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BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) may be at a high risk of neurodevelopmental and mental health conditions given disease comorbidities and lived experiences. Little is known about the prevalence of these conditions at a population level. In this study, we estimated the prevalence of neurodevelopmental and mental health diagnoses in CMC relative to children without medical complexity and measured associations between these diagnoses in CMC and subsequent health care utilization and in-hospital mortality. METHODS: We applied the Child and Adolescent Mental Health Disorders Classification System to identify neurodevelopmental and mental health diagnoses using all-payer claims data from three states (2012-2017). Poisson regression was used to compare outcomes in CMC with neurodevelopmental and mental health diagnoses to CMC without these diagnoses, adjusting for sociodemographic and clinical characteristics. RESULTS: Among 85 581 CMC, 39 065 (45.6%) had ≥1 neurodevelopmental diagnoses, and 31 703 (37.0%) had ≥1 mental health diagnoses, reflecting adjusted relative risks of 3.46 (3.42-3.50) for neurodevelopmental diagnoses and 2.22 (2.19-2.24) for mental health diagnoses compared with children without medical complexity. CMC with both neurodevelopmental and mental health diagnoses had 3.00 (95% confidence interval [CI]: 2.98-3.01) times the number of ambulatory visits, 69% more emergency department visits (rate ratio = 1.69, 95% CI: 1.66-1.72), 58% greater risk of hospitalization (rate ratio = 1.58, 95% CI: 1.50-1.67), and 2.32 times (95% CI: 2.28-2.36) the number of hospital days than CMC without these diagnoses. CONCLUSIONS: Neurodevelopmental and mental health diagnoses are prevalent among CMC and associated with increased health care utilization across the continuum of care. These findings illustrate the importance of recognizing and treating neurodevelopmental and mental health conditions in this population.
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PURPOSE: The aim of this study was to characterize essential factors to the medical home transformation of high-performing pediatric primary care practices 6 to 7 years after their participation in a national medical home learning collaborative. METHODS: We evaluated the 12 primary care practice teams having the highest Medical Home Index (MHI) scores after participation in a national medical home learning collaborative with current MHI scores, a clinician staff questionnaire (assessing adaptive reserve), and semistructured interviews. We reviewed factors that emerged from interviews and analyzed domains and subdomains for their agreement with MHI and adaptive reserve domains and subthemes using a process of triangulation. RESULTS: At 6 to 7 years after learning collaborative participation, 4 essential medical home attributes emerged as drivers of transformation: (1) a culture of quality improvement, (2) family-centered care with parents as improvement partners, (3) team-based care, and (4) care coordination. These high-performing practices developed comprehensive, family-centered, planned care processes including flexible access options, population approaches, and shared care plans. Eleven practices evolved to employ care coordinators. Family satisfaction appeared to stem from better access, care, and safety, and having a strong relationship with their health care team. Physician and staff satisfaction was high even while leadership activities strained personal time. CONCLUSIONS: Participation in a medical home learning collaborative stimulated, but did not complete, medical home changes in 12 pediatric practices. Medical home transformation required continuous development, ongoing quality improvement, family partnership skills, an attitude of teamwork, and strong care coordination functions.
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Assistência Centrada no Paciente/estatística & dados numéricos , Pediatria/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Humanos , Inovação Organizacional , Assistência Centrada no Paciente/organização & administração , Atenção Primária à Saúde/organização & administraçãoRESUMO
OBJECTIVE: To investigate primary care practice ownership and specialist-use patterns for commercially insured children with disabilities. DATA SOURCES AND STUDY SETTING: A national commercial claims database and the Health Systems and Provider Database from 2012 to 2016 are the data sources for this study. STUDY DESIGN: This cross-sectional, descriptive study examines: (1) the most visited type of pediatric primary care physician and practice (independent or system-owned); (2) pediatric and non-pediatric specialist-use patterns; and (3) how practice ownership relates to specialist-use patterns. DATA COLLECTION/EXTRACTION METHODS: This study identifies 133,749 person-years of commercially insured children with disabilities aged 0-18 years with at least 24 months of continuous insurance coverage by linking a national commercial claims data set with the Health Systems and Provider Database and applying the validated Children with Disabilities Algorithm. PRINCIPAL FINDINGS: Three-quarters (75.9%) of children with disabilities received their pediatric primary care in independent practices. Nearly two thirds (59.6%) used at least one specialist with 45.1% using nonpediatric specialists, 28.8% using pediatric ones, and 17.0% using both. Specialist-use patterns varied by both child age and specialist type. Children with disabilities in independent practices were as likely to see a specialist as those in system-owned ones: 57.1% (95% confidence interval [95% CI] 56.7%-57.4%) versus 57.3% (95% CI 56.6%-58.0%), respectively (p = 0.635). The percent using two or more types of specialists was 46.1% (95% CI 45.4%-46.7%) in independent practices, comparable to that in systems 47.1% (95% CI 46.2%-48.0%) (p = 0.054). However, the mean number of specialist visits was significantly lower in independent practices than in systems-4.0 (95% CI 3.9%-4.0%) versus 4.4 (95% CI 4.3%-4.6%) respectively-reaching statistical significance with p < 0.0001. CONCLUSIONS: Recognizing how privately insured children with disabilities use pediatric primary care from pediatric and nonpediatric primary care specialists through both independent and system-owned practices is important for improving care quality and value.
