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1.
J Pediatr ; 233: 74-81.e8, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33662343

RESUMO

OBJECTIVES: To examine associations between referral concerns, screening results, and diagnostic outcomes for young children evaluated across a statewide primary care network for early screening and diagnosis of autism spectrum disorder (ASD). STUDY DESIGN: The Early Autism Evaluation Hub system was developed to increase developmental screening and improve access to timely ASD evaluations in local communities. In 2019, 858 children (ages 18-48 months; 40% diagnosed with ASD) received ASD evaluations across 12 Early Autism Evaluation Hubs. Data on primary care provider (PCP)- and caregiver-reported referral concerns, Modified Checklist for Autism in Toddlers, Revised with Follow-Up (MCHAT-R/F) and Ages and Stages Questionnaire, Third Edition (ASQ-3), and diagnostic outcome were collected. RESULTS: Among children evaluated, there was low concordance between PCP and caregiver referral concern. Although a positive MCHAT-R/F screen was associated with PCP but not caregiver-reported ASD referral concern, there was a significant linear relationship between MCHAT-R/F raw scores and both PCP and caregiver ASD referral concern. A different pattern of ASQ-3 delays was found to be associated with PCP-reported as compared with caregiver-reported ASD referral concern. Finally, PCP-reported ASD referral concern, positive MCHAT-R/F, and ASQ-3 Communication and Personal Social delays were associated with a significantly higher likelihood of subsequent ASD diagnosis. CONCLUSIONS: Understanding how community PCPs use surveillance and screening data, the extent to which PCPs and caregivers have shared understanding and engage in collaborative decision-making about evaluation referral, and how these factors relate to diagnostic outcomes has the potential to impact educational efforts for both PCPs and caregivers of young children, as well as inform the development of more efficacious early identification approaches.


Assuntos
Transtorno do Espectro Autista/diagnóstico , Programas de Rastreamento , Encaminhamento e Consulta , Cuidadores , Pré-Escolar , Humanos , Indiana , Lactente , Atenção Primária à Saúde
2.
Am J Med Genet A ; 179(8): 1476-1482, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31081992

RESUMO

The objective was to investigate the serial mediating effects of speech difficulties, patient health communication, and disease-specific worry in the relationship between neurofibromatosis (NF) symptoms (pain and skin symptoms) and total generic health-related quality of life (HRQOL) in children, adolescents, and young adults with NF Type 1 (NF1) from the patient perspective. The Speech, Communication, Worry, Pain, Skin Itch Bother, and Skin Sensations Scales from the Pediatric Quality of Life Inventory (PedsQL) NF1 Module and the PedsQL 4.0 Generic Core Scales were completed in a multi-site national study by 305 patients ages 5-25 years. A serial multiple mediator model analysis was conducted to test the hypothesized sequential mediating effects of speech difficulties, health communication, and worry as intervening variables in the association between NF1 symptoms and HRQOL. Symptoms predictive effects on total generic HRQOL were serially mediated by speech difficulties, patient health communication, and worry. In predictive analytics models utilizing hierarchical multiple regression analyses with age and gender demographic covariates, the pain, skin itch bother, and skin sensations multiple mediator models accounted for 61%, 59%, and 56% of the variance in generic HRQOL (p < .001), reflecting large effect sizes. Speech difficulties, patient health communication, and disease-specific worry explain in part the mechanism of symptoms predictive effects on total generic HRQOL in pediatric patients with NF1. Identifying NF1-specific predictors and serial mediators of total generic HRQOL in pediatric patients with NF1 from the patient perspective enables a patient-centered comprehensive care approach for children, adolescents, and young adults with NF1.


Assuntos
Ansiedade/psicologia , Comunicação em Saúde , Neurofibromatose 1/psicologia , Dor/psicologia , Prurido/psicologia , Qualidade de Vida/psicologia , Distúrbios da Fala/psicologia , Adolescente , Adulto , Ansiedade/diagnóstico , Ansiedade/fisiopatologia , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Neurofibromatose 1/diagnóstico , Neurofibromatose 1/fisiopatologia , Dor/diagnóstico , Dor/fisiopatologia , Prurido/diagnóstico , Prurido/fisiopatologia , Análise de Regressão , Índice de Gravidade de Doença , Fala/fisiologia , Distúrbios da Fala/diagnóstico , Distúrbios da Fala/fisiopatologia
3.
Qual Life Res ; 28(4): 1047-1052, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30465317

