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BACKGROUND: Individuals of minority race/ethnicity have lower rates of participation in genomic research. This study evaluated sociodemographic characteristics associated with decisions to enroll in a pediatric critical care biorepository. METHODS: Parents of children admitted to the PICU between November 2014 and May 2017 were offered to enroll their child in a biorepository using a single-page opt-in consent. Missed enrollment was assessed by failure to complete the form or declining consent on the form. We conducted a retrospective chart review for sociodemographic and clinical information. Bivariate and multivariable regression analyses were performed. RESULTS: In 4055 encounters, representing 2910 patients with complete data, 1480 (50%) completed the consent form and 1223 (83%) enrolled. We found higher odds of incomplete consent for non-English-speaking parents (OR = 2.1, p < 0.0001) and parents of children of all races except non-Hispanic white (OR = 1.27-1.99, p < 0.0001). We found higher odds of declined consent in patients with Medicaid (OR = 1.67, p = 0.003) and parents of children of all races except non-Hispanic white (OR = 1.32-2.9, p < 0.0001). CONCLUSION: Inability to enroll patients in a critical care biorepository may be associated with several sociodemographic factors at various points in recruitment/enrollment. IMPACT: Individuals of minority race/ethnicity are less likely to enroll in genomic research and in critical care research. This study evaluated sociodemographic characteristics associated with decisions to enroll a child in a pediatric critical care biorepository. Sociodemographic factors including race/ethnicity, primary language, and insurance status and patient clinical characteristics are associated with differential enrollment into a pediatric critical care biorepository. More research is needed to understand how study team-participant interactions may play a role in differential enrollment. Barriers to enrollment occur both at the time of approaching and consenting for enrollment.
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Formularios de Consentimiento , Etnicidad , Estados Unidos , Niño , Humanos , Estudios Retrospectivos , Grupos Minoritarios , Cuidados CríticosRESUMEN
PURPOSE: This study investigates the feasibility of ultrafast fluid sensitive techniques for evaluation of pediatric spinal cord syrinx. Rapid imaging could obviate the need for sedation, which is often required for children undergoing lengthier standard spine imaging. METHODS: Children undergoing standard spine imaging for Chiari malformation, suspected Chiari malformation, or syrinx were included. Patients who provided informed consent were imaged with rapid acquisition sagittal and axial T2 HASTE spine sequences in addition to standard spine imaging. Standard and rapid spine imaging were then reviewed separately by a pediatric neuroradiologist. The presence or absence of syrinx, syrinx diameter, and length were assessed. The degree of cerebellar tonsillar ectopia, conus position, and evaluation of the filum were also recorded. RESULTS: Seventy-six patients aged 1 month to 18 years (mean 7 years) met the inclusion criteria. The sensitivity and specificity of rapid spine imaging for syrinx was 87.8% and 94.7% respectively. All syrinxes > 2.3 mm in diameter were identified with the rapid spine sequences. There was no statistically significant difference between rapid and standard spine imaging in assessment of syrinx diameter or length. Compared with standard spine imaging, rapid spine sequences demonstrated a 100% sensitivity for low-lying conus and a 98.2% sensitivity for cerebellar tonsillar ectopia. The filum was identified on only 31.6% of the rapid spine studies. CONCLUSION: Rapid T2 imaging demonstrated a high sensitivity for the presence and extent of spinal cord syrinx and may provide an alternative to traditional, lengthier standard spine imaging in selected patients.
