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1.
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
2.
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
3.
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
4.
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
5.
J Urol ; 196(6): 1728-1734, 2016 12.
Artículo en Inglés | MEDLINE | ID: mdl-27475969

RESUMEN

PURPOSE: Care of children with spina bifida has significantly advanced in the last half century, resulting in gains in longevity and quality of life for affected children and caregivers. Bladder dysfunction is the norm in patients with spina bifida and may result in infection, renal scarring and chronic kidney disease. However, the optimal urological management for spina bifida related bladder dysfunction is unknown. MATERIALS AND METHODS: In 2012 the Centers for Disease Control and Prevention convened a working group composed of pediatric urologists, nephrologists, epidemiologists, methodologists, community advocates and Centers for Disease Control and Prevention personnel to develop a protocol to optimize urological care of children with spina bifida from the newborn period through age 5 years. RESULTS: An iterative quality improvement protocol was selected. In this model participating institutions agree to prospectively treat all newborns with spina bifida using a single consensus based protocol. During the 5-year study period outcomes will be routinely assessed and the protocol adjusted as needed to optimize patient and process outcomes. Primary study outcomes include urinary tract infections, renal scarring, renal function and bladder characteristics. The protocol specifies the timing and use of testing (eg ultrasonography, urodynamics) and interventions (eg intermittent catheterization, prophylactic antibiotics, antimuscarinic medications). Starting in 2014 the Centers for Disease Control and Prevention began funding 9 study sites to implement and evaluate the protocol. CONCLUSIONS: The Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida began accruing patients in 2015. Assessment in the first 5 years will focus on urinary tract infections, renal function, renal scarring and clinical process improvements.


Asunto(s)
Centers for Disease Control and Prevention, U.S. , Protocolos Clínicos/normas , Vejiga Urinaria Neurogénica/terapia , Preescolar , Humanos , Lactante , Recién Nacido , Disrafia Espinal/complicaciones , Estados Unidos , Vejiga Urinaria Neurogénica/etiología
6.
J Pediatr Nurs ; 30(5): e165-71, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-26138375

RESUMEN

PURPOSE: This study investigated the reasons adolescents with spina bifida consented or assented to participate in a randomized controlled prospective health care transition intervention study. METHODS: Sixty-five adolescents with spina bifida (SB), ages 14 to 18 years, who had previously participated in the Transition Preparation Training Program (TPT) study were recruited for the current study. A total of 26 consents/assents were obtained; a total of 25 questionnaires were returned (11 treatment; 14 control). Study findings were from a sample of 25 adolescents, aged 14 to 20 years who had participated in a randomized controlled prospective study entitled the Transition Preparation Training Program (TPT). Content analysis was used to code and analyze data. RESULTS: Study findings revealed adolescents indicated several reasons for choosing to participate in the research study. Major reasons cited for their participation were related to the desire to learn more about their condition and for altruistic purposes. Numerous reasons were offered by respondents as to why adolescents declined to participate in the research study; feelings of discomfort and issues of privacy were cited. Sixty-four percent of the respondents indicated the offer of a research incentive did not affect their decision to participate in the TPT study. Other findings are reported as to the use of research incentives and future recruitment recommendations. CONCLUSIONS: Youth shared a number of reasons and insights about recruitment strategies that may be helpful for future research efforts, especially those studies involving adolescents with special health care needs who participate in health care transition research.


Asunto(s)
Aceptación de la Atención de Salud/estadística & datos numéricos , Cooperación del Paciente/estadística & datos numéricos , Disrafia Espinal/terapia , Transición a la Atención de Adultos/organización & administración , Adolescente , Conducta del Adolescente/fisiología , Conducta del Adolescente/psicología , California , Toma de Decisiones , Femenino , Humanos , Masculino , Evaluación de Necesidades , Selección de Paciente , Estudios Prospectivos , Disrafia Espinal/diagnóstico , Adulto Joven
7.
Pediatr Nurs ; 40(4): 173-8, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-25269357

RESUMEN

PURPOSE: A pilot study was conducted to learn about the Internet usage of adolescents with spina bifida. The purpose of this study is to investigate the feasibility for developing an online health care transition intervention. METHODS: Use of the Internet was examined in a convenience sample of 50 adolescents with spina bifida in the Spina Bifida Clinic at Children's Hospital, Los Angeles. Participants were between 14 to 18 years of age. Data are reported as percentages and frequency distributions. RESULTS: Ninety-two percent of adolescents with spina bifida used the Internet, and of those, 87% used it at home, with an average rate of 2.4 hours per dat. The majority of adolescents used the Internet for homework purposes (83%). Leisure activities, such as listening to music (76%), playing games (70%), meeting new friends/social networking (63%), and watching YouTube videos (61%), were also reported. Most participants have never used the Internet to obtain spina bifida information (67%) or to meet other adolescents with spina bifida (85%). CONCLUSION: Internet application as an outreach tool for education and transition planning should be further explored in future studies. Given the widespread reported access to the Internet among our participants, results suggest that a Web-based outreach tool for education and health care transition planning have the potential to be accessible and beneficial to adolescents with spina bifida with the facilitated support of health care professionals.


Asunto(s)
Internet/estadística & datos numéricos , Disrafia Espinal/psicología , Adolescente , Femenino , Humanos , Los Angeles , Masculino , Proyectos Piloto , Encuestas y Cuestionarios
8.
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.

9.
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
10.
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.

