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1.
J Clin Sleep Med ; 2024 Apr 25.
Artículo en Inglés | MEDLINE | ID: mdl-38661675

RESUMEN

STUDY OBJECTIVES: Advances in prenatal repair of myelomeningocele (MMC) have improved outcomes involving different organ systems. There is limited data on respiratory outcomes following prenatal surgical repair. We hypothesize there is no difference in respiratory outcomes between spina bifida (SB) patients who have undergone prenatal versus postnatal repair. METHODS: We performed a retrospective study of 46 infants <1 year with SB seen at Children's Hospital Los Angeles from 2004-2022. Demographic data, timing of closure, neonatal course, Chiari II malformation (CIIM), ventriculoperitoneal shunt (VPS), polysomnography (PSG) results, and need for supplemental oxygen were collected. Unpaired t-test and Chi-square Test were used to analyze results. RESULTS: 31/46 had prenatal repair of MMC; average age at repair was 27 weeks post-conception (PCA). Average age at postnatal repair was 37 PCA. There was no difference in age at PSG. There was no difference in CIIM presence (p=0.61). 60% of patients with postnatal repair and 23% in the prenatal group underwent VPS placement (p=0.01).There was no difference in PSG findings between the two groups: CAI (p=0.11), OAHI (p=0.64), average SpO2 baseline (p=0.91), average SpO2 nadir (p=0.17), average PETCO2 baseline (p=0.87), and average PETCO2 maximum (p=0.54). There were no significant differences in the proportion of patients on supplemental O2 (p=0.25), CSA or OSA between groups. CONCLUSIONS: Patients with SB who've undergone closure of neural tube defect have persistent central apneas, obstructive apneas, and significant hypoxemia. There were no differences in the frequency or severity of sleep-disordered breathing in those with prenatal repair versus postnatal repair.

2.
J Spinal Cord Med ; : 1-10, 2023 Sep 28.
Artículo en Inglés | MEDLINE | ID: mdl-37769142

RESUMEN

CONTEXT: Adolescents and young adults (AYA) with spina bifida (SB) are more susceptible to obesity due to impaired mobility. There is limited access to physical activity for this population. OBJECTIVE: The primary aim of this study was to evaluate the feasibility of a mobile health app in a weight management program for AYA with SB. This was determined by measuring program adherence, active use of the app (defined as ≥3 uses per week), and user rating of the Pt Pal™ mobile app. Secondary outcomes were changes in BMI, quality of life, and health behavior, and the number of active participants over time. METHODS: Patients from the SB Clinic of a large metropolitan hospital between the ages of 11-21 years and overweight were invited to participate. The program consisted of group nutrition sessions and an individualized exercise plan using a mobile app with coaching. Outcome measures were program adherence, changes in BMI, and validated survey responses. Descriptive statistical analysis was performed. RESULTS: Fifteen participants enrolled, and ten participants completed the program. Five of the ten participants attended the nutrition sessions. The number of active app users declined after the first week. Seventy percent of participants decreased their BMI. Most participants reported the program improved their ability to exercise regularly, eat a healthier diet and feel more self-confident. Peds QL™ psychosocial health domains increased postintervention. The YRBS showed increased physical activity and less sedentary time postintervention. CONCLUSIONS: This mobile app-based weight management program with coaching implemented may not be feasible for adoption in the general population of AYA with SB; however, it was well received by some, and further testing is needed to determine how to improve feasibility. This study provides useful information to guide future programs utilizing digital health and coaching.

3.
Glob Chang Biol ; 29(19): 5482-5508, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37466251

RESUMEN

Human activities and climate change threaten coldwater organisms in freshwater ecosystems by causing rivers and streams to warm, increasing the intensity and frequency of warm temperature events, and reducing thermal heterogeneity. Cold-water refuges are discrete patches of relatively cool water that are used by coldwater organisms for thermal relief and short-term survival. Globally, cohesive management approaches are needed that consider interlinked physical, biological, and social factors of cold-water refuges. We review current understanding of cold-water refuges, identify gaps between science and management, and evaluate policies aimed at protecting thermally sensitive species. Existing policies include designating cold-water habitats, restricting fishing during warm periods, and implementing threshold temperature standards or guidelines. However, these policies are rare and uncoordinated across spatial scales and often do not consider input from Indigenous peoples. We propose that cold-water refuges be managed as distinct operational landscape units, which provide a social and ecological context that is relevant at the watershed scale. These operational landscape units provide the foundation for an integrated framework that links science and management by (1) mapping and characterizing cold-water refuges to prioritize management and conservation actions, (2) leveraging existing and new policies, (3) improving coordination across jurisdictions, and (4) implementing adaptive management practices across scales. Our findings show that while there are many opportunities for scientific advancement, the current state of the sciences is sufficient to inform policy and management. Our proposed framework provides a path forward for managing and protecting cold-water refuges using existing and new policies to protect coldwater organisms in the face of global change.


