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1.
Pediatrics ; 153(6)2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38804066

RESUMO

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.


Assuntos
Tomada de Decisões , Deficiências do Desenvolvimento , Deficiência Intelectual , Transição para Assistência do Adulto , Humanos , Deficiências do Desenvolvimento/terapia , Adolescente , Deficiência Intelectual/terapia , Deficiência Intelectual/psicologia , Criança , Tutores Legais
2.
Pediatrics ; 153(Suppl 1)2024 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-38165241

RESUMO

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity quality improvement initiative, co-led with family colleagues, illuminates a critical real-world view of systems change to address unintended bias and demystify the medical model of care. We share candid themes in which families describe the need for systems to counteract widespread misconceptions and bias to achieve meaningful system change. We held family-designed, family-led focus groups (N = 127 across 27 groups) within 10 diverse state teams. Families were asked about CMC quality of life and family wellbeing. We transcribed and coded the responses to uncover salient themes. We uncovered 2 major themes from families with direct applicability to systems of care: "What's Missing - Human Dignity" and "What Families Really Need and Recommend in Care." Families shared that valuing each child and creating opportunities for the child and family to enjoy their lives were most important in addressing human dignity in systems of care. They recommended centering the whole child, building relationships of trust and communication, and valuing family-to-family supports to transform the system of care aligned to humanism in care. Families express an urgency for systems to uphold dignity, valuing their child as a whole human being whose quality of life holds meaning and joy, not just as a diagnosis. The highly untenable cost of navigating dehumanizing systems of care reduces quality of life and wellbeing and must be transformed.


Assuntos
Humanismo , Qualidade de Vida , Criança , Feminino , Gravidez , Recém-Nascido , Humanos , Comunicação , Consenso , Assistência Perinatal
3.
Pediatrics ; 153(Suppl 1)2024 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-38165239

RESUMO

The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) was designed with a foundational commitment to partnership with family leaders to codesign and improve systems of care and supports for CMC and their families - this fundamental commitment was essential to the CMC CoIIN's measurement strategy. In this paper, we examine key learnings from partnering with family leaders from interdisciplinary state teams in the CMC CoIIN to identify and define quantitative quality improvement measures to improve care and support for CMC and their families, including quality of life, well-being, and flourishing; unmet health needs; and support systems such as medical home, patient and family engagement, and shared plans of care. Codesigning the CMC CoIIN measurement strategy with family leaders greatly enhanced our measurement approach and provided numerous unique learning opportunities for the CMC CoIIN's project team and state teams.


Assuntos
Aprendizagem , Qualidade de Vida , Criança , Humanos , Assistência Centrada no Paciente , Melhoria de Qualidade
4.
Hosp Pediatr ; 13(12): e371-e376, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-37969006

RESUMO

OBJECTIVES: This study aimed to identify coping factors for caregivers of children with medical complexity (CMC) to manage the stressors and experience associated with their child's hospitalization. METHODS: We conducted semistructured interviews with CMC caregivers over a video-conferencing platform to examine factors that they perceive impact their coping while their children are hospitalized. Interviews were audio-recorded, transcribed, and imported into a qualitative coding software (MAXQDA). Using a modified grounded theory approach, we assigned process and in vivo codes to the transcripts and conducted interpretive analysis to identify themes. Once we reached thematic saturation, we finalized themes by discussing them to achieve group consensus and processed themes through triangulation with our institution's pediatric family advisory council. RESULTS: We interviewed 14 caregivers (11 mothers and 3 fathers) and identified 3 major themes. The factors that contributed to CMC caregiver coping with their child's hospitalizations included caregivers: feeling that they are prioritizing their child's needs over their own, feeling trust in their child's interdisciplinary healthcare team, and feeling their self-care practices are well adjusted to the hospital setting. CONCLUSIONS: Our study found 3 coping factors for caregivers of CMC during their child's hospitalization. Development and testing of interventions that enhance these coping practices may better support CMC caregivers during their child's hospitalizations. Potential interventions could include developing structured processes to establish caregiver involvement in their child's hospital care and helping caregivers modify their existing coping mechanisms to the hospital setting.


Assuntos
Cuidadores , Hospitalização , Feminino , Criança , Humanos , Mães , Adaptação Psicológica , Hospitais
5.
Acad Pediatr ; 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-37925071

RESUMO

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.