RESUMO

OBJECTIVES: The aim was to investigate pain, skin sensations symptoms and patient self-reported, and parent proxy-reported cognitive functioning as predictors of generic health-related quality of life (HRQOL) in pediatric patients with Neurofibromatosis Type 1 (NF1) from the perspectives of patients and parents. METHODS: The Pain, Skin Itch Bother, Skin Sensations, and Cognitive Functioning Scales from the PedsQL™ Neurofibromatosis Type 1 Module and the PedsQL™ Generic Core Scales were completed in a multi-site national study by 323 patients and 335 parents. Patients were 5-25 years of age. Pain and skin symptoms and cognitive functioning were tested for bivariate and multivariate linear associations with generic HRQOL. RESULTS: Pain, skin itch bother, skin sensations, and cognitive functioning were associated with decreased HRQOL in bivariate analyses (Ps < 0.001). In predictive analytics models, utilizing hierarchical multiple regression analyses controlling for demographic covariates, pain, skin itch bother, skin sensations, and cognitive functioning as a group accounted for 61 percent of the variance in patient-reported generic HRQOL (P < 0.001), reflecting a large effect size. For parent proxy-report, the predictor variables as a group accounted for 53% of the variance in generic HRQOL. CONCLUSIONS: Pain, skin symptoms, and patient self-reported and parent proxy-reported cognitive functioning are key predictors of generic HRQOL in pediatric patients with NF1. Delineating NF1-specific symptoms and cognitive functioning as high-priority predictors from the patient and parents perspective enhances a family-centered approach in clinical research, clinical trials, and clinical practice intended to improve the global generic HRQOL of pediatric patients with NF1.


Assuntos
Cognição/fisiologia , Neurofibromatose 1/complicações , Dor/fisiopatologia , Qualidade de Vida/psicologia , Pele/inervação , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Neurofibromatose 1/patologia , Adulto Jovem
4.
J Neurooncol ; 137(2): 337-347, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29273891

RESUMO

The objective of the present study was to report on the measurement properties of the Pediatric Quality of Life Inventory (PedsQL) Neurofibromatosis Type 1 Module for pediatric patients ages 5-25 from the perspectives of patients and parents. The 104-item PedsQL NF1 Module and 23-item PedsQL Generic Core Scales were completed in a multi-site national study by 323 patients and 335 parents (343 families). Patients were diagnosed with NF1 using the National Institutes of Health diagnostic criteria. In addition to a Total Scale Score, 18 unidimensional scales were derived measuring skin itch bother, skin sensations, pain, pain impact, pain management, cognitive functioning, speech, fine motor, balance, vision, perceived physical appearance, communication, worry, treatment anxiety, medicines, stomach discomfort, constipation, and diarrhea. The PedsQL NF1 Module Scales evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.98; parent proxy-report α = 0.98), and good to excellent reliability for the 18 individual scales (patient self-report α = 0.71-0.96; parent proxy-report α = 0.73-0.98). Intercorrelations with the Generic Core Scales supported construct validity. Factor analysis supported the unidimensionality of the 18 individual scales. The PedsQL NF1 Module Scales demonstrated acceptable to excellent measurement properties, and may be utilized as standardized metrics to assess NF1-specific symptoms and problems in clinical research and practice in children, adolescents, and young adults.


Assuntos
Neurofibromatose 1/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Adolescente , Adulto , Criança , Pré-Escolar , Análise Fatorial , Estudos de Viabilidade , Feminino , Humanos , Masculino , Neurofibromatose 1/diagnóstico , Pais/psicologia , Reprodutibilidade dos Testes , Autorrelato , Adulto Jovem
5.
J Neurooncol ; 132(1): 135-143, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-28078640

RESUMO

Health-related quality of life (HRQOL) is arguably one of the most important measures in evaluating effectiveness of clinical treatments. At present, there is no disease-specific outcome measure to assess the HRQOL of children, adolescents and young adults with Neurofibromatosis Type 1 (NF1). This study aimed to develop the items and support the content validity for the Pediatric Quality of Life Inventory™ (PedsQL™) NF1 Module for children, adolescents and young adults. The iterative process included multiphase qualitative methods including a literature review, survey of expert opinions, semi-structured interviews, cognitive interviews and pilot testing. Fifteen domains were derived from the qualitative methods, with content saturation achieved, resulting in 115 items. The domains include skin, pain, pain impact, pain management, cognitive functioning, speech, fine motor, balance, vision, perceived physical appearance, communication, worry, treatment, medicines and gastrointestinal symptoms. This study is limited because all participants are recruited from a single-site. Qualitative methods support the content validity for the PedsQL™ NF1 Module for children, adolescents and young adults. The PedsQL™ NF1 Module is now undergoing national multisite field testing for the psychometric validation of the instrument development.