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OBJECTIVE: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance. METHODS: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination. RESULTS: Disability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)-Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907]). CONCLUSIONS: CWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities.
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Over several decades, a field of research has emerged to examine social and environmental factors that contribute to health inequities among children and youth with special healthcare needs (CYSHCN), with the goal of reducing inequities through identifying and mitigating these social determinants of health (SDH). The Children and Youth with Special Healthcare Needs National Research Network (CYSHCNet) national research agenda development process, described in a companion article, recognized SDH, as experienced by CYSHCN, and the effects on health inequity and child and family outcomes as a high priority area. Important gaps named included which strategies best identify and mitigate the effects of negative SDH and which outcomes are most meaningful to families receiving SDH-focused interventions. In this area, the highest priority questions were the following: 1) How can SDH be routinely addressed in the course of care for CYSHCN? 2) Which interventions most effectively integrate SDH to improve child and family outcomes? Here, we discuss the impact of SDH on CYSHCN, efforts to screen for and intervene upon SDH in this population, and gaps in the current research on SDH specific to CYSHCN. We make several recommendations for research studies that will move the field forward. This work should achieve a greater understanding of patterns and impacts of SDH experienced by CYSHCN. It will also contribute to optimizing identification of SDH and improving interventions to achieve equity in health outcomes identified by patients and families as important to them.
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Atenção à Saúde , Determinantes Sociais da Saúde , Adolescente , Criança , Pesquisa sobre Serviços de Saúde , HumanosRESUMO
Telehealth, or the use of telecommunications technology and infrastructure to deliver health-related services and information that support patient care, has the potential to improve the quality of care, particularly deficiencies related to access and patient experience of care. Telehealth may also reduce disparities for children and youth with special health care needs (CYSHCN) with barriers to accessing in-person care, for example, those residing in rural areas and children with medical complexity who are particularly fragile. While important foundational work has been done to study telehealth's effectiveness and implementation, key gaps remain regarding its use for CYSHCN. The CYSHCNet national research agenda development process, described in a companion article, identified as key priority areas for future research telehealth as an innovative care delivery model for all CYSHCN and as a mechanism to address rural-urban disparities in health care access. Here, we review the current knowledge around telehealth, identify populations for whom telehealth could be especially beneficial, discuss the important gaps identified, and make recommendations for specific studies that will move the field forward. There are ample opportunities for telehealth to improve health and patient/family experience of care and quality of life for CYSHCN while requiring less time and resources from families accessing this care. Innovative research to inform best practices around incorporation and implementation of telehealth will improve its efficiency and effectiveness and achieve optimal outcomes.