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Malformación de Arnold-Chiari , Siringomielia , Malformación de Arnold-Chiari/patología , Niño , Estudios de Factibilidad , Humanos , Imagen por Resonancia Magnética , Espectroscopía de Resonancia Magnética , Estudios Retrospectivos , Médula Espinal/diagnóstico por imagen , Médula Espinal/patología , Siringomielia/diagnóstico por imagenRESUMEN
BACKGROUND: Ideal "cardiovascular health" (CVH)-optimal diet, exercise, nonsmoking, BMI, BP, lipids, and glucose-is associated with healthy longevity in adults. Pediatric heart transplant (HT) patients may be at risk for suboptimal CVH. METHODS: Single-center retrospective study of HT patients 2003-2014 who survived 1 year post-transplant. Five CVH metrics were collected at listing, 1, 3 and 5 years post-transplant (diet and exercise were unavailable). CVH was scored by summing individual metrics: ideal = 2, intermediate = 1, and poor = 0 points; total scores of 8-10 points were considered high (favorable). CVH was compared between HT patients and the US pediatric population (GP) utilizing NHANES 2007-2016. Logistic regression was performed to examine the association of CVH 1 year post-transplant with a composite adverse outcome (death, re-listing, coronary vasculopathy, or chronic kidney disease) 3 years post-transplant. RESULTS: We included 110 HT patients (median age at HT: 6 years [range 0.1-21]) and 19,081 NHANES participants. CVH scores among HT patients were generally high at listing (75%), 1 (74%), 3 (87%) and 5 (76%) years post-transplant and similar to GP, but some metrics (e.g., glucose) were worse among HT patients. Among HT patients, CVH was poorer with older age and non-Caucasian race/ethnicity. Per 1-point higher CVH score, the demographic-adjusted OR for adverse outcomes was 0.95 (95% CI, 0.7-1.4). CONCLUSIONS: HT patients had generally favorable CVH, but some metrics were unfavorable and CVH varied by age and race/ethnicity. No significant association was detected between CVH and adverse outcomes in this small sample, but study in a larger sample is warranted.
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Enfermedades Cardiovasculares , Trasplante de Corazón , Adolescente , Adulto , Enfermedades Cardiovasculares/epidemiología , Niño , Preescolar , Estudios Transversales , Trasplante de Corazón/efectos adversos , Humanos , Lactante , Encuestas Nutricionales , Estudios Retrospectivos , Factores de Riesgo , Adulto JovenRESUMEN
OBJECTIVES: We sought to describe the prevalence of midazolam treatment failure in children with refractory status epilepticus (RSE) and define a threshold dose associated with diminishing frequency of seizure cessation. DESIGN: Single center retrospective cohort study. SETTING: Single-center, quaternary-care PICU. PATIENTS: Children younger than 18 years old admitted to the PICU from 2009 to 2018 who had RSE requiring a continuous midazolam infusion. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We identified individuals with RSE through a data analytics inquiry. Receiver operating characteristic (ROC) curve analysis and Youden's index were used to assess the midazolam dose threshold associated with the highest sensitivity and specificity in identifying seizure cessation. A logistic regression model was used to determine if there was an association between maximum midazolam dose and seizure cessation. Of the 45 patients who met inclusion criteria for this study, 27 (60%) had seizure cessation with a midazolam infusion, whereas 18 (40%) required an additional pentobarbital infusion for seizure cessation. There was an association between maximum midazolam dose and seizure cessation, with patients more likely to fail treatment when midazolam was administered at higher doses. The maximum midazolam dose displayed high area under the ROC curve value for seizure cessation, and the Youden's J index cut-off point was 525 µg/kg/hr. Treatment above this dose was associated with diminishing frequency of seizure cessation. The median time spent titrating midazolam above 500 µg/kg/hr for those patients who required pentobarbital for seizure cessation was 3.83 hours (interquartile range, 2.28-5.58 hr). CONCLUSIONS: In pediatric patients with RSE requiring high dose midazolam, considerable time is spent titrating doses in a range (above 500 µg/kg/hr) that is associated with diminishing frequency of seizure cessation.
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Midazolam , Estado Epiléptico , Niño , Humanos , Adolescente , Estudios Retrospectivos , Pentobarbital/uso terapéutico , Anticonvulsivantes/uso terapéutico , Estado Epiléptico/tratamiento farmacológicoRESUMEN
OBJECTIVE: This study aimed to establish the degree of variability in thresholds for discussing withdrawal of life-sustaining therapies (WLST) in periviable infants among neonatal intensive care unit (NICU) personnel. STUDY DESIGN: A vignette-style survey was administered to NICU personnel at two urban NICUs assessing likelihood of discussing WLST or support for discussing WLST (on a scale from 1, not at all likely/supportive to 10, extremely likely/supportive) in 10 clinical scenarios. RESULTS: Response rates ranged by clinical role from 26 to 89%. Participant responses ranged from 1 to 10 in 5 out of 10 vignettes for NICU attendings, and 9 out of 10 vignettes for bedside nurses. Lower gestational age (22-23 vs. 24-25 weeks) was associated with increased likelihood to discuss WLST in some but not all scenarios. CONCLUSION: NICU personnel have widely variable criteria for discussing WLST which threatens the informed consent process surrounding resuscitation decisions in a "trial of therapy" framework. KEY POINTS: · NICU personnel have variable criteria for WLST.. · Parents have little say in whether WLST is offered.. · Disclosure of variable criteria is not routine..