Assuntos
Neurofibromatose 1/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Entrevista Psicológica , Masculino , Adulto Jovem
6.
Pediatr Blood Cancer ; 64(11)2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28439949

RESUMO

BACKGROUND: Respiratory failure in the pediatric hematopoietic cell transplant (HCT) recipient is the leading cause for admission to the intensive care unit and carries a high mortality rate. The objective of this study is to investigate the association of clinical risk factors with the development of respiratory failure in the pediatric allogeneic HCT recipient. PROCEDURES: This is a single-center, retrospective review of allogeneic pediatric HCT from 2008 to 2014. Multiple variables were examined. The primary outcome was respiratory failure. Percent weight gain was investigated at multiple time points. Bivariate and multivariate regression was used. RESULTS: Of the 87 allogeneic HCT recipients, 22 (25%) developed respiratory failure. Mortality for entire cohort was 13.8%. All who died were intubated prior to death. The group with respiratory failure had significantly higher percent weight gain increase at multiple time points: peak weight prior to discharge or intubation (P = 0.008), weight at discharge or intubation (P = .001), and weight at day 43 (median day for intubation) (P = 0.02). Odds ratio (OR) for respiratory failure increased with increasing percentage peak weight gain: 10% increase (3.1 [1.1, 9.0]), 15% increase (4.1 [1.5, 11.2]), and 20% (8.3 [2.4. 28.9]). Fifty percent of all patients required supplemental O2 . OR for respiratory failure in patients requiring more than 1 l supplemental O2 is 25.3 (6.5, 98.7). CONCLUSION: Percent weight gain and need for supplemental oxygen is highly associated with the development of respiratory failure in pediatric HCT recipients, representing predictors of acute respiratory failure in pediatric HCT. These data could be incorporated into an algorithm that should be developed, implemented, and validated in a prospective, multicenter fashion.


Assuntos
Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Oxigênio/administração & dosagem , Admissão do Paciente/estatística & dados numéricos , Respiração Artificial/efeitos adversos , Insuficiência Respiratória/etiologia , Aumento de Peso , Criança , Feminino , Seguimentos , Mortalidade Hospitalar , Hospitalização , Humanos , Unidades de Terapia Intensiva Pediátrica , Tempo de Internação , Masculino , Prognóstico , Estudos Retrospectivos , Fatores de Risco
7.
Educ Health (Abingdon) ; 29(3): 250-254, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-28406110

RESUMO

BACKGROUND: Limited resources are available to educate health professionals on cultural considerations and specific healthcare needs of Burmese refugees. The objective of this study was to determine the effectiveness of a module focused on cross-cultural considerations when caring for Burmese refugees. METHODS: A brief educational module using anonymously tracked pre- and post-intervention, self-administered surveys was developed and studied. The surveys measured pediatric and family medicine residents' knowledge, attitudes, and comfort in caring for Burmese refugees. Paired t-tests for continuous variables and Fisher's exact tests for categorical variables were used to test pre- and post-intervention differences. We included open-ended questions for residents to describe their experiences with the Burmese population. RESULTS: The survey was available to 173 residents. Forty-four pre- and post-intervention surveys were completed (response rate of 25%). Resident comfort in caring for Burmese increased significantly after the module (P = 0.04). Resident knowledge of population-specific cultural information increased regarding ethnic groups (P = 0.004), appropriate laboratory use (P = 0.04), and history gathering (P = 0.001). Areas of improved resident attitudes included comprehension of information from families (P = 0.03) and length of time required with interpreter (P = 0.01). Thematic evaluation of qualitative data highlighted four themes: access to interpreter and resources, verbal communication, nonverbal communication, and relationship building with cultural considerations. DISCUSSION: A brief intervention for residents has the potential to improve knowledge, attitudes, and comfort in caring for Burmese patients. Interventions focused on cultural considerations in medical care may improve cultural competency when caring for vulnerable patient populations.