6.
Hosp Pediatr ; 13(9): 849-856, 2023 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-37584151

RESUMO

BACKGROUND AND OBJECTIVES: Children and Youth with Special Health Care Needs (CYSHCN) have differing risk factors and injury characteristics compared with peers without special health care needs (SHCN). We examined the association between SHCN status and complications, mortality, and length of stay (LOS) after trauma hospitalization. METHODS: We conducted a cross-sectional study using 2018 data from the National Trauma Data Bank for patients aged 1 to 18 years (n = 108 062). We examined the following hospital outcomes: any complication reported, unplanned admission to the ICU, in-hospital mortality, and hospital and ICU LOS. Multivariate regression models estimated the effect of SHCN status on hospital outcomes after controlling for patient demographics, injury severity score, and Glasgow Coma Score. Subanalyses examined outcomes by age, SHCN, and injury severity score. RESULTS: CYSHCN encounters had a greater adjusted relative risk (ARR) of any hospital complications (ARR = 2.980) and unplanned admission to the ICU (ARR = 1.996) than encounters that did not report a SHCN (P < .001). CYSHCN had longer hospital (incidence rate ratio = 1.119) and ICU LOS (incidence rate ratio = 1.319, both P < .001). There were no statistically significant in-hospital mortality differences between CYSHCN and those without. Lower severity trauma was associated with a greater ARR of hospital complications for CYSHCN encounters versus non-CYSHCN encounters. CONCLUSIONS: CYSHCN, particularly those with lower-acuity injuries, are at greater risk for developing complications and requiring more care after trauma hospitalization. Future studies may examine mechanisms of hospital complications for traumatic injuries among CYSHCN to develop prevention and risk-minimization strategies.


Assuntos
Hospitalização , Unidades de Terapia Intensiva , Adolescente , Humanos , Criança , Estudos Transversais , Tempo de Internação , Fatores de Risco , Estudos Retrospectivos , Atenção à Saúde
7.
Acad Pediatr ; 22(8): 1489-1498, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36002069

RESUMO

OBJECTIVE: Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level. METHODS: We performed a secondary analysis of the 2016-2019 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children with no special health care needs (non-CSHCN), children with special health care needs (CSHCN), CSHCN with significant disabilities (CSHCN-SD), and children with medical complexity (CMC). Outcomes included survey items assessing 1) caregiver emotional well-being, 2) family functioning, and 3) economic adversity. We conducted multivariable logistic regression analyses to examine associations between child disability and medical complexity status with study outcomes. RESULTS: Among 131,774 survey responses, CSHCN-SD (weighted n = 4.2 million) and CMC (n =1.1 million) disproportionately reported adverse outcomes for every measure of well-being. Notably, caregivers of CSHCN-SD and CMC were more likely to report frequently feeling bothered (aOR 5.0 and 6.3, respectively) and angry (aOR 3.0 and 3.1) with their child than non-CSHCN caregivers. Families of CSHCN-SD and CMC had 40% lower odds of endorsing all aspects of family resilience and more likely to report three or more adverse childhood experiences (aOR 3.3 and 3.7) than non-CSHCN families. CSHCN-SD and CMC families were also more likely to experience difficulty covering basics (aOR, 2.6 and 3.3) and report caregivers changing jobs due to their child's care (aOR, 3.1 and 5.0). CONCLUSIONS: Development and testing of interventions specifically targeting the well-being of CSHCN-SD and CMC families and caregivers is needed.


Assuntos
Crianças com Deficiência , Resiliência Psicológica , Criança , Humanos , Estados Unidos , Cuidadores , Saúde da Família , Atenção à Saúde , Necessidades e Demandas de Serviços de Saúde , Acessibilidade aos Serviços de Saúde
8.
Pediatrics ; 149(Suppl 7)2022 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-35642871

RESUMO

Access to services for children and youth with special health care needs (CYSHCN) have typically emphasized coverage, service, timeliness, and capability. Yet families of CYSHCN continue to describe a fragmented health care system with significant unmet needs. For many years, the concept of access to services has focused on the services themselves, rather than starting with the needs of CYSHCN and their families. Meeting these needs should be grounded in health equity, address systemic racism and ableism, and emphasize the life course and journey of those with such needs and their families. In this paper, we start with the simple concept of asking that care is available for CYSHCN regardless of when, where, and how they need it. Access to services is built on relationships instead of a series of transactions. Opportunities for innovation include creating a single point of service entry; determining services based on need instead of diagnosis; and emphasizing service continuity, transition, and a place-based approach. The innovations reimagine access throughout the life course, centering care around a proactive, human-centered system that addresses health and all of its determinants. The landscape of antipoverty investments, cultural humility, workforce changes, technology, and human-centered thought in design have the potential to further transform the conceptual framework to improve access to services for CYSHCN and their families.


