Considerations for Alternative Decision-Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities: Policy Statement.

With advances in medical care, more youth with intellectual and/or developmental disabilities (IDD) are transitioning into adulthood. Patient- and family-centered, integrated care is warranted around this time of transition. Support teams (including the youth, caregivers, teachers, and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth's capacity for independent decision-making. Care teams should consider the varied levels of alternative decision-making support, which may include supported decision-making, medical proxy decision-making, power of attorney, and/or establishment of legal guardianship arrangements, to support the youth's health and well-being optimally. Ultimately, if independent decision-making is not appropriate, the goal for youth with IDD should be the least restrictive alternative, while preserving human rights and human dignity and promoting their autonomy. These considerations review alternative decision-making support, concepts, and legal requirements available for youth with IDD and their care teams. Pediatricians can support youth with IDD and their families in the transition process and decision-making autonomy by actively engaging the youth in care decisions, supporting needs for augmentative communication, fostering their expression of preferences and understanding of care decisions, and linking them to resources such as the medical-legal partnership model.

Home-Based Emergency Preparedness for Families of Children and Youth With Special Healthcare Needs: A Scoping Review.

Children and youth with special healthcare needs (CYSHCN) are at disproportionate risk of harm from widespread disasters and from life-safety emergencies. These risks may be mitigated by providing preparedness training and support to family caregivers. We conducted a scoping review to identify and map the scholarly literature on home-focused preparedness of families with CYSHCN. Our search strategy yielded 22 relevant articles; 13 pertained to life-safety emergencies, 5 centered on widespread disasters, and 4 addressed preparedness on multiple scales. Approaches to measure or attempt to improve emergency preparedness levels in CYSHCN and their families were diverse and included interviews and focus groups; didactic, video-based, or side-by-side instruction; simulated medical crises; and provisioning of emergency kits. For the studies that involved an intervention (n=15, 68%), several proxy indicators of preparedness were used, including caregiver knowledge, skill, or comfort level with managing emergencies that could affect their CYSHCN; completion of preparedness tasks; and reduction in adverse clinical outcomes. Despite the varied methodologies, prevailing themes in the studies were that family caregivers of CYSHCN felt underprepared for emergencies and disasters, desired training to improve their preparedness at home, and benefited from such trainings, at least in the short term, across domains of self-efficacy, skill, and health outcomes of their CYSHCN. Although more research is needed to compare preparedness interventions and evaluate the durability of these interventions in larger, more diverse samples of CYSHCN and their families, our findings support incorporating preparedness training into preventive care encounters and the hospital-to-home transition.

The Medical Home and Mental Health Services in Children and Youth with Special Health Care Needs.

BACKGROUND AND OBJECTIVES: Children and youth with special health care needs (CYSHCN) commonly experience mental health concerns, but conditions are often not identified or treated within primary care. Mental health care is often not a primary focus of pediatric primary care, but the medical home model has potential to address these concerns more adequately. The purpose of this study is to examine the relationship between the medical home and use of mental health services in CYSHCN. METHODS: Data came from the Medical Expenditure Panel Survey years 2015-2017, a nationally representative survey of health and healthcare in US families. The study included CYSHCN ages 6-17. We compared the use of mental health services, expenditures, and psychotropic medications across CYSHCN with and without a medical home using multivariable regression. RESULTS: 45% of CYSHCN received care within a medical home. CYSHCN with and without a medical home reported similar frequency of office-based mental health visits (21.2% versus 25.2%), average expenditures for visits ($147 versus $128), and psychotropic medications (11.9% versus 15.1%). Medical home status was not associated with office-based mental health visits, use of psychotropic medications, or cost for either. CONCLUSIONS: CYSHCN with mental health care needs face barriers to satisfactory care. Creating better connections between primary and mental health care could help to ameliorate this problem. Findings suggest the medical home, a more comprehensive primary care model, may not address mental health care needs of CYSHCN.

Communication Preferences of Parents and Caregivers of Children and Youth With Special Healthcare Needs During a Hypothetical Infectious Disease Emergency.