Assuntos
Atitude do Pessoal de Saúde , Barreiras de Comunicação , Educação de Pós-Graduação em Medicina/métodos , Internato e Residência , Comparação Transcultural , Medicina de Família e Comunidade/educação , Humanos , Indiana , Mianmar/etnologia , Pediatria/educação , Refugiados , Inquéritos e Questionários
9.
Public Health Rep ; 139(4): 425-431, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38264950

RESUMO

Childhood psychosocial experiences can have a lifelong effect on health. These experiences can be measured together as positive and adverse childhood experiences or individually as positive childhood experiences (PCEs) or adverse childhood experiences. Most research on PCEs has focused on how PCEs promote health outcomes. However, limited research has been conducted on the prevalence of PCEs among adolescents in local areas served by public health departments. The St. Joseph County Department of Health developed a study to test the feasibility of surveillance of PCEs through local public health departments and to establish a prevalence for PCE exposure among a population of urban public-school students in Indiana. We conducted a survey in spring 2022 that collected demographic information on students at 2 high schools and 1 middle school and assessed exposure to PCEs. We assessed prevalence of PCEs on a 5-point Likert scale (0 = never, 1 = rarely, 2 = sometimes, 3 = usually, 4 = always). PCE scores were grouped into low (0-2), medium (3-5), and high (6 or 7). The prevalence of individual PCE items ranged from 35.6% to 86.8%. Among 798 respondents, 189 (23.7%) reported low PCE scores, 396 (49.6%) reported medium scores, and 213 (26.7%) reported high scores. This research demonstrates the feasibility of school-based PCE surveillance and establishes a baseline prevalence of PCE exposure among a population of middle and high school students. These methods are applicable to different contexts and can provide both local health departments and school systems with a new tool to address adverse childhood experiences.


Assuntos
Instituições Acadêmicas , Humanos , Adolescente , Masculino , Feminino , Indiana/epidemiologia , Saúde Pública/métodos , Criança , Inquéritos e Questionários , Estudantes/psicologia , Estudantes/estatística & dados numéricos , Vigilância da População/métodos
10.
JAMA Netw Open ; 7(5): e2411190, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38743420

RESUMO

Importance: Finding effective and scalable solutions to address diagnostic delays and disparities in autism is a public health imperative. Approaches that integrate eye-tracking biomarkers into tiered community-based models of autism evaluation hold promise for addressing this problem. Objective: To determine whether a battery of eye-tracking biomarkers can reliably differentiate young children with and without autism in a community-referred sample collected during clinical evaluation in the primary care setting and to evaluate whether combining eye-tracking biomarkers with primary care practitioner (PCP) diagnosis and diagnostic certainty is associated with diagnostic outcome. Design, Setting, and Participants: Early Autism Evaluation (EAE) Hub system PCPs referred a consecutive sample of children to this prospective diagnostic study for blinded eye-tracking index test and follow-up expert evaluation from June 7, 2019, to September 23, 2022. Participants included 146 children (aged 14-48 months) consecutively referred by 7 EAE Hubs. Of 154 children enrolled, 146 provided usable data for at least 1 eye-tracking measure. Main Outcomes and Measures: The primary outcomes were sensitivity and specificity of a composite eye-tracking (ie, index) test, which was a consolidated measure based on significant eye-tracking indices, compared with reference standard expert clinical autism diagnosis. Secondary outcome measures were sensitivity and specificity of an integrated approach using an index test and PCP diagnosis and certainty. Results: Among 146 children (mean [SD] age, 2.6 [0.6] years; 104 [71%] male; 21 [14%] Hispanic or Latine and 96 [66%] non-Latine White; 102 [70%] with a reference standard autism diagnosis), 113 (77%) had concordant autism outcomes between the index (composite biomarker) and reference outcomes, with 77.5% sensitivity (95% CI, 68.4%-84.5%) and 77.3% specificity (95% CI, 63.0%-87.2%). When index diagnosis was based on the combination of a composite biomarker, PCP diagnosis, and diagnostic certainty, outcomes were concordant with reference standard for 114 of 127 cases (90%) with a sensitivity of 90.7% (95% CI, 83.3%-95.0%) and a specificity of 86.7% (95% CI, 70.3%-94.7%). Conclusions and Relevance: In this prospective diagnostic study, a composite eye-tracking biomarker was associated with a best-estimate clinical diagnosis of autism, and an integrated diagnostic model including PCP diagnosis and diagnostic certainty demonstrated improved sensitivity and specificity. These findings suggest that equipping PCPs with a multimethod diagnostic approach has the potential to substantially improve access to timely, accurate diagnosis in local communities.