Asunto(s)
Ecosistema , Ríos , Humanos , Agua Dulce , Frío , Cambio Climático , Agua
4.
Dev Med Child Neurol ; 65(6): 821-830, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36385606

RESUMEN

AIM: To describe the education and employment transition experience of young adults with spina bifida (YASB) and investigate factors associated with employment. METHOD: We queried education and employment data from the US National Spina Bifida Patient Registry from 2009 to 2019. We applied generalized estimating equations models to analyze sociodemographic and disease-related factors associated with employment. RESULTS: A total of 1909 participants (850 males, 1059 females) aged 18 to 26 years contributed 4379 annual visits. Nearly 84% had myelomeningocele and, at last visit, the median age was 21 years (mean 21 years 5 months, SD 2 years 10 months). A total of 41.8% had at least some post-high school education, and 23.9% were employed. In a multivariable regression model, employment was significantly associated with education level, lower extremity functional level, bowel continence, insurance, and history of non-shunt surgery. This large, national sample of YASB demonstrated low rates of post-secondary education attainment and employment and several potentially modifiable factors associated with employment. INTERPRETATION: Specific sociodemographic, medical, and functional factors associated with employment are important for clinicians to consider when facilitating transition for YASB into adulthood. Additional research is needed to understand the impact of cognitive functioning and social determinants of health on transition success in YASB. WHAT THIS PAPER ADDS: There were low education attainment and employment rates in a large sample of young adults with spina bifida. Specific sociodemographic, medical, and functional factors are associated with employment. Some employment-associated factors, such as continence and self-management skills, are modifiable.


Asunto(s)
Meningomielocele , Disrafia Espinal , Masculino , Femenino , Humanos , Adulto Joven , Adulto , Escolaridad , Disrafia Espinal/epidemiología , Disrafia Espinal/psicología , Empleo , Sistema de Registros
5.
Disabil Health J ; 16(1): 101373, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36156271

RESUMEN

BACKGROUND: Spina bifida (SB) is a condition resulting from the improper closure of the neural tube and vertebral column during fetal development. While patients' life expectancy and quality of life have improved dramatically due to medical advances, children continue to experience health-related issues that often require hospitalizations. OBJECTIVE: The association among sociodemographic and clinical characteristics with potentially preventable hospitalizations (PPH) in children and youth with myelomeningocele type SB was investigated in this cross-sectional study. METHODS: Chart reviews and data extraction were conducted on 108 children and youth, ages 1 month to 21 years, admitted for PPH in a regional children's academic medical center between May 2017 and July 2019. Sociodemographic variables included sex, age, type of insurance and ethnicity. Clinical variables included level of lesion, ambulation status, shunt dependency and selected diagnostic categories. Univariate, bivariate, and multivariate analyses were conducted to identify factors associated with PPH. RESULTS: Factors associated with PPH included being male, ages 5-18 years, low lumbar level lesions, non-ambulatory, with public insurance, Hispanic and shunt dependent. Most hospitalizations (73%) were for neurologic or urologic conditions. Factors independently associated with PPH were ethnicity for urologic conditions, being ambulatory for metabolic conditions, and age for gastroenterology conditions. CONCLUSION: Selected demographic and clinical variables were found to be associated with PPH of children and youth with myelomeningocele-type SB. The most common reasons for PPH were shunt malfunctions and urinary tract infections, consistent with other studies.