Children and youth with special healthcare needs are at risk for severe consequences during infectious disease emergencies. Messages for parents and caregivers from trusted sources, via preferred channels, that contain the information they need, may improve health outcomes for this population. In this mixed methods study, we conducted a survey (N = 297) and 80 semistructured interviews, with 70 caregivers of children and youth and 10 young adults with special healthcare needs, between April 2018 and June 2019 in Pennsylvania. The survey presented 3 scenarios (ie, storm, disease outbreak, radiation event); the interviews included questions about storms and an outbreak. This article addresses only the disease outbreak data from each set. Participants were recruited through convenience samples from an urban tertiary care children's hospital and practices in a statewide medical home network. In this article, we summarize the preferred information sources, channels, and content needs of caregivers of children and youth with special healthcare needs during an infectious disease emergency. Nearly 84% of caregivers reported that they believe their child's doctor is the best source of information. Other preferred sources include medical experts (31%); the US Centers for Disease Control and Prevention (30%); friends, family, and neighbors (21%); and local or state health and emergency management (17%). Pediatric healthcare providers play an important role in providing information to parents and caregivers of children and youth with special healthcare needs during an infectious disease emergency. Public health agencies can establish health communication plans that integrate medical practices and other reliable sources to promote the dissemination of accurate information from trusted messengers.

Family Experience of Caregiver Burden and Health Care Usage in a Statewide Medical Home Program.

OBJECTIVE: To evaluate family-reported caregiver experiences and health care utilization of patients enrolled in the Pennsylvania Medical Home Program (PA-MHP) statewide practice network and compare results to PA-MHP practices' Medical Home Index (MHI) scores. We hypothesized families enrolled in higher-scoring patient-and-family-centered medical homes (PCMH) on completed MHIs would report decreased caregiver burden and improved health care utilization. METHODS: We analyzed surveys completed by families receiving care coordination services in PA-MHP's network and each practice's mean MHI score. A total of 3221 caregivers completed surveys evaluating hours spent coordinating care/week, missed school/workdays, sick visits, and emergency department (ED) visits. A total of 222 providers from 54 participating PA-MHP practices completed the nationally recognized MHI. Family/practice demographics were collected. We developed multivariate logistic regression models assessing independent associations among family survey outcomes and corresponding practices' MHI scores. RESULTS: Families enrolled in high-scoring PCMHs had decreased odds of spending >1 h/wk coordinating care (odds ratio [OR] 0.82, adjusted OR [aOR]: 0.70, 95% confidence interval [CI] 0.55-0.90), missing workdays in the past 6 months (OR 0.82, aOR: 0.72, 95% CI 0.69-0.97), and ED visits in the past 12 months (OR 0.83, aOR: 0.81, 95% CI 0.65-0.99) in comparison to families enrolled in lower-scoring PCMHs. Families enrolled in higher-scoring PCMHs did not report fewer sick visits despite fewer ED visits, indicating more appropriate health care utilization. High-scoring PCMHs had lower percentages of publicly insured and low-income children. CONCLUSIONS: Higher-scoring PCMHs are associated with decreased caregiver burden and improved health care utilization across diverse PA practices. Future studies should evaluate interventions uniformly improving PCMH quality and equity.

Primary care providers need education and resources to provide optimal care for children and adults with spina bifida.

PURPOSE: The objective of this study was to describe the knowledge, attitudes, and practices related to caring for youth with SB within a statewide pediatric primary care medical home network. METHODS: Health care professionals who were members of the Pennsylvania Medical Home Program (PAMHP) statewide network were surveyed on sociological demographics, confidence in and knowledge of topics that impact the spina bifida (SB) population, education on SB, designating responsibility of care, tasks completed in the office, and transition from pediatric to adult care from October 2016 through November 2016. RESULTS: Among 67 respondents, 78%believed counseling families/caregivers about the impact of SB on everyday life was a shared responsibility between primary care physicians (PCP) and SB clinics. Eighty five percent of participants indicated they had exposure to SB through clinical courses or didactics in training but only 54%of participants felt knowledgeable on the impact of SB on everyday life. CONCLUSION: Findings suggest a need for increased educational efforts, improved awareness of SB, and access to evidence-based guidelines for PCPs to promote accessible and coordinated care to individuals with SB.

Maternal postpartum depression: risk factors, impacts, and interventions for the NICU and beyond.

PURPOSE OF REVIEW: Postpartum depression (PPD) negatively impacts caregivers, infants, siblings, and entire families. Mothers with infants admitted to the neonatal intensive care unit (NICU) face additional risk for PPD, coupled with risk factors extending beyond a NICU admision. The novelty of this review is the focus on maternal PPD for mothers with infants admitted to the NICU. Interventions aimed at limiting and preventing PPD in this population include: prenatal and postpartum depression screening, PPD symptom awareness and monitoring, and trauma-informed care. RECENT FINDINGS: PPD, the most frequent complication of childbirth, affects approximately 10-15% of mothers worldwide. Prevalence rates increase to 40% for mothers whose infant is admitted to the NICU. PPD can affect maternal and child health across the life course and predispose future generations to a myriad of developmental, psychosocial, and physical challenges. Prevalence rates are higher for racial and ethnic minorities, immigrant and refugee populations, and mothers in rural locations. Trauma-informed care is suggested at individual and organizational levels, leading to better care for those with and without previous trauma exposure. SUMMARY: Increasing PPD symptom awareness, screening for PPD, and connections with resources should begin during prenatal visits. Care teams should discuss barriers to resources for mothers, children, and families to improve access and support.