Assuntos
Transtorno Autístico , Biomarcadores , Tecnologia de Rastreamento Ocular , Atenção Primária à Saúde , Humanos , Masculino , Feminino , Pré-Escolar , Atenção Primária à Saúde/métodos , Estudos Prospectivos , Lactente , Biomarcadores/sangue , Biomarcadores/análise , Transtorno Autístico/diagnóstico , Sensibilidade e Especificidade
11.
Health Qual Life Outcomes ; 11: 21, 2013 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-23432799

RESUMO

BACKGROUND: Neurofibromatosis type 1 (NF1) is a common autosomal dominant genetic disorder with significant impact on health-related quality of life (HRQOL). Research in understanding the pathogenetic mechanisms of neurofibroma development has led to the use of new clinical trials for the treatment of NF1. One of the most important outcomes of a trial is improvement in quality of life, however, no condition specific HRQOL instrument for NF1 exists. The objective of this study was to develop an NF1 HRQOL instrument as a module of PedsQL™ and to test for its initial feasibility, internal consistency reliability and validity in adults with NF1. METHODS: The NF1 specific HRQOL instrument was developed using a standard method of PedsQL™ module development - literature review, focus group/semi-structured interviews, cognitive interviews and experts' review of initial draft, pilot testing and field testing. Field testing involved 134 adults with NF1. Feasibility was measured by the percentage of missing responses, internal consistency reliability was measured with Cronbach's alpha and validity was measured by the known-groups method. RESULTS: Feasibility, measured by the percentage of missing responses was 4.8% for all subscales on the adult version of the NF1-specific instrument. Internal consistency reliability for the Total Score (alpha =0.97) and subscale reliabilities ranging from 0.72 to 0.96 were acceptable for group comparisons. The PedsQL™ NF1 module distinguished between NF1 adults with excellent to very good, good, and fair to poor health status. CONCLUSIONS: The results demonstrate the initial feasibility, reliability and validity of the PedsQL™ NF1 module in adult patients. The PedsQL™ NF1 Module can be used to understand the multidimensional nature of NF1 on the HRQOL patients with this disorder.


Assuntos
Neurofibromatose 1/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adulto , Idoso , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários/normas , Adulto Jovem
12.
Pediatrics ; 152(2)2023 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-37461867

RESUMO

OBJECTIVES: To evaluate the diagnostic accuracy of the Early Autism Evaluation (EAE) Hub system, a statewide network that provides specialized training and collaborative support to community primary care providers in the diagnosis of young children at risk for autism spectrum disorder (ASD). METHODS: EAE Hub clinicians referred children, aged 14 to 48 months, to this prospective diagnostic study for blinded follow-up expert evaluation including assessment of developmental level, adaptive behavior, and ASD symptom severity. The primary outcome was agreement on categorical ASD diagnosis between EAE Hub clinician (index diagnosis) and ASD expert (reference standard). RESULTS: Among 126 children (mean age: 2.6 years; 77% male; 14% Latinx; 66% non-Latinx white), 82% (n = 103) had consistent ASD outcomes between the index and reference evaluation. Sensitivity was 81.5%, specificity was 82.4%, positive predictive value was 92.6%, and negative predictive value was 62.2%. There was no difference in accuracy by EAE Hub clinician or site. Across measures of development, there were significant differences between true positive and false negative (FN) cases (all Ps < .001; Cohen's d = 1.1-1.4), with true positive cases evidencing greater impairment. CONCLUSIONS: Community-based primary care clinicians who receive specialty training can make accurate ASD diagnoses in most cases. Diagnostic disagreements were predominately FN cases in which EAE Hub clinicians had difficulty differentiating ASD and global developmental delay. FN cases were associated with a differential diagnostic and phenotypic profile. This research has significant implications for the development of future population health solutions that address ASD diagnostic delays.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Criança , Humanos , Masculino , Pré-Escolar , Feminino , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/epidemiologia , Estudos Prospectivos , Adaptação Psicológica , Atenção Primária à Saúde
13.
J Health Care Poor Underserved ; 33(3): 1461-1477, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36245175

RESUMO

The purpose of the program WeCare was to provide a personalized approach to addressing the wide array of psycho-social-cultural-fiscal needs to reduce risk factors for infant mortality (IM) by supporting maternal and infant health through health coaching by community health workers (CHWs). A prospective cohort study of 1,513 women from highest risk ZIP codes for IM in central Indiana were followed over three years. The WeCare program focused on training and deploying CHWs to provide evidence-based, patient-centered social care and support to pregnant and postpartum women and tracked outcomes in health risk categories (mental health, nutrition, safe sleep, breastfeeding) targeted for behavioral change. The low birth weight rate among program participants was lower (8.9%) than Marion County's rate (10%) (p=0.23) with statistically significant improvement in many risk behaviors. Despite limitations, the personalized coaching provided by the CHWs provided an effective, practical approach to maternal and child health disparities.