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Saúde da Criança , Telemedicina , Adolescente , Criança , Acessibilidade aos Serviços de Saúde , Humanos , Qualidade de Vida , População RuralRESUMO
Importance: Children with medical complexity (CMC) have substantial health care needs and frequently experience poor health care quality. Understanding the population prevalence and associated health care needs can inform clinical and public health initiatives. Objective: To estimate the prevalence of CMC using open-source pediatric algorithms, evaluate performance of these algorithms in predicting health care utilization and in-hospital mortality, and identify associations between medical complexity as defined by these algorithms and clinical outcomes. Design, Setting, and Participants: This retrospective cohort study used all-payer claims data from Colorado, Massachusetts, and New Hampshire from 2012 through 2017. Children and adolescents younger than 18 years residing in these states were included if they had 12 months or longer of enrollment in a participating health care plan. Analyses were conducted from March 12, 2021, to January 7, 2022. Exposures: The pediatric Complex Chronic Condition Classification System, Pediatric Medical Complexity Algorithm, and Children With Disabilities Algorithm were applied to 3 years of data to identify children with complex and disabling conditions, first in their original form and then using more conservative criteria that required multiple health care claims or involvement of 3 or more body systems. Main Outcomes and Measures: Primary outcomes, examined over 2 years, included in-hospital mortality and a composite measure of health care services, including specialized therapies, specialized medical equipment, and inpatient care. Outcomes were modeled using logistic regression. Model performance was evaluated using C statistics, sensitivity, and specificity. Results: Of 1â¯936â¯957 children, 48.4% were female, 87.8% resided in urban core areas, and 45.1% had government-sponsored insurance as their only primary payer. Depending on the algorithm and coding criteria applied, 0.67% to 11.44% were identified as CMC. All 3 algorithms had adequate discriminative ability, sensitivity, and specificity to predict in-hospital mortality and composite health care services (C statistic = 0.76 [95% CI, 0.73-0.80] to 0.81 [95% CI, 0.78-0.84] for mortality and 0.77 [95% CI, 0.76-0.77] to 0.80 [95% CI, 0.79-0.80] for composite health care services). Across algorithms, CMC had significantly greater odds of mortality (adjusted odds ratio [aOR], 9.97; 95% CI, 7.70-12.89; to aOR, 69.35; 95% CI, 52.52-91.57) and composite health care services (aOR, 4.59; 95% CI, 4.44-4.73; to aOR, 18.87; 95% CI, 17.87-19.93) than children not identified as CMC. Conclusions and Relevance: In this study, open-source algorithms identified different cohorts of CMC in terms of prevalence and magnitude of risk, but all predicted increased health care utilization and in-hospital mortality. These results can inform research, programs, and policies for CMC.
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Aceitação pelo Paciente de Cuidados de Saúde , Adolescente , Criança , Doença Crônica , Feminino , Mortalidade Hospitalar , Humanos , Masculino , Prevalência , Estudos RetrospectivosRESUMO
CONTEXT: Rates of obesity and other childhood chronic conditions have increased over recent decades. Patterns of how conditions change over time have not been widely examined. OBJECTIVE: To evaluate change in prevalence of obesity and other chronic conditions in US children, including incidence, remission, and prevalence. DESIGN, SETTING, AND PARTICIPANTS: Prospective study using the National Longitudinal Survey of Youth-Child Cohort (1988-2006) of 3 nationally representative cohorts of children. Children were aged 2 through 8 years at the beginning of each study period, and cohorts were followed up for 6 years, from 1988 to 1994 (cohort 1, n = 2337), 1994 to 2000 (cohort 2, n = 1759), and 2000 to 2006 (n = 905). MAIN OUTCOME MEASURES: Parent report of a child having a health condition that limited activities or schooling or required medicine, special equipment, or specialized health services and that lasted at least 12 months. Obesity was defined as a body mass index at or above the 95th percentile for age. Chronic conditions were grouped into 4 categories: obesity, asthma, other physical conditions, and behavior/learning problems. RESULTS: The end-study prevalence of any chronic health condition was 12.8% (95% confidence interval [CI], 11.2%-14.5%) for cohort 1 in 1994, 25.1% (95% CI, 22.7%-27.6%) for cohort 2 in 2000, and 26.6% (95% CI, 23.5%-29.9%) for cohort 3 in 2006. There was substantial turnover in chronic conditions: 7.4% (95% CI, 6.5%-8.3%) of participants in all cohorts had a chronic condition at the beginning of the study that persisted to the end, 9.3% (95% CI, 8.3%-10.3%) reported conditions at the beginning that resolved within 6 years, and 13.4% (95% CI, 12.3%-14.6%) had new conditions that arose during the 6-year study period. The prevalence of having a chronic condition during any part of the 6-year study period was highest for cohort 3 (51.5%; 95% CI, 47.3%-55.0%), and there were higher rates among male (adjusted odds ratio [AOR], 1.24; 95% CI, 1.07-1.42), Hispanic (AOR, 1.36; 95% CI, 1.11-1.67), and black (AOR, 1.60; 95% CI, 1.35-1.90) youth. CONCLUSIONS: Prevalence of chronic conditions among children and youth increased from 1988 to 2006. However, presence of these conditions was dynamic over each 6-year cohort.