Asunto(s)
Personas con Discapacidad , Meningomielocele , Disrafia Espinal , Niño , Adolescente , Humanos , Masculino , Preescolar , Femenino , Meningomielocele/complicaciones , Estudios Transversales , Calidad de Vida , Población Urbana , Disrafia Espinal/complicaciones , Hospitalización , Factores de Riesgo , Hospitales
6.
J Pediatr Rehabil Med ; 15(4): 593-605, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36442216

RESUMEN

PURPOSE: The purpose of this exploratory study was to investigate the types of academic and health-related accommodations provided to adolescents and emerging adults with spina bifida aged 9-20 years. METHODS: Data were extracted from the paper and electronic records of transition-age youth enrolled in the study. Four open ended items involved content analysis. RESULTS: The most frequently identified accommodation was enrollment in special education classes in 47.7% of the charts. Other academic accommodations that were most often reported were adaptive physical education (n = 71, 39.9%), tutoring (n = 28; 15.7%), and home schooling (n = 21; 11.8%). Clean intermittent catheterization was the most frequently identified health-related accommodation provided by the school nurse/aide (n = 57; 32%).The largest percentage of requests for additional accommodations were made during the middle school grades (15; 54.8%) followed by high school (10; 32.2%). CONCLUSION: Findings demonstrated that persistent issues were identified by parents/adolescents regarding the provision of school-related accommodations. This is a relevant area for clinical practice to ensure students with special health care needs and those with spina bifida receive the academic and health-related accommodations in their Individualized Education Program/504 plans.


Asunto(s)
Atención a la Salud , Disrafia Espinal , Humanos , Adulto , Adolescente , Instituciones Académicas , Padres , Educación Especial
7.
Essays Biochem ; 66(2): 229-242, 2022 08 05.
Artículo en Inglés | MEDLINE | ID: mdl-35538741

RESUMEN

Plant peroxisomes host critical metabolic reactions and insulate the rest of the cell from reactive byproducts. The specialization of peroxisomal reactions is rooted in how the organelle modulates its proteome to be suitable for the tissue, environment, and developmental stage of the organism. The story of plant peroxisomal proteostasis begins with transcriptional regulation of peroxisomal protein genes and the synthesis, trafficking, import, and folding of peroxisomal proteins. The saga continues with assembly and disaggregation by chaperones and degradation via proteases or the proteasome. The story concludes with organelle recycling via autophagy. Some of these processes as well as the proteins that facilitate them are peroxisome-specific, while others are shared among organelles. Our understanding of translational regulation of plant peroxisomal protein transcripts and proteins necessary for pexophagy remain based in findings from other models. Recent strides to elucidate transcriptional control, membrane dynamics, protein trafficking, and conditions that induce peroxisome turnover have expanded our knowledge of plant peroxisomal proteostasis. Here we review our current understanding of the processes and proteins necessary for plant peroxisome proteostasis-the emergence, maintenance, and clearance of the peroxisomal proteome.


Asunto(s)
Peroxisomas , Proteoma , Autofagia/genética , Peroxisomas/metabolismo , Transporte de Proteínas , Proteoma/metabolismo , Proteostasis
8.
Nat Commun ; 12(1): 3914, 2021 06 24.
Artículo en Inglés | MEDLINE | ID: mdl-34168131

RESUMEN

Pyrrolysine (Pyl, O) exists in nature as the 22nd proteinogenic amino acid. Despite being a fundamental building block of proteins, studies of Pyl have been hindered by the difficulty and inefficiency of both its chemical and biological syntheses. Here, we improve Pyl biosynthesis via rational engineering and directed evolution of the entire biosynthetic pathway. To accommodate toxicity of Pyl biosynthetic genes in Escherichia coli, we also develop Alternating Phage Assisted Non-Continuous Evolution (Alt-PANCE) that alternates mutagenic and selective phage growths. The evolved pathway provides 32-fold improved yield of Pyl-containing reporter protein compared to the rationally engineered ancestor. Evolved PylB mutants are present at up to 4.5-fold elevated levels inside cells, and show up to 2.2-fold increased protease resistance. This study demonstrates that Alt-PANCE provides a general approach for evolving proteins exhibiting toxic side effects, and further provides an improved pathway capable of producing substantially greater quantities of Pyl-proteins in E. coli.