Children With Special Needs: Social Determinants of Health and Care Coordination.

Care coordination (CC) facilitates access to resources/services for children/youth with special health care needs (CYSHCN). We conducted a cross-sectional analysis of the 2009-2010 National Survey of CSHCN to examine socioeconomic factors related to report of receiving adequate CC services for CYSHCN. Descriptive statistics were used to describe sociodemographic characteristics of respondents and examine socioeconomic factors. Receiving adequate CC varied by socioeconomic variables including income (100% to 199% federal poverty line [FPL]; aOR [adjusted odds ratio] = 0.848; 95% CI [confidence interval] = 0.722-0.997; P < .05), insurance (uninsured; aOR = 0.446; 95% CI = 0.326-0.609; P < .0001), and marital status (never married; aOR = 0.79; 95% CI = 0.64-0.97; P < .05). More families reporting adequate CC had private insurance, non-Hispanic white ethnicity, income >400% federal poverty level, and 2-parent households. Findings suggest unmet needs in terms of adequate access or knowledge leading to insufficient provision of CC for families with the greatest needs. Further analysis identifying specific deficits and implementing strategies to address these disparities is warranted.

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home.

This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

Sex Trafficking Victims at Their Junction with the Healthcare Setting-A Mixed-Methods Inquiry.

U.S.-born citizens are victims of human trafficking typically exploited through sex trafficking. At least some of them interact with healthcare providers during their trafficking experience; yet a majority goes unidentified. Although protocols and training guides exist, healthcare providers often do not have the necessary skills to identify and assist victims of sex trafficking. Understanding where victims seek care and barriers for disclosure are critical components for intervention. Thus, this study interviewed survivors of sex trafficking to ascertain: a) healthcare settings visited during trafficking, b) reasons for seeking care, and c) barriers to disclosing victimization. An exploratory concurrent mixed-methods approach was utilized. Data were collected between 2016-2017 in San Diego, CA and Philadelphia, PA (N = 21). Key findings: 1) Among healthcare settings, emergency departments (76.2%) and community clinics (71.4%) were the most frequently visited; 2) medical care was sought mainly for treatment of STIs (81%); and 3) main barriers inhibiting disclosure of victimization included feeling ashamed (84%) and a lack of inquiry into the trafficking status from healthcare providers (76.9%). Healthcare settings provide an opportunity to identify victims of sex trafficking, but interventions that are trauma-informed and victim-centered are essential. These may include training providers, ensuring privacy, and a compassionate-care approach.

Development of a Multidisciplinary Medical Home Program for NICU Graduates.

OBJECTIVE: Typical primary care practices are often not equipped to meet the medical, developmental or social needs of infants discharged from a neonatal intensive care unit (NICU). These needs are exacerbated for infants and caregivers residing in poverty. This article discusses a multidisciplinary, family-centered medical home designed to address the needs of this special population. METHODS: This is a descriptive analysis of a cohort of patients in the Next Steps Program (NSP), a multidisciplinary primary care medical home. Key program elements include: continuity of care from the NICU to primary care, routine developmental surveillance, care coordination, and proactive screening to address medical and social needs. RESULTS: The NSP has become a primary referral source for local NICUs, with a total of 549 medically fragile infants enrolled from its inception in 2011 through 2016. Caregivers and patients experience psychosocial stressors at averages statistically significantly higher than the rest of the Commonwealth of Pennsylvania and the US. Although patients in the program use medical resources beyond that of typically developing infants, hospital utilization among this patient cohort is trending down. DISCUSSION: Caring for medically fragile NICU graduates can be daunting for families given the array of necessary services, supports, and resources to maximize their potential. A multidisciplinary primary care medical home, such as the NSP, is a successful model of patient care demonstrating favorable associations with health care utilization, care coordination, and addressing/improving family functioning and their experience.

Pediatricians' vaccine attitudes and practices before and after a major measles outbreak.