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Doença Crônica/epidemiologia , Obesidade/epidemiologia , Adolescente , Adulto , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Inquéritos Epidemiológicos , Humanos , Incidência , Lactente , Masculino , Prevalência , Estados Unidos/epidemiologia , Adulto JovemRESUMO
OBJECTIVE: Timely identification of mental health needs and linkage to services is critical to provide comprehensive care for children with autism spectrum disorder (ASD). Pediatric primary care is well-positioned to facilitate this process through integrated care approaches. As a first step toward mental health integration, this study applied the Exploration, Preparation, Implementation, and Sustainment framework to characterize determinants of implementing integrated care practices for ASD. METHODS: Sixty pediatric primary care providers and leaders from 3 organizations completed focus groups and surveys about identification of mental health needs in children with ASD and access to mental health services. Findings were integrated to examine convergence (ie, do the 2 methods confirm or find similar results) and expansion (ie, do the 2 methods provide insights beyond either method alone). RESULTS: Results converged regarding 3 primary influences to integrated care practices for ASD: 1) limited specialized mental health referral options for ASD, 2) unique structural characteristics of the mental health system act as barriers to accessing care, and 3) caregivers differ in the degree to which they understand co-occurring mental health conditions and pursue recommended services. Qualitative results provided expansion by highlighting unique implementation considerations (eg, alignment with health care delivery priorities and values) based on primary care characteristics. CONCLUSIONS: Findings confirm need for a tailored approach for linking children with ASD to appropriate mental health treatment. Results yield insight into the needs for organizational capacity to support integrated care and provide direction toward adapting an integrated mental health care model for children with ASD.
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Transtorno do Espectro Autista , Transtorno Autístico , Serviços de Saúde Mental , Transtorno do Espectro Autista/terapia , Criança , Humanos , Saúde Mental , Atenção Primária à SaúdeRESUMO
CONTEXT: Recommendations conflict regarding universal application of formal screening instruments in primary care (PC) and PC-like settings for autism spectrum disorder (ASD). OBJECTIVES: We systematically reviewed evidence for universal screening of children for ASD in PC. DATA SOURCES: We searched Medline, PsychInfo, Educational Resources Informational Clearinghouse, and Cumulative Index of Nursing and Allied Health Literature. STUDY SELECTION: We included studies in which researchers report psychometric properties of screening tools in unselected populations across PC and PC-like settings. DATA EXTRACTION: At least 2 authors reviewed each study, extracted data, checked accuracy, and assigned quality ratings using predefined criteria. RESULTS: We found evidence for moderate to high positive predictive values for ASD screening tools to identify children aged 16 to 40 months and 1 study for ≥48 months in PC and PC-like settings. Limited evidence evaluating sensitivity, specificity, and negative predictive value of instruments was available. No studies directly evaluated the impact of screening on treatment or harm. LIMITATIONS: Potential limitations include publication bias, selective reporting within studies, and a constrained search. CONCLUSIONS: ASD screening tools can be used to accurately identify percentages of unselected populations of young children for ASD in PC and PC-like settings. The scope of challenges associated with establishing direct linkage suggests that clinical and policy groups will likely continue to guide screening practices. ASD is a common neurodevelopmental disorder associated with significant life span costs.1,2 Growing evidence supports functional gains and improved outcomes for young children receiving intensive intervention, so early identification on a population level is a pressing public health challenge.3,4.
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Transtorno do Espectro Autista/diagnóstico , Programas de Rastreamento/métodos , Atenção Primária à Saúde , Pré-Escolar , Humanos , LactenteRESUMO
OBJECTIVE: To identify opportunities to improve care value for children with disabilities (CWD), we examined CWD prevalence within a commercially insured population and compared outpatient care quality and annual health plan spending levels for CWD relative to children with complex medical conditions without disabilities; children with chronic conditions that are not complex; and children without disabling, complex, or chronic conditions. METHODS: This cross-sectional study comprised 1,118,081 person-years of Blue Cross Blue Shield Massachusetts data for beneficiaries aged 1 to 19years old during 2008 to 2012. We combined the newly developed and validated Children with Disabilities Algorithm with the Pediatric Medical Complexity Algorithm to identify CWD and non-CWD subgroups. We used 14 validated or National Quality Forum-endorsed measures to assess outpatient care quality and paid claims to examine annual plan spending levels and components. RESULTS: CWD constituted 4.5% of all enrollees. Care quality for CWD was between 11% and 59% for 8 of 14 quality measures and >80% for the 6 remaining measures and was generally comparable to that for non-CWD subgroups. Annual plan spending among CWD was a median and mean 23% and 53% higher than that for children with complex medical conditions without disabilities, respectively; CWD mean and median values were higher than for all other groups as well. CONCLUSIONS: CWD were prevalent in our commercially insured population. CWD experienced suboptimal levels of care, but those levels were comparable to non-CWD groups. Improving the care value for CWD involves a deeper understanding of what higher spending delivers and additional aspects of care quality.