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ABSTRACT: Many patients with cleft palate in developing countries never receive postoperative speech assessment or therapy. The use of audiovisual recordings could improve access to post-repair speech care. The present study evaluated whether English-speaking speech-language pathologists (SLPs) could assess cleft palate patients speaking an unfamiliar language (Tamil) using recorded media. Recordings obtained from Tamil-speaking participants were rated by 1 Tamil-speaking SLP and 3 English-speaking SLPs. Ratings were analyzed for inter-rater reliability and scored for percent correct. Accuracy of the English SLPs was compared with independent t tests and Analysis of Variance. Sixteen participants (mean age 14.5 years, standard deviation [SD] 7.4 years; mean age of surgery of 2.7 years, SD 3.7 years; time since surgery: 10.8 years, SD 5.7 years) were evaluated. Across the 4 SLPs, 5 speech elements were found to have moderate agreement, and the mean kappa was 0.145 (slight agreement). Amongst the English-speaking SLPs, 10 speech elements were found to have substantial or moderate agreement, and the mean kappa was 0.333 (fair agreement). Speech measures with the highest inter-rater reliability were hypernasality and consonant production errors. The average percent correct of the English SLPs was 60.7% (SD 20.2%). English SLPs were more accurate if the participant was female, under eighteen, bilingual, or had speech therapy. The results demonstrate that English SLPs without training in a specific language (Tamil) have limited potential to assess speech elements accurately. This research could guide training interventions to augment the ability of SLPs to conduct cross-linguistic evaluations and improve international cleft care by global health teams.
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Fisura del Paladar , Adolescente , Preescolar , Fisura del Paladar/cirugía , Estudios de Factibilidad , Femenino , Humanos , India , Lingüística , Reproducibilidad de los Resultados , HablaRESUMEN
PURPOSE: We identified the incidence of acquired cryptorchidism among patients with proximal and mid shaft hypospadias, predictors of acquired cryptorchidism, and the prevalence of testis-epididymis nonfusion with ascended testes. We hypothesized that proximal hypospadias would be associated with higher incidence of acquired cryptorchidism than mid shaft hypospadias, and that ascended testes would exhibit increased prevalence of testis-epididymis nonfusion similar to anatomical findings in an undescended testis. MATERIALS AND METHODS: A retrospective cohort study of patients who underwent primary proximal and mid shaft hypospadias repair from 2010 to 2016 was conducted. Clinical and operative notes were reviewed. Patients with congenitally undescended testes or differences of sex development were excluded. RESULTS: A total of 175 patients were identified. Those with proximal hypospadias (14/104, 13%) were more likely than those with mid shaft hypospadias (1/71, 1%) to develop acquired cryptorchidism (p=0.04). Among proximal hypospadias patients, increased risk of acquired cryptorchidism was associated with pre-term birth (p <0.01) and penoscrotal transposition (p=0.01) but not with testis position on initial examination (p >0.99). In the 14 proximal hypospadias patients with acquired cryptorchidism, 21 ascended testes underwent orchiopexy. Operative notes adequately described testis-epididymis anatomy for 8/21 ascended testes. Testis-epididymis nonfusion was described in 6/8 ascended testes. CONCLUSIONS: Risk of acquired cryptorchidism is increased among patients with proximal hypospadias. Operative notes revealed a high rate of epididymal nonfusion with ascended testes, suggesting these testes morphologically resemble undescended testes. Close followup of testis position is needed in these patients, and the threshold to perform orchiopexy may need to be lower in select patients.