Assuntos
Crianças com Deficiência , Adolescente , Criança , Necessidades e Demandas de Serviços de Saúde , Humanos
9.
Acad Pediatr ; 22(2S): S41-S46, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35248247

RESUMO

OBJECTIVE: Children and youth with special health care needs (CYSHCN) have a range of medical, educational, and support service needs to achieve optimal health and wellness. Principles of care for CYSHCN have been well described, but the literature is lacking particularly on implementation and integration of care across different settings and systems. The objective of this manuscript is to define a research agenda for principles of care for CYSHCN. METHODS: Literature review examined principles of care for CYSHCN. Existing research gaps and priorities for principles of care were drawn from the literature review, a recently developed national research agenda for CYSHCN, and stakeholder consensus. RESULTS: Specific implementation areas of inquiry include family partner roles within and across systems; life course approach for CYSHCN; roles and training of interdisciplinary team members; and implementation, spread, and sustainability studies. Proposed methods include implementation science-based and comparative effectiveness research. A common set of metrics including health care utilization, clinical outcomes, and family and provider needs should be considered to evaluate implementation of principles of care. CONCLUSIONS: Implementation science and comparative effectiveness methods are needed to further understanding about how to adopt and spread principles of care for CYSHCN. The evolving demographics of CYSHCN add relevance and urgency for research findings.


Assuntos
Serviços de Saúde do Adolescente , Serviços de Saúde da Criança , Atenção à Saúde , Adolescente , Criança , Humanos
10.
Acad Pediatr ; 22(2S): S7-S13, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35248248

RESUMO

Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.


Assuntos
Transferência de Pacientes , Transição para Assistência do Adulto , Adolescente , Adulto , Criança , Atenção à Saúde , Humanos , Avaliação de Resultados em Cuidados de Saúde
11.
J Trauma Acute Care Surg ; 93(3): 299-306, 2022 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-35293370

RESUMO

BACKGROUND: Children and youth with special health care needs (CYSHCN) have or are at an increased risk for a chronic condition necessitating medical and related services beyond what children usually require. While evidence suggests that CYSHCN are at an increased risk of injury, little is known about this population within the trauma system. This study describes CYSHCN within the pediatric trauma system and examines patterns of injury risk (i.e., intent, place of injury, trauma type, and mechanism of injury) based on special health care need (SHCN) status. METHODS: For this cross-sectional study, we used data from the 2018 National Trauma Data Bank to identify pediatric encounters (1-18 years, N = 115,578) and compare demographics (sex, race/ethnicity, insurance status, and age) by CYSHCN status using χ 2 and t tests. Children and youth with special health care needs encounters were compared with non-SHCN encounters using multinomial logistic regression models, controlling for demographics. RESULTS: Overall, 16.7% pediatric encounters reported an SHCN. Children and youth with special health care needs encounters are older, and a higher proportion is publicly insured than non-SHCN encounters ( p < 0.001). Furthermore, CYSHCN encounters have a higher risk of assault (relative risk, 1.331) and self-inflicted (relative risk, 4.208) injuries relative to unintentional injury ( p < 0.001), as well as a higher relative risk of traumatic injury occurring in a private residence ( p < 0.01) than other locations such as school (relative risk, 0.894). Younger CYSHCN encounters have a higher risk of assault relative to unintentional injury when compared with non-SHCN encounters ( p < 0.01). Pediatric trauma encounters reporting mental health and alcohol/substance use disorder SHCN have a higher probability of self-inflicted and assault injuries than non-SHCN encounters ( p < 0.001). CONCLUSIONS: These findings suggest that CYSHCN have different traumatic injury patterns than their non-SHCN peers, particularly in terms of intentional and private residence injury, and deserve a special focus for traumatic injury prevention. LEVEL OF EVIDENCE: Prognostic/epidemiologic, level III.