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Assistência Ambulatorial/normas , Serviços de Saúde da Criança/normas , Crianças com Deficiência , Gastos em Saúde , Seguro Saúde , Qualidade da Assistência à Saúde , Adolescente , Assistência Ambulatorial/economia , Estudos de Casos e Controles , Criança , Serviços de Saúde da Criança/economia , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pediatria , Adulto JovemRESUMO
Attention-deficit/hyperactivity disorder (ADHD) is one of the most common chronic conditions of childhood. Although evidence-based treatments for ADHD, including stimulant medication and behavior modification, have long been established, and guidelines for care of ADHD in primary care settings have been developed, adherence to long-term therapy is poor among youth with ADHD. This article proposes use of the Chronic Care Model for Child Health, the purpose of which is to develop informed, activated patients who will interact with a prepared, proactive health care team. Six "pillars" make up the model: decision support, delivery system design, clinical information systems, family and self-management support, community resources and policies, and health care organizations. Each of these is discussed, and an individual example is described. Adopting the Chronic Care Model for Child Health has the potential to improve the quality of care for ADHD.
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Transtorno do Deficit de Atenção com Hiperatividade , Assistência de Longa Duração/organização & administração , Modelos Organizacionais , Equipe de Assistência ao Paciente/organização & administração , Cooperação do Paciente/psicologia , Atenção Primária à Saúde/organização & administração , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Criança , Psiquiatria Infantil/organização & administração , Doença Crônica , Participação da Comunidade , Continuidade da Assistência ao Paciente , Sistemas de Apoio a Decisões Clínicas , Medicina Baseada em Evidências , Feminino , Humanos , Modelos de Enfermagem , Guias de Prática Clínica como Assunto , Enfermagem Psiquiátrica/organização & administração , Psicologia da Criança , Encaminhamento e Consulta , Apoio Social , Gestão da Qualidade Total/organização & administraçãoRESUMO
BACKGROUND: The Massachusetts Child Psychiatry Access Project (MCPAP) provides telephone support from mental health specialists to primary care providers (PCPs). Understanding PCPs' use may inform implementation of similar programs. We sought to examine PCPs' decision-making process to use or not use MCPAP when encountering mental health problems. METHODS: We analyzed data regarding calls from PCPs to MCPAP from October 1, 2010, to July 31, 2011, and interviewed 14 PCPs with frequent use (≥7 calls) and infrequent use (≤4 calls). PCPs were asked about recent patients with mental health problems, and they were asked to describe reasons for calling or not calling MCPAP. Frequent callers were asked what sustained use; infrequent callers were asked about alternative management strategies. Comparisons were made between these groups in qualitative analysis. RESULTS: PCPs (n = 993) made 6526 calls (mean = 6.6; median = 3). Factors influencing calling included: MCPAP's guidance is timely and tailored to individual scope of practice; MCPAP's ability to arrange therapy referrals exceeds PCPs' ability; providing a plan at point of care relieves anxious families; and MCPAP's assistance helps accommodate families' preference to keep mental health in primary care. Some infrequent callers had gained skills through MCPAP before 2010 and now called only for complex cases. Other reasons for infrequent calling: PCPs have other consultation sources, have fear of being asked to manage more than they are comfortable, or have misperceptions of MCPAP's offerings. CONCLUSIONS: MCPAP enhanced PCPs' ability to deliver mental health care consistent with families' preferences. PCPs applied knowledge gained from calls to subsequent patients. Promoting MCPAP components through outreach and tailoring guidance to PCPs' scope of practice may entice greater use.