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Criptorquidismo/epidemiología , Hipospadias/cirugía , Orquidopexia/estadística & datos numéricos , Niño , Preescolar , Criptorquidismo/etiología , Criptorquidismo/cirugía , Estudios de Seguimiento , Humanos , Hipospadias/complicaciones , Incidencia , Lactante , Recién Nacido , Masculino , Estudios RetrospectivosRESUMEN
BACKGROUND: Cardiac evaluations, including cardiovascular magnetic resonance (CMR) imaging and biomarker results, are needed in children during mid-term recovery after infection with SARS-CoV-2. The incidence of CMR abnormalities 1-3 months after recovery is over 50% in older adults and has ranged between 1 and 15% in college athletes. Abnormal cardiac biomarkers are common in adults, even during recovery. METHODS: We performed CMR imaging in a prospectively-recruited pediatric cohort recovered from COVID-19 and multisystem inflammatory syndrome in children (MIS-C). We obtained CMR data and serum biomarkers. We compared these results to age-matched control patients, imaged prior to the SARS-CoV-2 pandemic. RESULTS: CMR was performed in 17 children (13.9 years, all ≤ 18 years) and 29 age-matched control patients without SARS-CoV-2 infection. Cases were recruited with symptomatic COVID-19 (11/17, 65%) or MIS-C (6/17, 35%) and studied an average of 2 months after diagnosis. All COVID-19 patients had been symptomatic with fever (73%), vomiting/diarrhea (64%), or breathing difficulty (55%) during infection. Left ventricular and right ventricular ejection fractions were indistinguishable between cases and controls (p = 0.66 and 0.70, respectively). Mean native global T1, global T2 values and segmental T2 maximum values were also not statistically different from control patients (p ≥ 0.06 for each). NT-proBNP and troponin levels were normal in all children. CONCLUSIONS: Children prospectively recruited following SARS-CoV-2 infection had normal CMR and cardiac biomarker evaluations during mid-term recovery. Trial Registration Not applicable.
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COVID-19/complicaciones , Corazón/diagnóstico por imagen , Corazón/fisiología , Imagen por Resonancia Magnética/métodos , Síndrome de Respuesta Inflamatoria Sistémica/complicaciones , Adolescente , Biomarcadores/sangre , COVID-19/sangre , Niño , Femenino , Humanos , Masculino , Estudios Prospectivos , SARS-CoV-2 , Síndrome de Respuesta Inflamatoria Sistémica/sangreRESUMEN
OBJECTIVES: Parents value clear communication with PICU clinicians about possible patient and family outcomes (prognostic conversations). We describe PICU parent and attending physician reports and agreement regarding the occurrence of prognostic conversations. We queried parents and physicians about prognostic conversation content, which healthcare providers had prognostic conversations, and whether parents wanted more prognostic information. DESIGN: Prospective cross-sectional survey study. SETTING: University-based 40-bed PICU. PARTICIPANTS: Parents and attending physicians of PICU patients with multiple organ dysfunction within 24 hours of PICU admission. INTERVENTIONS: Surveys administered to parents and attending PICU physicians 5-10 days after PICU admission. MEASUREMENTS AND MAIN RESULTS: Surveys asked parents and physicians to report the occurrence of prognostic conversations related to PICU length of stay, risk of PICU mortality, and anticipated post-PICU physical, neurologic, and psychologic morbidities for patients and post-PICU psychologic morbidities for parents. Of 101 participants, 87 parents and 83 physicians reported having prognostic conversations. Overall concordance between parents and physicians was fair (Kappa = 0.22). Parents and physicians most commonly reported prognostic conversations about PICU length of stay (67.3% and 63.3%, respectively) and patient post-PICU physical morbidity (n = 48; 48.5% and n = 45; 44.5% respectively). Conversations reported less often by parents and physicians were about patient post-PICU psychologic morbidity (n = 13; 12.9% and n = 20; 19.8%, respectively). Per parent report, bedside nurses and physicians provided most prognostic information. Chaplains (n = 14; 50%) and social workers (n = 17; 60%) were more involved in conversations regarding parent psychologic morbidities. Most commonly, parents requested more information about length of stay and their child's physical morbidities. Parents less frequently wanted information about their own psychologic morbidities. CONCLUSIONS: Most parents and physicians report having prognostic conversations, primarily about length of stay and post-ICU physical morbidities. Concordance between parents and physicians is suboptimal. Future studies should evaluate prognostic conversations at other timepoints, how information is delivered, and how these conversations impact the PICU experience.