Asunto(s)
Vías Biosintéticas/genética , Evolución Molecular Dirigida/métodos , Escherichia coli/genética , Lisina/análogos & derivados , Proteínas Bacterianas/genética , Proteínas Bacterianas/metabolismo , Colifagos/genética , Escherichia coli/metabolismo , Proteínas Fluorescentes Verdes/genética , Proteínas Fluorescentes Verdes/metabolismo , Lisina/biosíntesis , Microorganismos Modificados Genéticamente , Mutación , Operón , ARN de Transferencia/genética , ARN de Transferencia/metabolismo , Proteínas Recombinantes/genética , Proteínas Recombinantes/metabolismo , Solubilidad
9.
J Urol ; 206(1): 126-132, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33683941

RESUMEN

PURPOSE: Urinary tract infections commonly occur in patients with spina bifida and pose a risk of renal scarring. Routine antibiotic prophylaxis has been utilized in newborns with spina bifida to prevent urinary tract infections. We hypothesized that prophylaxis can safely be withheld in newborns with spina bifida until clinical assessment allows for risk stratification. MATERIALS AND METHODS: Newborns with myelomeningocele at 9 institutions were prospectively enrolled in the UMPIRE study and managed by a standardized protocol with a strict definition of urinary tract infection. Patient data were collected regarding details of reported urinary tract infection, baseline renal ultrasound findings, vesicoureteral reflux, use of clean intermittent catheterization and circumcision status in boys. Risk ratios and corresponding 95% confidence intervals were calculated using log-binomial models. RESULTS: From February 2015 through August 2019 data were available on 299 newborns (50.5% male). During the first 4 months of life, 48 newborns (16.1%) were treated for urinary tract infection with 23 (7.7%) having positive cultures; however, only 12 (4.0%) met the strict definition of urinary tract infection. Infants with grade 3-4 hydronephrosis had an increased risk of urinary tract infection compared to infants with no hydronephrosis (RR=10.1; 95% CI=2.8, 36.3). Infants on clean intermittent catheterization also had an increased risk of urinary tract infection (RR=3.3; 95% CI=1.0, 10.5). CONCLUSIONS: The incidence of a culture positive, symptomatic urinary tract infection among newborns with spina bifida in the first 4 months of life was low. Patients with high grades of hydronephrosis or those on clean intermittent catheterization had a significantly greater incidence of urinary tract infection. Our findings suggest that routine antibiotic prophylaxis may not be necessary for most newborns with spina bifida.


Asunto(s)
Profilaxis Antibiótica , Meningomielocele/complicaciones , Disrafia Espinal/complicaciones , Infecciones Urinarias/epidemiología , Infecciones Urinarias/prevención & control , Femenino , Humanos , Incidencia , Lactante , Recién Nacido , Masculino , Estudios Prospectivos , Infecciones Urinarias/etiología
10.
Am J Intellect Dev Disabil ; 125(5): 369-388, 2020 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-32936891

RESUMEN

We examined racial and ethnic differences in the prevalence of behavioral problems measured by the Child Behavioral Checklist (CBCL), sleep disturbances measured by the Child Sleep Habits Questionnaire (CSHQ), and medication use among children with Autism Spectrum Disorders (ASD). We analyzed data from the Autism Treatment Network (ATN) dataset for 2,576 children ages 6 to 18 years of age diagnosed with ASD. Multivariable logistic regression accounting for age, gender, Diagnostic and Statistical Manual of Mental Disorders (4th Edition - Text Revision), diagnosis (Autistic Disorder, PDD-NOS, Asperger's Disorder), and parents' education did not show any racial or ethnic differences in behavioral challenges, conduct problems, or sleep disturbances for any of the groups, but Black children had lower odds of Total Problem Behaviors and Asian children had lower odds of Hyperactivity compared to White children. As a group, children from racial and ethnic minorities had lower odds of Total Problem Behaviors and Conduct Problems compared to White children. Hispanic children had lower odds of medication use for Behavioral Challenges, Total Problem Behaviors, Hyperactivity, and Conduct Problems. Asian children had lower odds of medication use for Behavioral Challenges, Total Problem Behaviors, and Hyperactivity; and had close to lower odds in medication use for Conduct Problems. Black children had lower odds for medication use for Total Problem Behaviors only. As a group, children from racial and ethnic minorities had lower odds for medication use for Behavioral Challenges, Total Problem Behaviors, Hyperactivity, and Conduct problems, but not for Sleep Disturbances. While these results are consistent with previous studies showing that White children are significantly more likely to receive psychotropic medication compared to children from racial and ethnic minority groups, we found no such differences for sleep challenges, suggesting that they are more consistently identified and equitably treated than other behavioral problems associated with ASD. We draw upon Andersen's (1995) Behavioral Model of Healthcare Use to suggest predisposing, enabling, and needs factors that may contribute to this pattern of racial and ethnic differences in the use of medications among children ASD.