Assuntos
Necessidades e Demandas de Serviços de Saúde , Adolescente , Criança , Doença Crônica , Estudos Transversais , Humanos
12.
Vaccine ; 40(10): 1458-1463, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-35131136

RESUMO

INTRODUCTION: Practice immunization policies may reflect how their physicians and nurses approach vaccine hesitant parents. This study utilized New York State primary care practices' websites to locate immunization policies for pediatric patients and collect practice-level data. METHODS: For this cross-sectional study, we extracted website data in February/March of 2019. We first conducted a qualitative content analysis using the policy text and developed definitions of practice policy types (i.e., formal, informal, or no policy). Two authors independently reviewed and coded the text, and employed consensus meetings and feedback from the third author to finalize the content analysis. We then examined associations between practice-level characteristics and immunization policy presence through categorical data analysis. RESULTS: Of the 254 practice websites identified, 36 referred to formal immunization policies that may include consequences (e.g., dismissal) for refusing to vaccinate or not fully vaccinating, and 64 referred to informal policy statements supporting immunization. Most (89%) policies included appeals to scientific and/or professional authority. Almost all (92%) contained language tailored to potential reasons for parents' vaccine hesitancy. Our categorical analyses indicate that majority-pediatrician practices are associated with the presence of either formal or informal immunization policies (p < 0.001). Our results also suggest regional variation in the presence of such policies across New York state, although statistical significance is not achieved. CONCLUSIONS: Vaccine hesitancy in the pediatric population has become a global concern due to infectious disease outbreaks, most recently the COVID-19 pandemic. Future studies may examine whether practice-level policies are effective in improving local immunization rates.


Assuntos
COVID-19 , Vacinas , Criança , Estudos Transversais , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Imunização , New York , Pandemias , Pais , Políticas , Atenção Primária à Saúde , SARS-CoV-2 , Vacinação
13.
Acad Pediatr ; 22(2S): S47-S53, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34808384

RESUMO

Children and youth with special health care needs (CYSHCN) use disproportionately more health care resources than non-CYSHCN, and their unique needs merit additional consideration. Spending on health care in the United States is heavily concentrated on acute illnesses through fee-for-service (FFS). Payment reform frameworks have focused on shifting away from FFS, addressing health outcomes and the experience of care while lowering costs, particularly for high resource utilizers. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children's health and life course. Spending for children's health is also considered an investment in their growth and development with long-term outcomes at stake, so research questions should focus on where and how such spending should be targeted. This paper discusses high-priority research topics in the area of health care financing for CYSHCN in the context of what is currently known and important knowledge gaps related to investment for CYSHCN. It proceeds to describe 3 potential research projects that can address these topics, following a framework informed by the priority questions identified in a previous multistakeholder research agenda development process. We focus on 3 areas: benefits, payment models, and quality measures. Specific aims and hypotheses are offered, as well as suggestions for approaches and thoughts on potential implications.


Assuntos
Serviços de Saúde da Criança , Atenção à Saúde , Adolescente , Adulto , Criança , Doença Crônica , Planos de Pagamento por Serviço Prestado , Financiamento da Assistência à Saúde , Humanos , Estados Unidos
14.
Pediatrics ; 148(2)2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34155129

RESUMO

OBJECTIVES: The mental health of parents of children with medical complexity (CMC) is poorly understood, yet it drives child and family health outcomes. For parents of CMC, compared with parents of noncomplex children with special health care needs (CSHCN) and children without special health care needs (non-CSHCN), we examined self-reported mental health, knowledge of community sources for help, and emotional support. METHODS: Using parent-reported data from the combined 2016-2017 National Survey of Children's Health, we divided the population into 3 groups: households with CMC, noncomplex CSHCN, and non-CSHCN. We compared these groups regarding the following: (1) parents' risks for poor or fair mental health and knowledge of where to go for community help and (2) parent-reported sources of emotional support. RESULTS: Of 63 955 588 parent-child dyads (weighted from a sample of 65 204), parents of CMC had greater adjusted odds of reporting poor or fair mental health compared with parents of noncomplex CSHCN (adjusted odds ratio [aOR] 2.0; 95% confidence interval [CI] 1.1-3.8) and non-CSHCN (aOR 4.6; 95% CI 2.5-8.6). Parents of CMC had greater odds of not knowing where to find community help compared with parents of noncomplex CSHCN (aOR 2.1; 95% CI 1.4-3.1) and non-CSHCN (aOR 2.9; 95% CI 2.0-4.3). However, parents of CMC were most likely to report receiving emotional support from health care providers and advocacy groups (P < .001). CONCLUSIONS: Among all parents, those with CMC were at the highest risk to report suboptimal mental health. They more often reported that they do not know where to find community help, but they did say that they receive emotional support from health care providers and advocacy groups. Future researchers should identify ways to directly support the emotional wellness of parents of CMC.