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Enfermedad Crítica , Médicos , Niño , Estudios Transversales , Humanos , Unidades de Cuidado Intensivo Pediátrico , Pronóstico , Estudios ProspectivosRESUMEN
The goal of this work was to examine the change in health-related quality of life (HRQOL) and cognitive functioning from early childhood to adolescence in pediatric liver transplantation (LT) recipients. Patients were recruited from 8 North American centers through the Studies of Pediatric Liver Transplantation consortium. A total of 79 participants, ages 11-18 years, previously tested at age 5-6 years in the Functional Outcomes Group study were identified as surviving most recent LT by 2 years and in stable medical follow-up. The Pediatric Quality of Life 4.0 Generic Core Scale, Pediatric Quality of Life Cognitive Function Scale, and PROMIS Pediatric Cognitive Function tool were distributed to families electronically. Data were analyzed using repeated measures and paired t tests. Predictive variables were analyzed using univariate regression analysis. Of the 69 families contacted, 65 (94.2%) parents and 61 (88.4%) children completed surveys. Median age of participants was 16.1 years (range, 12.9-18.0 years), 55.4% were female, 33.8% were nonwhite, and 84.0% of primary caregivers had received at least some college education. Median age at LT was 1.1 years (range, 0.1-4.8 years). The majority of participants (86.2%) were not hospitalized in the last year. According to parents, adolescents had worse HRQOL and cognitive functioning compared with healthy children in all domains. Adolescents reported HRQOL similar to healthy children in all domains except psychosocial, school, and cognitive functioning (P = 0.02; P < 0.001; P = 0.04). Participants showed no improvement in HRQOL or cognitive functioning over time. For cognitive and school functioning, 60.0% and 50.8% of parents reported "poor" functioning, respectively (>1 standard deviation below the healthy mean). Deficits in HRQOL seem to persist in adolescence. Over half of adolescent LT recipients appear to be at risk for poor school and cognitive functioning, likely reflecting attention and executive function deficits.
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Trasplante de Hígado , Calidad de Vida , Adolescente , Niño , Preescolar , Cognición , Femenino , Estado de Salud , Humanos , Lactante , Trasplante de Hígado/efectos adversos , Masculino , Encuestas y CuestionariosRESUMEN
OBJECTIVES: Acute-on-chronic liver failure (ACLF) is well-studied in adults and characterized by decompensated cirrhosis, multi-organ failure, and early mortality. Studies of ACLF in children are limited. We sought to characterize the prevalence and clinical factors associated with pediatric ACLF (PACLF). METHODS: A retrospective review of children 3 months to 18 years listed for liver transplantation and hospitalized for decompensated cirrhosis between January 2007 and December 2017 at a single pediatric hospital. Primary outcome was the development of PACLF, characterized as failure of at least 1 extrahepatic organ (mechanical ventilation, renal replacement therapy, vasoactive medications, grade III/IV hepatic encephalopathy). Characteristics were recorded for each hospitalization. RESULTS: Sixty-six patients had 186 hospitalizations with mean age at admission 4.0â±â5.6 years and diagnosis of biliary atresia (BA) in 65%. PACLF developed in 20 patients during 23 hospitalizations (12%) and respiratory failure was most common (17/23, 74%). Duration of intensive care unit stay, 13.1â±â1.2 days versus 0.6â±â0.6 days (Pâ<â0.001) and length of stay, 24.3â±â5.0 days versus 7.9â±â1.9 days (Pâ=â0.003) were longer in PACLF compared with non-PACLF. Mortality during PACLF hospitalizations was 22%. Clinical factors associated with PACLF were reported from a generalized linear mixed model and included increased admission creatinine (Pâ<â0.0001), increased aspartate aminotransferase (AST) (Pâ=â0.014), increased international normalized ration (INR) (Pâ=â0.0015), and a positive blood culture (Pâ=â0.007). CONCLUSION: In this pediatric series, PACLF developed in 12% of hospitalizations and mortality was high. Admission creatinine, AST, INR, and presence of a positive blood culture were associated with PACLF development.