Asunto(s)
Trastorno del Espectro Autista/tratamiento farmacológico , Trastorno del Espectro Autista/etnología , Trastorno del Espectro Autista/fisiopatología , Problema de Conducta , Adolescente , Niño , Conjuntos de Datos como Asunto , Femenino , Humanos , Masculino , Grupos Minoritarios/estadística & datos numéricos , Prevalencia , Estados Unidos/etnología , Población Blanca/etnología
11.
JBI Evid Synth ; 18(5): 1135-1143, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-32813368

RESUMEN

OBJECTIVE: The objective of this scoping review is to explore the evidence on psychosocial needs and related outcomes for adults with spina bifida. INTRODUCTION: Individuals with spinal bifida have complex service needs that can lead to the emergence of secondary conditions and health complications, which can result in serious, life-threatening illnesses. While much is known about the biological impact of spina bifida, there is a dearth of information regarding its psychological and social impact. INCLUSION CRITERIA: This scoping review will include adults (18 years and over) with the following diagnoses: spina bifida, neural tube defects, tethered cord, myelodysplasia/myelodysplasias, diastematomyelia/diastematomyelias, meningomyelocele, terminal myelocystocele, fatty thickened filum, split cord malformation, or lipomyelomeningocele. The literature reviewed will explore the range and trend of topics reported from the time data on adults with spinal bifida were first published published to the most current time frame. This review will report on the psychosocial needs identified for adults with spinal bifida, such as access to community-based services and support needed to function independently. There will be no limits to the geographical location or setting (e.g. health care or community-based). METHODS: The following databases will be accessed for this review: Ovid MEDLINE, Embase, Cochrane Library, CINAHL, Web of Science, PsycINFO, and ERIC, with no date restrictions. Gray literature searches will be included. Potentially relevant studies will be assessed independently by two reviewers for inclusion and conflicts discussed with a third reviewer. The review narrative will be accompanied by findings presented in tabular format.


Asunto(s)
Meningomielocele , Defectos del Tubo Neural , Disrafia Espinal , Adolescente , Adulto , Atención a la Salud , Humanos , Literatura de Revisión como Asunto , Columna Vertebral
12.
Microorganisms ; 8(5)2020 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-32370119

RESUMEN

Colicins are specific and potent toxins produced by Enterobacteriaceae that result in the rapid elimination of sensitive cells. Colicin production is commonly found throughout microbial populations, suggesting its potential importance for bacterial survival in complex microbial environments. Nonetheless, as colicin biology has been predominately studied using synthetic models, it remains unclear how colicin production contributes to survival and fitness of a colicin-producing commensal strain in a natural environment. To address this gap, we took advantage of MP1, an E. coli strain that harbors a colicinogenic plasmid and is a natural colonizer of the murine gut. Using this model, we validated that MP1 is competent for colicin production and then directly interrogated the importance of colicin production and immunity for MP1 survival in the murine gut. We showed that colicin production is dispensable for sustained colonization in the unperturbed gut. A strain lacking colicin production or immunity shows minimal fitness defects and can resist displacement by colicin producers. This report extends our understanding of the role that colicin production may play for E. coli during gut colonization and suggests that colicin production is not essential for a commensal to persist in its physiologic niche in the absence of exogenous challenges.