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Psiquiatria Infantil , Pediatras , Médicos de Família , Encaminhamento e Consulta , Telefone , Atitude do Pessoal de Saúde , Serviços Comunitários de Saúde Mental , Humanos , Médicos de Atenção Primária , Pesquisa QualitativaRESUMO
We examined barriers and facilitators to expanding primary care's capacity to manage conditions associated with autism spectrum disorder (ASD). We conducted semi-structured interviews with specialists, primary care providers (PCPs), primary care staff, and parents of children with ASD, discussing health/behavior problems encountered, co-management, and patient/family experience. Participants endorsed primary care as the right place for ASD-associated conditions. Specialists advising PCPs, in lieu of referrals, efficiently uses their expertise. PCPs' ability to manage ASD-associated conditions hinged on how behavioral aspects of ASD affected care delivery. Practices lacked ASD-specific policies but made individual-level accommodations and broader improvements benefitting children with ASD. Enhancing access to specialty expertise, particularly around ASD-associated behaviors, and building on current quality improvements appear important to expanding primary care.
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Transtorno do Deficit de Atenção com Hiperatividade/terapia , Transtorno do Espectro Autista/terapia , Atenção Primária à Saúde , Transtorno do Deficit de Atenção com Hiperatividade/complicações , Transtorno do Espectro Autista/complicações , Criança , Atenção à Saúde , Feminino , Pessoal de Saúde , Humanos , Masculino , Pais , Pesquisa Qualitativa , Melhoria de Qualidade , EspecializaçãoRESUMO
IMPORTANCE: Approximately 4000 U.S. children undergo tracheostomy yearly [1], and these surgeries often result in hospital re-admissions that have definite cost and caregiver burdens due to complications that are avoidable with proper training and support. OBJECTIVE: To assess the impact of a Family-Centered Care Coordination (FCCC) program on the quality of care received by children undergoing tracheostomy and their caregivers. DESIGN: Caregivers of children undergoing tracheostomies from January 2012 to January 2013 and then a different set of caregivers of children undergoing tracheostomies from January 2015 to January 2016 completed both the Pediatric Tracheostomy Health Status Instrument (PTHSI) 1 month after discharge and the Medical Complications Associated with Pediatric Tracheostomy (MCAT) questionnaire 6 months after initial tracheostomy. To assess complication rates, these same sets of caregivers were asked to complete the MCAT and only those who provided complete medical data for all 6 months were included for comparative analysis. SETTING: The PTHSI and MCAT were administered at Massachusetts Eye and Ear in a hospital setting. PARTICIPANTS: Ten caregivers of children undergoing tracheostomies completed the PTHSI before FCCC program implementation and12 caregivers then completed the PTHSI after FCCC implementation. For each of the 2 groups, 5 caregivers provided complete data on the MCAT questionnaires. EXPOSURES: FCCC is a collection of programs, policies, and tools designed to ensure safe transition home for children undergoing tracheostomies, reduce re-admission rates, and minimize "caregiver burden". MAIN OUTCOMES AND MEASURES: The PTHSI is a validated caregiver quality of life instrument that was supplemented by the MCAT which records post-discharge medical issues following tracheostomy that relate specifically to the tracheotomy placement. RESULTS: The time to first follow-up appointment decreased from 6.4 weeks (SD = 1.52) to 6 days (SD = 0.18) with FCCC implementation. The total MCAT scores decreased from 15.2 (SD = 1.1) to 1.3 (SD = 1.3) (Wilcoxon sum rank test: P < 0.016) whereas neither PTHSI scores (P = 0.32) nor the specific caregiver burden domain (P = 0.18) demonstrated a significant change. CONCLUSIONS: and Relevance: By reducing the time to first follow-up after tracheostomy and by optimizing caregiver tracheostomy tube care and teaching, children's quality of care and caregiver burden can be significantly improved.