Assuntos
Saúde da Família , Saúde Mental , Pais/psicologia , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Masculino , Autorrelato , Estados Unidos
15.
Pediatrics ; 147(2)2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33414236

RESUMO

BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. METHODS: This longitudinal analysis included 6229 children born in 2009 and continuously enrolled in Medicaid through 2015 with a diagnosis of NI by age 3 in the IBM Watson Medicaid MarketScan Database. NI was defined with an existing diagnostic code set encompassing neurologic, genetic, and metabolic conditions that result in substantial functional impairments requiring subspecialty medical care. The prevalence and timing of co-occurring chronic conditions was assessed with the Agency for Healthcare Research and Quality Chronic Condition Indicator system. Mean cumulative function was used to measure age trends in multimorbidity. RESULTS: The most common type of NI was static (56.3%), with cerebral palsy (10.0%) being the most common NI diagnosis. Respiratory (86.5%) and digestive (49.4%) organ systems were most frequently affected by co-occurring chronic conditions. By ages 2, 4, and 6 years, the mean (95% confidence interval [CI]) numbers of co-occurring chronic conditions were 3.7 (95% CI 3.7-3.8), 4.6 (95% CI 4.5-4.7), and 5.1 (95% CI 5.1-5.2). An increasing percentage of children had ≥9 co-occurring chronic conditions as they aged: 5.3% by 2 years, 10.0% by 4 years, and 12.8% by 6 years. CONCLUSIONS: Children with NI enrolled in Medicaid have substantial multimorbidity that develops early in life. Increased attention to the timing and types of multimorbidity in children with NI may help optimize their preventive care and case management health services.


Assuntos
Doença Crônica/epidemiologia , Doença Crônica/tendências , Medicaid/tendências , Multimorbidade/tendências , Doenças do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso/epidemiologia , Fatores Etários , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Lactente , Recém-Nascido , Estudos Longitudinais , Masculino , Estudos Retrospectivos , Estados Unidos/epidemiologia
17.
J AAPOS ; 24(5): 291.e1-291.e6, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-33007448

RESUMO

PURPOSE: To examine the relationship between state school vision screening requirements and the likelihood that children 3-5 years of age receive vision testing. METHODS: We obtained nationally representative data from the 2016 National Survey of Children's Health on children ages 3-5 (n = 7,567) and used available sources to compile state policies that mandate childhood vision testing. We calculated the rates of parent-reported vision testing for each state and fit logistic regression models using survey-based estimation methods with nationally representative weights. Our models controlled for factors such as age, sex, race/ethnicity, and insurance coverage. Additional analyses added comorbidities that may lead to an eye care provider referral. RESULTS: Parent-reported vision testing rates by state ranged from 41% to 84%. A significant association was found between the presence of state-level vision screening requirements and parent-reported vision testing, which remained after controlling for comorbidities (aOR = 1.374; P = 0.016). Of these comorbidities, arthritis, blindness, and very low birth weight were associated with a higher rate of vision screening (all P < 0.05). CONCLUSIONS: The presence of a state-level school vision screening requirement is associated with increased parent-reported vision testing in children 3-5 years of age. This suggests that state policy may ensure timely screening for amblyopia and other sight-threatening complications.