Assuntos
Agentes Comunitários de Saúde , Mortalidade Infantil , Criança , Feminino , Humanos , Indiana/epidemiologia , Lactente , Gravidez , Avaliação de Programas e Projetos de Saúde , Estudos Prospectivos , Fatores de Risco
14.
Pediatrics ; 148(5)2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34642233

RESUMO

BACKGROUND: A woman's health in the interconception period has an impact on birth outcomes. Pediatric visits offer a unique opportunity to provide interconception care (ICC). Our aim was to screen and provide interconception and safe sleep screening, counseling, and interventions for 50% of caregivers of children <2 years of age in a pediatric medical setting. METHODS: Two pediatric clinics implemented the March of Dimes' Interventions to Minimize Preterm and Low Birth Weight Infants Through Continuous Improvement Techniques (IMPLICIT) toolkit, in addition to standardized safe sleep assessments. A quality improvement learning collaborative was formed with a local "infant mortality champion" leading quality improvement efforts. Monthly webinars with the clinic teams reviewed project successes and challenges. Framework for Reporting Adaptations and Modifications was used to document adaptations. RESULTS: For each individual IMPLICIT domain, clinics screened and provided needed interventions for ICC and safe sleep in >50% of eligible encounters. Over the course of the quality improvement learning collaborative, the number of caregivers screened for at least 4 of the 5 IMPLICIT domains increased from 0% to 95%. CONCLUSIONS: To successfully implement the IMPLICIT toolkit in pediatrics, adaptations were made to the existing model, which had previously been used in family medicine clinics. Pediatricians should consider providing ICC as an innovative way to impact infant mortality rates in their community. Framework for Reporting Adaptations and Modifications can be used to systematically describe the adaptations needed to improve the fit of IMPLICIT in the pediatric clinic, understand the process of change and potential application to local context.


Assuntos
Recém-Nascido de Baixo Peso , Bem-Estar Materno , Pediatria , Cuidado Pré-Concepcional/métodos , Sono , Intervalo entre Nascimentos , Feminino , Humanos , Lactente , Cuidado do Lactente , Mortalidade Infantil , Bem-Estar do Lactente , Recém-Nascido , Cuidado Pré-Concepcional/normas , Nascimento Prematuro/prevenção & controle , Melhoria de Qualidade
15.
Eur J Paediatr Neurol ; 28: 64-69, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32847704

RESUMO

OBJECTIVES: The objective was to investigate the serial mediating effects of perceived cognitive functioning and pain interference in daily living in the relationship between perceived pain and overall generic health-related quality of life (HRQOL) in children, adolescents, and young adults with Neurofibromatosis Type 1 (NF1). METHODS: The Pain, Cognitive Functioning, and Pain Impact Scales from the PedsQL Neurofibromatosis Type 1 Module and the PedsQL 4.0 Generic Core Scales were completed in a multi-site national study by 323 patients ages 5-25 and 335 parents. A serial multiple mediator model analysis was conducted to test the hypothesized sequential mediating effects of cognitive functioning and pain interference as intervening variables in the association between pain as a predictor variable and overall generic HRQOL. RESULTS: Pain predictive effects on overall generic HRQOL were serially mediated by cognitive functioning and pain interference. In predictive analytics models utilizing hierarchical multiple regression analyses with age and gender demographic covariates, pain, cognitive functioning and pain interference accounted for 66% of the variance in patient-reported generic HRQOL and 57% of the variance in parent proxy-reported generic HRQOL (P < 0.001), reflecting large effect sizes. CONCLUSIONS: Cognitive functioning and pain interference explain in part the mechanism of pain predictive effects on overall generic HRQOL in pediatric patients with NF1. Identifying NF1-specific pain, cognitive functioning, and pain interference as salient predictors of overall generic HRQOL from the patient and parent perspective facilitates a family-centered orientation to the comprehensive care of children, adolescents, and young adults with NF1.