13.
Pediatrics ; 145(Suppl 1): S35-S46, 2020 04.
Artículo en Inglés | MEDLINE | ID: mdl-32238530

RESUMEN

CONTEXT: Research reveals racial, ethnic, and socioeconomic disparities in autism diagnosis; there is limited information on potential disparities related to other dimensions of services. OBJECTIVE: We reviewed evidence related to disparities in service use, intervention effectiveness, and quality of care provided to children with autism by race, ethnicity, and/or socioeconomic status. DATA SOURCES: Medline, PsychInfo, Educational Resources Informational Clearinghouse, and the Cumulative Index to Nursing and Allied Health Literature were searched by using a combination of Medical Subject Headings terms and keywords related to autism, disparities, treatment, and services. STUDY SELECTION: Included studies addressed at least one key question and met eligibility criteria. DATA EXTRACTION: Two authors reviewed the titles and abstracts of articles and reviewed the full text of potentially relevant articles. Authors extracted information from articles that were deemed appropriate. RESULTS: Treatment disparities exist for access to care, referral frequency, number of service hours, and proportion of unmet service needs. Evidence revealed that racial and ethnic minority groups and children from low-income families have less access to acute care, specialized services, educational services, and community services compared with higher-income and white families. We found no studies in which differences in intervention effectiveness were examined. Several studies revealed disparities such that African American and Hispanic families and those from low-income households reported lower quality of care. LIMITATIONS: The body of literature on this topic is small; hence it served as a limitation to this review. CONCLUSIONS: The documented disparities in access and quality of care may further identify groups in need of outreach, care coordination, and/or other interventions.


Asunto(s)
Trastorno Autístico/terapia , Servicios de Salud del Niño/estadística & datos numéricos , Utilización de Instalaciones y Servicios/estadística & datos numéricos , Disparidades en Atención de Salud/estadística & datos numéricos , Niño , Humanos
14.
Disabil Health J ; 13(2): 100883, 2020 04.
Artículo en Inglés | MEDLINE | ID: mdl-31928964

RESUMEN

The multidisciplinary model (MCM) is described as one that utilizes skills and experience from practitioners belonging to various disciplines, each treating patients from a specific clinical perspective.1 The Spina Bifida Association (SBA) supports and recommends that clinical care for people with Spina Bifida (SB) be provided in specialty clinics of which the MCM is an example; that care be coordinated; and that there be a plan for transitional care.2 This paper explores the challenges the MCM faces with a transitioning and aging population in a care system that calls for a positive patient experience, engaged health care professionals, desired outcomes, with consideration of cost.


Asunto(s)
Atención a la Salud/estadística & datos numéricos , Personas con Discapacidad/psicología , Personas con Discapacidad/estadística & datos numéricos , Personal de Salud/psicología , Grupo de Atención al Paciente/normas , Disrafia Espinal/psicología , Disrafia Espinal/terapia , Adolescente , Adulto , Actitud del Personal de Salud , Niño , Preescolar , Femenino , Personal de Salud/estadística & datos numéricos , Humanos , Lactante , Masculino , Persona de Mediana Edad , Filosofía Médica , Guías de Práctica Clínica como Asunto , Estados Unidos , Adulto Joven
15.
J Pediatr Rehabil Med ; 12(4): 361-368, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31744028

RESUMEN

BACKGROUND: Ethnic disparities in continence rates in spina bifida (SB) have been studied regionally but not nationally. National SB Patient Registry (NSBPR) data were analyzed to explore differences in prevalence of bowel and bladder continence and interventions between Hispanics/Latinos and others. METHODS: Participants 5 to 21 years were categorized into Hispanic/Latino and non-Hispanic/non-Latino. Bladder/bowel continence was defined as dry/no involuntary stool leakage during the day or none/⩽ monthly incontinence. Chi-square test, Wilcoxon Two Sample Test, and generalized estimating equation (GEE) were used for statistical analysis. RESULTS: Twenty-five percent of the 4,364 patients were Hispanic/Latino. At their most recent clinic visit, Hispanics/Latinos demonstrated lower rates of urinary continence (38.6% vs. 44.9%; p= 0.0003), bowel continence (43.9% vs. 55.8%, p< 0.0001), private insurance (p< 0.0001), bowel (p< 0.0001) or bladder surgeries (p= 0.0054), and more vesicostomies (p= 0.0427) compared to others. In multiple GEE models, Hispanic/Latino participants demonstrated lower odds of bowel continence as compared to non-Hispanic/non-Latino participants (estimated odds ratio, 0.82, 95% CI, 0.72-0.94, p= 0.0032). CONCLUSIONS: After controlling for covariates, Hispanics/Latinos with SB are less likely to report bowel continence. Clinicians are encouraged to consider the risk of negative health disparities for Hispanic patients with SB and work to mitigate this risk.