11.
Biochim Biophys Acta ; 1808(6): 1611-7, 2011 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-21376014

RESUMEN

The lipophilic dye merocyanine 540 (MC540) was used to model small molecule-membrane interactions using micropatterned lipid bilayer arrays (MLBAs) prepared using a 3D Continuous Flow Microspotter (CFM). Fluorescence microscopy was used to monitor MC540 binding to fifteen different bilayer compositions simultaneously. MC540 fluorescence was two times greater for bilayers composed of liquid-crystalline (l.c.) phase lipids (1,2-dimyristoyl-sn-glycero-3-phosphocholine (DMPC), 1,2-dioleoyl-sn-glycero-3-phosphocholine (DOPC),1-stearoyl-2-oleoyl-sn-glycero-3-phosphocholine (SOPC), and 1-palmitoyl-2-oleoyl-sn-glycero-3-phosphocholine (POPC)) compared to bilayers in the gel phase (1,2-dipalmitoyl-sn-glycero-3-phosphocholine (DPPC) and 1,2-distearoyl-sn-glycero-3-phosphocholine (DSPC)). The effect cholesterol (CHO) had on MC540 binding to the membrane was found to be dependent on the lipid component; cholesterol decreased MC540 binding in DMPC, DPPC and DSPC bilayers while having little to no effect on the remaining l.c. phase lipids. MC540 fluorescence was also lowered when 1,2-dioleoyl-sn-glycero-3-phospho-L-serine (sodium salt) (DOPS) was incorporated into DOPC bilayers. The increase in the surface charge density appears to decrease the occurrence of highly fluorescent monomers and increase the formation of weakly fluorescent dimers via electrostatic repulsion. This paper demonstrates that MLBAs are a useful tool for preparing high density reproducible bilayer arrays to study small molecule-membrane interactions in a high-throughput manner.


Asunto(s)
Membrana Celular/química , Membrana Dobles de Lípidos/química , Análisis por Micromatrices/métodos , Pirimidinonas/química , 1,2-Dipalmitoilfosfatidilcolina/química , 1,2-Dipalmitoilfosfatidilcolina/metabolismo , Algoritmos , Unión Competitiva , Membrana Celular/metabolismo , Clorobencenos/química , Clorobencenos/metabolismo , Colesterol/química , Colesterol/metabolismo , Dimiristoilfosfatidilcolina/química , Dimiristoilfosfatidilcolina/metabolismo , Geles/química , Cinética , Membrana Dobles de Lípidos/metabolismo , Microscopía Fluorescente , Estructura Molecular , Transición de Fase , Fosfatidilcolinas/química , Fosfatidilcolinas/metabolismo , Pirimidinonas/metabolismo , Reproducibilidad de los Resultados , Espectrometría de Fluorescencia
12.
Anal Chem ; 84(19): 8122-6, 2012 Oct 02.
Artículo en Inglés | MEDLINE | ID: mdl-22947074

RESUMEN

Given the complexity of cell membranes, there is a need for an analytical technique which can explore the physical properties of lipid membranes in a high-throughput and noninvasive manner. A simplified sum-frequency vibrational imaging (SFVI) setup has been developed and characterized using asymmetrically prepared 1,2-distearoyl-sn-glycero-3-phosphocholine (DSPC):1,2-distearoyl(d70)-sn-glycero-3-phosphocholine (DSPC-d(70)) lipid bilayer arrays. Exploiting the vibrational selectivity and inherent symmetry constraints of sum-frequency generation, SFVI was successfully used to probe the transition temperature of a patterned DSPC:DSPC-d(70) lipid bilayer array. SFVI was also used to study the phase behavior in a multicomponent micropatterned lipid bilayer array (MLBA) prepared using three different binary lipid mixtures (1,2-dioleoyl-sn-glycero-3-phosphocholine (DOPC):DSPC, DOPC:1,2-dipalmitoyl-sn-glycero-3-phosphocholine (DPPC), and 1,2-dimyristoyl-sn-glycero-3-phosphocholine (DMPC:DSPC). This paper demonstrates that a simplified SFVI setup provides the necessary chemical imaging capabilities with the spatial resolution, sensitivity, and field of view required for exploring lipid membrane properties in a high-throughput array based assay.


Asunto(s)
Rayos Láser , Membrana Dobles de Lípidos/química , Vibración , Espectrofotometría Infrarroja
13.
J Nurs Educ ; 51(12): 676, 2012 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-23359899

RESUMEN

A survey study was conducted to investigate the admission and accommodation policies of nursing programs for students with disabilities. Surveys were sent to 130 Board of Registered Nursing­approved nursing programs throughout California. Sixty-five (50%) of the surveys were returned and completed. Of the major findings of the study, learning disabilities were the most common type of disability reported. Testing time accommodations and a quiet environment were the most frequently requested and received accommodations. Seventy-two percent of nursing programs reported they have encountered students with disabilities who do not self-disclose or ask for accommodations. Most accommodations requested and received by students were classroom related. Few students with physical disabilities were reported as enrolled in nursing programs, possibly suggesting that prospective students with physical disabilities may not meet the physical requirements for nursing programs. Other reasons for underenrollment of students with disabilities should be explored, as well as reasons for nondisclosure.


Asunto(s)
Personas con Discapacidad , Bachillerato en Enfermería , Estudiantes de Enfermería , Adulto , California , Femenino , Humanos , Masculino , Política Organizacional , Criterios de Admisión Escolar , Encuestas y Cuestionarios
14.
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
15.
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
16.
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
17.
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
18.
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
19.
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.

20.
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
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