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Cuidadores/educação , Enfermagem Familiar/métodos , Qualidade de Vida , Traqueostomia/métodos , Adaptação Psicológica , Cuidadores/psicologia , Criança , Pré-Escolar , Feminino , Nível de Saúde , Humanos , Masculino , Pesquisa Qualitativa , Qualidade da Assistência à Saúde , Inquéritos e Questionários , Traqueostomia/efeitos adversos , Traqueostomia/educaçãoRESUMO
OBJECTIVE: The quality of primary care delivered to Medicaid-insured children with disabilities (CWD) is unknown. We used the newly validated CWD algorithm (CWDA) to examine CWD prevalence among Medicaid enrollees 1 to 18 years old, primary care quality for CWD, and differences in primary care quality for CWD and non-CWD. METHODS: Cross-sectional study using 2008 Medicaid Analytic eXtract claims data from 9 states, including children with at least 11 months of enrollment (N = 2,671,922 enrollees). We utilized CWDA to identify CWD and applied 12 validated or endorsed pediatric quality measures to assess preventive/screening, acute, and chronic disease care quality. We compared quality for CWD and non-CWD unmatched and matched on age, sex, and number of nondisabling chronic conditions and outpatient encounters. RESULTS: CWDA identified 5.3% (n = 141,384) of our study population as CWD. Care quality levels for CWD were below 50% on 8 of 12 quality measures (eg, adolescent well visits [44.9%], alcohol/drug treatment engagement [24.9%]). CWD care quality was significantly better than the general population of non-CWD by +0.9% to +15.6% on 9 measures, but significantly worse for 2 measures, chlamydia screening (-3.4%) and no emergency department visits for asthma (-5.0%; all P < .01 to .001). Differences in care quality between CWD and non-CWD were generally smaller or changed direction when CWD were compared to a general population or matched group of non-CWD. CONCLUSIONS: One in 20 Medicaid-insured children is CWD, and the quality of primary care delivered to CWD is suboptimal. Areas needing improvement include preventive/screening, acute care, and chronic disease management.
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Serviços de Saúde da Criança/normas , Crianças com Deficiência , Pediatria/normas , Atenção Primária à Saúde/normas , Qualidade da Assistência à Saúde , Adolescente , Arizona , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Indiana , Lactente , Kansas , Kentucky , Masculino , Medicaid , Missouri , New Jersey , New Mexico , Garantia da Qualidade dos Cuidados de Saúde , Estados Unidos , Virginia , WisconsinRESUMO
OBJECTIVE: To examine primary care pediatricians' (PCPs) beliefs about whether the family-centered medical home (FCMH) should be in primary or subspecialty care for children with different degrees of complexity; and to examine practice characteristics associated with these beliefs. METHODS: Data from the American Academy of Pediatrics Periodic Survey (PS 79) conducted in 2012 were analyzed. Outcomes were agreement/strong agreement that 1) primary care should be the FCMH locus for most children with special health care needs (CSHCN) and 2) subspecialty care is the best FCMH locus for children with rare or complex conditions. In multivariate models, we tested associations between outcomes and practice barriers (eg, work culture, time, cost) and facilitators (eg, having a care coordinator) to FCMH implementation. RESULTS: Among 572 PCPs, 65% agreed/strongly agreed primary care is the best FCMH setting for most CSHCN, and 43% agreed/strongly agreed subspecialty care is the best setting for children with complexity. Cost and time as barriers to FCMH implementation were oppositely associated with the belief that primary care was best for most CSHCN (cost: adjusted odds ratio [AOR] 2.31, 1.36-3.90; time: AOR 0.48, 0.29-0.81). Lack of skills to communicate and coordinate care was associated with the belief that specialty care was the best FCMH for children with complexity (AOR 1.99, 1.05-3.79). CONCLUSIONS: A substantial minority endorsed specialty care as the best FCMH locus for children with medical complexity. Several barriers were associated with believing primary care to be the best FCMH for most CSHCN. Addressing medical complexity in FCMH implementation may enhance perceived value by pediatricians.
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Atitude do Pessoal de Saúde , Crianças com Deficiência , Assistência Centrada no Paciente/organização & administração , Pediatras , Médicos de Atenção Primária , Atenção Primária à Saúde/organização & administração , Atenção Terciária à Saúde/organização & administração , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: Since 2005, after a pilot program, the Massachusetts Child Psychiatry Access Project (MCPAP) has provided point-of-care psychiatry expertise and referral assistance by telephone to primary care providers. We examined its adoption and use and the practice characteristics associated with different adoption timelines and use patterns. METHODS: We merged data on calls to MCPAP in 2005 to 2011 with practice data (enrollment year, panel size, regional team assignment). We categorized practices' days from enrollment to first call (adoption) (0-100, 101-365, > 365 days) and quartile of call frequency (use) (annual highest, middle, and lowest quartiles of number of calls per 1000 empanelled patients). We determined associations between adoption and use and practice characteristics using multivariate models. RESULTS: Among 285 practices, adoption and use varied: 55% called 0 to 100 days from enrollment and 16% called >365 days from enrollment. Practices in the highest quartile of use made a mean 15.5 calls/year per 1000 patients, whereas the lowest quartile made 0.4 calls/year per 1000 patients. Adoption within 100 days was associated with enrollment during or after 2007 (odds ratio [OR] 4.09, 95% confidence interval [CI] 2.23-7.49) and assignment to the team at the pilot site (OR 4.42, 95% CI 2.16-9.04 for central Massachusetts). Highest-quartile use was associated with team assignment (OR 3.58, 95% CI 1.86-6.87 for central Massachusetts) and panel size (OR 0.10, 95% CI 0.03-0.31 for ≥ 10,000 vs < 2000 patients). CONCLUSIONS: Adoption and use of MCPAP varied widely. Timing of enrollment, assignment to the team from the program's pilot site, and panel size were associated with patterns of adoption and use. Findings may help other programs design effective implementation strategies.