Asunto(s)
Incontinencia Fecal/epidemiología , Incontinencia Fecal/etiología , Disrafia Espinal/complicaciones , Incontinencia Urinaria/epidemiología , Incontinencia Urinaria/etiología , Adolescente , Niño , Preescolar , Etnicidad , Femenino , Humanos , Masculino , Prevalencia , Adulto Joven
16.
J Pediatr Rehabil Med ; 12(4): 393-403, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31744030

RESUMEN

PURPOSE: The purpose of this study was to explore adolescents and emerging adults (AEA) with spina bifida (SB) understanding of their Individualized Education Program (IEP) and to identify factors related to their knowledge about their own IEP. METHODS: Data were collected from January 2015 to July 2016 from 79 adolescents with SB. A ten-item questionnaire including demographics and questions specifically addressing IEPs was used. Qualitative analysis followed an iterative, emergent approach. Two experienced coders independently read and coded each of the three open-ended questions. It was determined that the responses of all three questions could feasibly be merged as the analysis of responses were similar. FINDINGS: This was a predominately 70 (88.7%) Hispanic sample of AEA with SB who ranged in age from 12 to 20 years (M= 15.3 years) consisting of 41 males and 38 females. All reported they have/had an IEP. Four major themes and eleven subthemes emerged from the analysis. Major themes were: The Barometer of How I Am Doing, Creating the Right Match for Learning, Obtaining the Assistance I Need, and Future Goals and Planning. CONCLUSIONS: Findings of this study reveal the IEP knowledge gaps and lack of lifestyle self-management skills AEA with SB reported pertaining to IEPs.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Educación del Paciente como Asunto , Disrafia Espinal , Transición a la Atención de Adultos , Adolescente , Niño , Femenino , Humanos , Masculino , Autoinforme , Disrafia Espinal/terapia , Adulto Joven
17.
J Urol ; 201(6): 1193-1198, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-30730412

RESUMEN

PURPOSE: The lifetime risk of renal damage in children with spina bifida is high but only limited baseline imaging data are available for this population. We evaluated a large prospective cohort of infants with spina bifida to define their baseline imaging characteristics. MATERIALS AND METHODS: The UMPIRE Protocol for Young Children with Spina Bifida is an iterative quality improvement protocol that follows a cohort of newborns at 9 United States centers. Using descriptive statistics, we report the initial baseline imaging characteristics, specifically regarding renal bladder ultrasound, cystogram and dimercaptosuccinic acid nuclear medicine scan. RESULTS: Data on 193 infants from 2015 to 2018 were analyzed. Renal-bladder ultrasound was normal in 55.9% of infants, while 40.4% had Society for Fetal Urology grade 1 to 2 hydronephrosis in at least 1 kidney, 3.7% had grade 3 to 4 hydronephrosis in either kidney and 21.8% had grade 1 or higher bilateral hydronephrosis. There was no vesicoureteral reflux in 84.6% of infants. A third of enrolled infants underwent dimercaptosuccinic acid nuclear medicine renal scan, of whom 92.4% had no renal defects and 93.9% had a difference in differential function of less than 15%. CONCLUSIONS: The majority of infants born with spina bifida have normal baseline imaging characteristics and normal urinary tract anatomy at birth. This proactive protocol offers careful scheduled surveillance of the urinary tract with the goal of lifelong maintenance of normal renal function and healthy genitourinary development.


Asunto(s)
Sistema Urinario/diagnóstico por imagen , Enfermedades Urológicas/diagnóstico por imagen , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Estudios Prospectivos , Disrafia Espinal/complicaciones , Enfermedades Urológicas/etiología
18.
Ticks Tick Borne Dis ; 10(1): 72-76, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30206012