Assuntos
Cognição , Neurofibromatose 1/psicologia , Dor/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Neurofibromatose 1/complicações , Dor/etiologia , Análise de Regressão , Adulto Jovem
16.
Pediatrics ; 146(2)2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32632023

RESUMO

Although autism spectrum disorder (ASD) can be reliably detected in the second year of life, the average age of diagnosis is 4 to 5 years. Limitations in access to timely ASD diagnostic evaluations delay enrollment in interventions known to improve developmental outcomes. As such, developing and testing streamlined methods for ASD diagnosis is a public health and research priority. In this report, we describe the Early Autism Evaluation (EAE) Hub system, a statewide initiative for ASD screening and diagnosis in the primary care setting. Development of the EAE Hub system involved geographically targeted provision of developmental screening technical assistance to primary care, community outreach, and training primary care clinicians in ASD evaluation. At the EAE Hubs, a standard clinical pathway was implemented for evaluation of children, ages 18 to 48 months, at risk for ASD. From 2012 to 2018, 2076 children were evaluated (mean age: 30 months; median evaluation wait time: 62 days), and 33% of children received a diagnosis of ASD. Our findings suggest that developing a tiered system of developmental screening and early ASD evaluation is feasible in a geographic region facing health care access problems. Through targeted delivery of education, outreach, and intensive practice-based training, large numbers of young children at risk for ASD can be identified, referred, and evaluated in the local primary care setting. The EAE Hub model has potential for dissemination to other states facing similar neurodevelopmental health care system burdens. Implementation lessons learned and key system successes, challenges, and future directions are reviewed.


Assuntos
Transtorno do Espectro Autista/diagnóstico , Programas de Rastreamento , Transtorno do Espectro Autista/epidemiologia , Pré-Escolar , Procedimentos Clínicos , Diagnóstico Precoce , Humanos , Indiana/epidemiologia , Lactente , Capacitação em Serviço , Profissionais de Enfermagem Pediátrica/educação , Pediatras/educação , Atenção Primária à Saúde , Vigilância em Saúde Pública
17.
J Public Health Dent ; 69(4): 242-7, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-19453865

RESUMO

OBJECTIVES: To ascertain what proportion of dental hygienists and dentists in Indiana, United States, support the application of fluoride varnish in medical offices, and to determine if support differed by dental provider characteristics, practice characteristics, a limited assessment of knowledge about fluoride, or use of fluoride. METHODS: Practicing dental hygienists and dentists in 2005 were asked to fill out a mail questionnaire. Logistic regression models tested the association of independent variables with support for medical providers applying varnish. RESULTS: Response rates were 36% (dental hygienists) and 37% (dentists); median year of graduation was 1988 and 1981. Sixty-six percent of respondents were in solo practices, 82% of dentists in general practice, 5% in dental pediatrics, and 13% were other specialists. While 51.2% of dental professionals agreed that medical practices could apply fluoride varnish, 29% responded "none" should be allowed, and 19% were undecided. In the multivariable logistic regression for support of medical practices applying fluoride versus not supporting it, three practice characteristics and two measures of fluoride use were significant. Provider characteristics and a limited assessment about knowledge about fluoride were not significant. CONCLUSIONS: Half of dental professionals felt that it was appropriate for medical providers to apply fluoride varnish; pediatric dental professionals were less supportive. A few dental practice characteristics were associated with acceptance of the use of fluoride varnish by medical care providers: targeting messages to dental hygienists and those with practices in mixed rural-urban areas may be a useful approach to garner greater support for this medical/dental partnership.


Assuntos
Atitude do Pessoal de Saúde , Cariostáticos/administração & dosagem , Higienistas Dentários/psicologia , Odontólogos/psicologia , Fluoretos Tópicos/administração & dosagem , Pediatria , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Indiana , Relações Interprofissionais , Modelos Logísticos , Prática Profissional/estatística & dados numéricos , População Rural , Inquéritos e Questionários , População Urbana
18.
J Allergy Clin Immunol ; 122(4): 760-765, 2008 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-18760452