Assuntos
Serviços de Saúde da Criança/organização & administração , Serviços de Saúde da Criança/estatística & dados numéricos , Serviços de Saúde Mental/organização & administração , Serviços de Saúde Mental/estatística & dados numéricos , Sistemas Automatizados de Assistência Junto ao Leito , Criança , Psiquiatria Infantil , Estudos Transversais , Acessibilidade aos Serviços de Saúde/organização & administração , Humanos , Massachusetts , Transtornos Mentais/terapia , Atenção Primária à SaúdeRESUMO
OBJECTIVES: To explore how care coordination changes conceptually and practically in primary care practices when implementing the medical home and to identify reasons for different types of changes. METHODS: Six years after a 2003-2004 national learning collaborative to implement the medical home model for children with special health care needs, we examined care coordination in 12 pediatric practices with the highest postintervention Medical Home Index scores, indicating high level of adoption of the model. Data included interviews of 48 clinicians, care coordinators, and parents and medical record reviews of 60 patients with special health care needs receiving care in these practices. RESULTS: Initially, care coordination activities were prompted by patients' acute problems, and over time activities, tools, and policies were implemented to avert many such problems and expand the scope of services offered to patients. Example activities were making previsit calls with families, writing care plans, developing relationships with community agencies, and tracking referrals. Although some activities were common across practices, the persons involved and efforts toward different activities varied with practice context. Drivers included motivation and creativity of medical home teams, organizational changes, funding to expand care coordinator positions, protected time for such activities, and adoption of electronic record systems. CONCLUSIONS: In high-performing medical homes, care coordination activities changed from being mostly reactive to patients' episodic needs to being more systematically proactive and comprehensive. This shift was promoted by factors external and internal to the practice. Ensuring these factors in medical home implementation may accelerate adoption of proactive care coordination activities.
Assuntos
Serviços de Saúde da Criança/organização & administração , Assistência Centrada no Paciente/organização & administração , Criança , Humanos , Estudos Retrospectivos , Fatores de TempoRESUMO
OBJECTIVE: To compare the mental health care US children receive from primary care providers (PCPs) and other mental health care providers. METHODS: Using nationally representative data from the Medical Expenditure Panel Survey (MEPS) from 2008 to 2011, we determined whether children and youth aged 2 to 21 years with outpatient visits for mental health problems in the past year saw PCPs, psychiatrists, and/or psychologists/social workers for these conditions. We compared the proportion of children prescribed psychotropic medications by provider type. Using logistic regression, we examined associations of provider type seen and medication prescribing with race/ethnicity, household income, insurance status, geographical area, and language at home. RESULTS: One-third (34.8%) of children receiving outpatient care for mental health conditions saw PCPs only, 26.2% saw psychiatrists only, and 15.2% saw psychologists/social workers only. Nearly a quarter (23.8%) of children saw multiple providers. A greater proportion of children with attention-deficit/hyperactivity disorder (ADHD) versus children with anxiety/mood disorders saw a PCP only (41.8% vs 17.2%). PCPs prescribed medications to a higher percentage of children than did psychiatrists. Children seeing a PCP for ADHD were more likely to receive stimulants or α-agonists than children with ADHD seeing psychiatrists (73.7% vs 61.4%). We found only limited associations of sociodemographic characteristics with provider type or medication use. CONCLUSIONS: PCPs appear to be sole physician managers for care of 4 in 10 US children with ADHD, and one-third with mental health conditions overall. Efforts supporting mental health in primary care will reach a substantial portion of children receiving mental health services.