, patient-/family-centered, and efficient care is the cornerstone of primary care. Packaging this care in the context of a medical home is the standard of health care delivery for children and adults. Central to delivering care in the medical home is a team-based approach to care. Early and continuous screening of children improves the health and well-being of the child beginning from birth and throughout his or her lifetime. Family-centered care is a central pillar to the medical home concept. Family-centered care is distinguished by the recognition that the family is the constant in a child’s life, while the service systems and support personnel within those systems change. In addition, families’ attitudes may reflect traditional family, ethnic, or cultural influences that approach the concept of illness and chronic conditions in different ways. A high-quality functioning medical home does not need to provide every service alone, but does require effective partnerships across various settings and the community via coordination across systems. Care coordination is also a hallmark of the medical home in practice. Information sharing can improve coordination of care. The pediatric clinician plays an important role in facilitating transition from pediatric-oriented to adult-oriented health care. Planning for transition should be a standard part of providing care for all youth and young adults, not just youth with special health care needs.

Child Abuse in Children and Youth with Special Health Care Needs

Abstract Objective: Asthma, the most common chronic condition among children, accounts for significant healthcare utilization and impact on quality of life. Care coordination in a medical home is considered standard practice, but has not been rigorously evaluated. Methods: We initiated this pilot study of children/young adults with asthma (n = 967), ages: birth to 24 years, receiving care from a subset of pediatric practices (n = 20) participating in the Pennsylvania Medical Home Initiative, Educating Practices in Community-Integrated Care (92 practices statewide). We hypothesized children and youth with asthma receiving care coordination in the context of a formal medical home program would experience favorable associations with healthcare utilization and quality of life measures. Results: A total of 9240 care coordination encounters for this cohort of children/youth occurred over 100 days. The average length of care coordination encounter was 20.7 minutes. The most common care coordination activity was referral management (21%) and the care coordinator in the practice most often contacted parent/family and specialists (75%). Children with more severe asthma had more hospitalizations and emergency department (ED) visits than children with less severe asthma. There was a significant decrease in school absences, ED visits and acute care visits for children/youth with asthma with increasing length of time in a medical home program (p < 0.05). Conclusion: Care coordination for children/youth with asthma is feasible and may yield improvements in healthcare utilization, expenditures and quality of life. Larger-scale implementation of care coordination and medical home models for children/youth with asthma and other diagnoses are warranted.