RESUMEN

The growing risk of transmission of tick-borne zoonotic pathogens to humans in Ontario, Canada, warrants investigations into regional tick distribution, tick burdens of local peridomestic animals, and prevalence of tick-borne pathogens. The objectives of this study were to investigate the geographic distribution and magnitude of tick infestations in opportunistically sampled mammalian wildlife and companion animals (i.e., dogs) in southern Ontario and to test these ticks for evidence of zoonotic tick-borne pathogens. Ticks collected from wildlife carcasses, live-trapped wildlife and companion animals (2015-2016), as well as wildlife diagnostic cases (2011-2013), were identified to species and life stage. Ixodes scapularis ticks were tested by real-time PCR for Anaplasma phagocytophilum, Babesia microti, Borrelia miyamotoi and Borrelia burgdorferi sensu stricto (s.s.). Amblyomma americanum ticks were tested for Ehrlichia chaffeensis. A total of 1687 ticks of six species were collected from 334 animals, including 224 raccoons (n = 1381 ticks) and 50 dogs (n = 67 ticks). The most common tick species collected from parasitized raccoons were Ixodes texanus (n = 666 ticks) and Dermacentor variabilis (n = 600 ticks), which were removed from 58.5% (median: 2 ticks; range: 1-36) and 49.1% (median: 2 ticks; range: 1-64) of raccoons, respectively. Of I. scapularis tested, 9.3% (4/43) were positive for Bo. burgdorferi s.s. and 2.3% (1/43) for A. phagocytophilum. These results reveal that numerous tick species parasitize common, peridomestic wildlife and that at least two zoonotic, tick-borne pathogens circulate in southern Ontario. Host-tick vector-pathogen dynamics should continue to be monitored in the face of global climate change, landscape alterations and expanding human populations.


Asunto(s)
Animales Salvajes , Vectores Arácnidos/fisiología , Ixodidae/fisiología , Mascotas , Infestaciones por Garrapatas/veterinaria , Anaplasma phagocytophilum/aislamiento & purificación , Distribución Animal , Animales , Vectores Arácnidos/microbiología , Vectores Arácnidos/parasitología , Babesia microti/aislamiento & purificación , Borrelia/aislamiento & purificación , Enfermedades de los Perros/epidemiología , Perros , Ehrlichia chaffeensis/aislamiento & purificación , Femenino , Ixodes/crecimiento & desarrollo , Ixodes/microbiología , Ixodes/parasitología , Ixodes/fisiología , Ixodidae/microbiología , Ixodidae/parasitología , Larva/crecimiento & desarrollo , Larva/microbiología , Larva/parasitología , Larva/fisiología , Masculino , Marmota , Mephitidae , Ninfa/crecimiento & desarrollo , Ninfa/microbiología , Ninfa/parasitología , Ninfa/fisiología , Ontario/epidemiología , Prevalencia , Mapaches , Infestaciones por Garrapatas/epidemiología
19.
J Autism Dev Disord ; 48(9): 3199-3209, 2018 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-29700707

RESUMEN

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale's associations with service use may be useful to those attempting to measure or reduce ASD stigma.


Asunto(s)
Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/psicología , Padres/psicología , Percepción , Estigma Social , Trastorno del Espectro Autista/etnología , Niño , Preescolar , Composición Familiar/etnología , Femenino , Encuestas Epidemiológicas/métodos , Encuestas Epidemiológicas/normas , Hispánicos o Latinos/psicología , Humanos , Masculino , Multilingüismo , Percepción/fisiología , Población Blanca/psicología
20.
Res Autism Spectr Disord ; 51: 38-48, 2018 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-35198038

RESUMEN

Variation in parental beliefs about Autism Spectrum Disorder (ASD) may impact subsequent service use profiles. This study aimed to examine (1) variation in beliefs about ASD among English language proficient White (EP-W) mothers, English language proficient Latino (EPL) mothers, and limited English language proficient Latino (LEP-L) mothers of children with ASD; (2) variation in beliefs about ASD in the context of the child's ASD severity, among EP White mothers, EP Latino others, and LEP Latino mothers; and (3) potential links between maternal beliefs about ASD and children's current ASD treatment. This multi-site study included 305 English or Spanish-speaking parents of children with ASD, ages 2-10 years, who completed a survey about their beliefs about their child's ASD, their child's ASD severity, and treatments used by their children. Results showed that mothers in the EP-W, EP-L, and LEP-L groups differed in their beliefs about viewing ASD as a mystery. Only maternal views of ASD severity in the EP-W group were linked to their beliefs about ASD. Finally, maternal beliefs about ASD having major consequences on their child's life, and ASD being a mystery were strongly associated with a child's use of ASD intervention services. These findings provide new knowledge of how maternal beliefs about ASD vary in linguistically diverse groups, how a child's ASD severity may influence such beliefs, and how maternal beliefs correlate with the amount of therapy children with ASD receive. Future research should address how these beliefs or views are formed, what factors influence them, or whether they are malleable. Understanding parents' beliefs or views of having a child with ASD can potentially help us increase use of ASD intervention services in families of children with ASD.

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