Assuntos
Ambliopia , Seleção Visual , Criança , Pré-Escolar , Humanos , Programas de Rastreamento , Pais , Encaminhamento e Consulta
19.
BMC Pediatr ; 20(1): 168, 2020 04 17.
Artigo em Inglês | MEDLINE | ID: mdl-32303218

RESUMO

BACKGROUND: Many children and their families are affected by premature birth. Yet, little is known about their healthcare access and adverse family impact during early childhood. This study aimed to (1) examine differences in healthcare access and adverse family impact among young children by prematurity status and (2) determine associations of healthcare access with adverse family impact among young children born prematurely. METHODS: This was a secondary analysis of cross-sectional 2016 and 2017 National Survey of Children's Health data. The sample included 19,482 U.S. children ages 0-5 years including 242 very low birthweight (VLBW) and 2205 low birthweight and/or preterm (LBW/PTB) children. Prematurity status was defined by VLBW (i.e., < 1500 g at birth) and LBW/PTB (i.e., 1500-2499 g at birth and/or born at < 37 weeks with or without LBW). Healthcare access measures were adequate health insurance, access to medical home, and developmental screening receipt. Adverse family impact measures were ≥ $1000 in annual out-of-pocket medical costs, having a parent cut-back or stop work, parental aggravation, maternal health not excellent, and paternal health not excellent. The relative risk of each healthcare access and adverse family impact measure was computed by prematurity status. Propensity weighted models were fit to estimate the average treatment effect of each healthcare access measure on each adverse family impact measure among children born prematurely (i.e., VLBW or LBW/PTB). RESULTS: Bivariate analysis results showed that VLBW and/or LBW/PTB children generally fared worse than other children in terms of medical home, having a parent cut-back or stop working, parental aggravation, and paternal health. Multivariable analysis results only showed, however, that VLBW children had a significantly higher risk than other children of having a parent cut-back or stop work. Adequate health insurance and medical home were each associated with reduced adjusted relative risk of ≥$1000 in annual out-of-pocket costs, having a parent cut-back or stop work, and parental aggravation among children born prematurely. CONCLUSIONS: This study's findings demonstrate better healthcare access is associated with reduced adverse family impact among U.S. children ages 0-5 years born prematurely. Population health initiatives should target children born prematurely and their families.


Assuntos
Acessibilidade aos Serviços de Saúde , Doenças do Recém-Nascido , Doenças do Prematuro , Nascimento Prematuro , Pré-Escolar , Estudos Transversais , Atenção à Saúde , Família , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Gravidez
20.
Pediatrics ; 145(4)2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32229620

RESUMO

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) comprise only 6% of the pediatric population, account for ∼40% of pediatric health care spending, and provide an important opportunity for cost saving. Savings in this group can have an important impact on pediatric health care costs. The objective of this study was to assess the impact of a multicenter care management program on spending and use in CMC. DESIGN AND METHODS: We conducted a prospective cohort analysis of a population of 4530 CMC enrolled in a learning collaborative designed to improve care for CMC ages 0 to 21 years identified using 3M Clinical Risk Group categories 5b through 9. The primary outcome was total per-member per-year standardized spending; secondary outcomes included inpatient and emergency department (ED) spending and use. We used a 1:1 propensity score match to compare enrolled patients to eligible nonenrolled patients and statistical process control methods to analyze spending and usage rates. RESULTS: Comparison with the matched group showed a 4.6% (95% confidence interval [CI]: 1.9%-7.3%) decrease in total per-member per-year spending (P < .001), a 7.7% (95% CI: 1.2%-13.5%) decrease in inpatient spending (P = .04), and an 11.6% (95% CI: 3.9%-18.4%) decrease in ED spending (P = .04). Statistical process control analysis showed a decrease in hospitalization rate and ED visits. CONCLUSIONS: CMC enrolled in a learning collaborative showed significant decreases in total spending and a significant decrease in the number of hospitalizations and ED visits. Additional research is needed to determine more specific causal factors for the results and if these results are sustainable over time and replicable in other settings.


Assuntos
Serviço Hospitalar de Emergência/economia , Custos de Cuidados de Saúde/estatística & dados numéricos , Hospitalização/economia , Programas de Assistência Gerenciada/economia , Atenção Primária à Saúde/economia , Adolescente , Criança , Pré-Escolar , Redução de Custos , Feminino , Seguimentos , Gastos em Saúde , Humanos , Lactente , Recém-Nascido , Masculino , Estudos Prospectivos , Adulto Jovem
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