The objective of this study was to describe how a sample of pediatricians were impacted by and responded to the Disneyland measles outbreak in the United States. We conducted three repeated cross-sectional, online surveys in 2014 (before the outbreak), 2015, and 2016 (after the outbreak) among members of three state chapters of the American Academy of Pediatrics. We assessed pediatricians' level of willingness and length of time comfortable delaying the measles-mumps-rubella (MMR) vaccine before and after the outbreak. Frequency of alternative immunization schedule requests and creation of office immunization policies due to the outbreak were measured. The sample included 304 pediatricians in 2014, 270 in 2015, and 221 in 2016. We found no significant changes in willingness or comfort delaying the MMR vaccine before and after the outbreak. In 2015, 38% of pediatricians reported fewer requests for alternative immunization schedules and 20% created stricter office immunization policies. A subsample of pediatricians reported administering the MMR vaccine earlier in the recommended time frame and taking extra precautions in waiting rooms due to the outbreak. Our results suggest that this measles outbreak did not lead to significant changes in attitudes or practices among this sample, but did modestly affect office immunization policies and practices.

The Role of Integrated Care in a Medical Home for Patients With a Fetal Alcohol Spectrum Disorder.

Fetal alcohol spectrum disorder (FASD) is an umbrella term used to describe preventable birth defects and intellectual and/or developmental disabilities resulting from prenatal alcohol exposure. The American Academy of Pediatrics has a previous clinical report in which diagnostic criteria for a child with an FASD are discussed and tools to assist pediatricians with its management can be found. This clinical report is intended to foster pediatrician awareness of approaches for screening for prenatal alcohol exposure in clinical practice, to guide management of a child with an FASD after the diagnosis is made, and to summarize available resources for FASD management.

The Disaster Information Needs of Families of Children with Special Healthcare Needs: A Scoping Review.

Families with children who have access and mobility challenges, chronic illness, or intellectual or developmental disabilities require targeted messages before, during, and after disasters to ensure that they understand risks to their children's health and can take measures to avoid harm and build resilience. A scoping review was conducted to assess current evidence for optimal ways to address the disaster information needs and communication preferences of families with children and youth with special healthcare needs. The disaster information needs of such families remain understudied, with few published evidence-based practices. Much of the relevant research focuses on information content, specifically the preparedness needs of these families; disaster recovery information for them remains a major gap. The few studies that have been performed suggest that parents with children and youth with special healthcare needs require additional information, education, and training to develop an effective disaster preparedness plan for their children. They are also largely unaware of schools' disaster plans, and schools are often unable to meet parents' expectations for timely, accurate information during a disaster. Several guidance documents highlighted the importance of completing an emergency information form before an event. Several studies suggested that one-on-one education or counseling was a strategy for encouraging preparedness planning; others highlighted potential value in incorporating families directly into disaster risk reduction planning. Evidence about channel preferences and their effectiveness in this population was generally lacking. Future studies should expand the evidence basis for optimal communication during all disaster phases both with parents of children and youth with special healthcare needs and with children directly.

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.

The medical home for children with autism spectrum disorder: an essential element whose time has come.

PURPOSE OF REVIEW: The purpose of this review is to describe the role of the medical home in children with autism spectrum disorder (ASD). A high-quality medical home is essential, given the increase in prevalence of ASD and the array of services, community partners, specialists, therapists, and healthcare team members needed to care for this population. RECENT FINDINGS: Providing care through the medical home model results in fewer unmet needs. Care coordination and integration are the aspects of the medical home currently most lacking. Navigating the healthcare landscape for children with ASD may be enhanced with patient navigators, integration of physical and behavioral health, and telehealth services. SUMMARY: Children with ASD have an increased number of medical and mental health needs. Obtaining care via a medical home has been shown to decrease unmet healthcare needs. However, they are less likely to receive care through the medical home model compared with other children with special healthcare needs. Barriers identified by families include a lack of early identification, limited knowledge on educational plans, and unknown community resources. Barriers identified by providers include lack of time, training, and resources. Providing care coordination and family-centered care in a medical home model are essential for children with ASD.

Are Graduating Residents Trained and Prepared to Engage in Medical Home Activities in Practice?

A national, random sample of 1000 graduating pediatric residents was surveyed in 2014 on receipt of training in medical home activities and preparedness to engage in same in practice. Of 602 survey respondents (60% response), 71.8% reported being very/fairly knowledgeable about medical homes. Most residents (70.0% to 91.3%) reported they received training in 6 medical home activities; more than one fourth wished for more training in 4 of 6 activities. The majority (62.5% to 77.3%) reported very good/excellent perceived preparedness. Residents with continuity clinic experiences at 2 or more sites and with continuity clinic experience at a community health center were more likely to report very good/excellent preparedness in multiple medical home activities. Overall, residents feel knowledgeable, trained, and prepared to engage in medical home activities as they are leaving residency. Opportunities exist to further explore the influence of additional training in specific activities and the number and type of training site experiences on perceived preparedness.