RESUMO

BACKGROUND: Family histories of atopy, as well as histories of atopic dermatitis and food allergy, are important risk factors for an infant to have asthma. Although atopic sensitization appears to contribute to the development of asthma, it is unclear when the airways become involved with the atopic process and whether airway function relates to the atopic characteristics of the infant. OBJECTIVE: We sought to evaluate whether atopic infants without prior episodes of wheezing have increased expired nitric oxide (eNO) levels and heightened airway reactivity. METHODS: Infants with eczema were recruited, and atopic status was defined by specific IgE levels to foods or aeroallergens and total IgE levels. eNO, forced expiratory flow at 75% exhaled volume (FEF(75)), and airway reactivity to inhaled methacholine were measured in sedated infants. Airway reactivity was quantified by using the provocative concentration to decrease FEF(75) by 30%. RESULTS: Median age for the 114 infants evaluated was 10.7 months (range, 2.6-19.1 months). Infants sensitized to egg or milk compared with infants sensitized to neither egg nor milk had lower flows (FEF(75): 336 vs 285 mL/s, P < .003) and lower lnPC(30) (mg/mL) provocative concentrations to decrease FEF(75) by 30% (-0.6 vs -1.2, P < .02) but no difference in eNO levels. Infants with total serum IgE levels of greater than 20 IU/mL had higher eNO levels compared with infants with IgE levels of 20 IU/mL or less (14.6 vs 11.2 ppb, P < .023) but no difference in forced flows or airway reactivity. CONCLUSIONS: Our findings suggest that atopic characteristics of the infant might be important determinants of the airway physiology of forced expiratory flows, airway reactivity, and eNO.


Assuntos
Asma/metabolismo , Eczema/metabolismo , Hipersensibilidade Alimentar/metabolismo , Óxido Nítrico/metabolismo , Ventilação Pulmonar , Asma/etiologia , Eczema/complicações , Feminino , Hipersensibilidade Alimentar/complicações , Humanos , Imunoglobulina E/sangue , Lactente , Masculino , Óxido Nítrico/análise , Sons Respiratórios , Fatores de Risco
19.
J Spec Pediatr Nurs ; 22(2)2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-28198162

RESUMO

PURPOSE: Provide an in-depth description of the health-related quality of life (HRQoL) in youth diagnosed with neurofibromatosis type 1 (NF1) and their families. DESIGN AND METHODS: Data were drawn from qualitative interviews conducted for a larger study aimed at developing the Pediatric Quality of Life Inventory™ (PedsQL™) NF1 module. RESULTS: Youth with NF1 and their families experience a wide range of concerns related to HRQoL due to the varied symptom expression and uncertain trajectory of the disorder. PRACTICE IMPLICATIONS: Pediatric nurses should routinely assess for HRQoL in this population and develop strategies tailored to those concerns that require intervention.


Assuntos
Neurofibromatose 1/psicologia , Pais/psicologia , Qualidade de Vida/psicologia , Adaptação Psicológica , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Psicometria , Estresse Psicológico , Inquéritos e Questionários , Adulto Jovem
20.
Ambul Pediatr ; 6(6): 337-41, 2006.
Artigo em Inglês | MEDLINE | ID: mdl-17116607

RESUMO

OBJECTIVES: To describe baseline perceptions of first-year pediatric residents of participating in community activities, to determine whether demographic factors are related to perceived benefits and constraints, and to identify factors associated with expected community involvement. METHODS: Pediatric residents beginning their training in the fall of 2000 to 2003 participated in a 12-item self-administered written survey as part of the national evaluation of the Dyson Community Pediatrics Training Initiative. RESULTS: Of the 612 first-year residents surveyed (90% response rate), most reported they receive personal satisfaction (92%) and gain valuable skills and knowledge (83%) from their involvement in community activities. Less than a quarter felt peer support and professional recognition were benefits. Almost two thirds reported logistics and lost personal time as constraints to community involvement. Compared with their colleagues, older residents (> 29 years) and underrepresented minority residents reported fewer constraints. Most residents (72%) expect moderate to substantial involvement in community activities after graduating. Those expecting greater involvement were more likely to report personal satisfaction, gaining valuable skills and knowledge, peer support, and the opportunity to spend time with like-minded peers as benefits. CONCLUSIONS: Pediatric residents beginning their postgraduate training perceive numerous benefits from their participation in community activities and most expect a moderate degree of future community involvement. Residency directors should: 1) consider their trainees' insights from prior community involvement and 2) integrate meaningful community experiences in ways that confront logistic barriers and time constraints.


Assuntos
Atitude do Pessoal de Saúde , Medicina Comunitária/educação , Relações Comunidade-Instituição , Pediatria/educação , Satisfação Pessoal , Adulto , Agendamento de Consultas , Atitude do Pessoal de Saúde/etnologia , Competência Clínica , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Apoio Social , Fatores Socioeconômicos , Inquéritos e Questionários , Gerenciamento do Tempo , Estados Unidos
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