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Insuficiencia Hepática Crónica Agudizada/etiología , Atresia Biliar , Enfermedad Hepática en Estado Terminal , Hígado/patología , Admisión del Paciente , Insuficiencia Respiratoria , Insuficiencia Hepática Crónica Agudizada/sangre , Insuficiencia Hepática Crónica Agudizada/diagnóstico , Insuficiencia Hepática Crónica Agudizada/epidemiología , Aspartato Aminotransferasas/sangre , Atresia Biliar/complicaciones , Atresia Biliar/epidemiología , Niño , Preescolar , Creatinina/sangre , Enfermedad Hepática en Estado Terminal/complicaciones , Enfermedad Hepática en Estado Terminal/epidemiología , Enfermedad Hepática en Estado Terminal/patología , Femenino , Mortalidad Hospitalaria , Hospitalización , Humanos , Lactante , Unidades de Cuidados Intensivos , Relación Normalizada Internacional , Tiempo de Internación , Hígado/metabolismo , Cirrosis Hepática , Masculino , Insuficiencia Multiorgánica/epidemiología , Insuficiencia Multiorgánica/etiología , Pronóstico , Insuficiencia Respiratoria/epidemiología , Insuficiencia Respiratoria/etiología , Estudios Retrospectivos , Factores de RiesgoRESUMEN
OBJECTIVE: To determine whether parental resilience, measured at ICU admission, is associated with parent-reported symptoms of depression, anxiety, posttraumatic stress, and satisfaction with ICU care 3-5 weeks following ICU discharge. DESIGN: Planned prospective, observational study nested in a randomized comparative trial. SETTING: PICUs and cardiac ICUs in two, free-standing metropolitan area children's hospitals. PARTICIPANTS: English- and Spanish-speaking parents whose children were younger than 18 years old and had anticipated ICU stay of greater than 24 hours or Pediatric Index of Mortality score of greater than or equal to 4 at the time of consent. All ICU admissions were screened for inclusion. Of 4,251 admissions reviewed, 1,360 were eligible. Five hundred families were approached and 382 enrolled. Two hundred thirty-two parents from 210 families with complete data were included in analysis. INTERVENTIONS: All participating parents completed the Connor-Davidson Resilience Scale at the time of consent and outcome measures 3-5 weeks after ICU discharge. MEASUREMENTS AND MAIN RESULTS: All parents completed the Patient-Reported Outcome Measurement Information System Short Forms 8a for Depression and Anxiety, Impact of Event Scale-Revised for posttraumatic stress, and Pediatric Family Satisfaction-ICU 24 for parental satisfaction 3-5 weeks after ICU discharge. Higher parental resilience was associated with fewer symptoms of depression, anxiety, and posttraumatic stress in the final model (all p < 0.0001). Shorter length of stay, early mechanical ventilation, Latino ethnicity, and lower illness severity (both objective and parental perceptions) were associated with less morbidity in some or all measured mental health outcomes. CONCLUSIONS: Higher parental resilience is associated with fewer reported symptoms of anxiety, depression, and posttraumatic stress 3-5 weeks after ICU discharge. Parental resilience may impact parental post-ICU psychological morbidity. Measuring parental resilience could be one approach to identify parents at risk for post-ICU psychological morbidity. Future research into the impact of interventions designed to boost parental resilience is warranted.
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Ansiedad , Enfermedad Crítica , Adolescente , Ansiedad/epidemiología , Niño , Humanos , Unidades de Cuidados Intensivos , Morbilidad , Padres , Estudios ProspectivosRESUMEN
OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared parent-reported outcomes from parents receiving a navigator-based parent support intervention (PICU Supports) with those from parents receiving an informational brochure. DESIGN: Patient-level, randomized trial. SETTING: Two university-based, tertiary-care children's hospital PICUs. PARTICIPANTS: Parents of patients requiring more than 24 hours in the PICU. INTERVENTIONS: PICU Supports included adding a trained navigator to the patient's healthcare team. Trained navigators met with parents and team members to assess and address communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and did a post-PICU discharge parent check-in. The comparator arm received an informational brochure providing information about PICU procedures, terms, and healthcare providers. MEASUREMENTS AND MAIN RESULTS: The primary outcome was percentage of "excellent" responses to the Pediatric Family Satisfaction in the ICU 24 decision-making domain obtained 3-5 weeks following PICU discharge. Secondary outcomes included parental psychologic and physical morbidity and perceptions of team communication. We enrolled 382 families: 190 received PICU Supports, and 192 received the brochure. Fifty-seven percent (216/382) completed the 3-5 weeks post-PICU discharge survey. The mean percentage of excellent responses to the Pediatric Family Satisfaction in the ICU 24 decision-making items was 60.4% for PICU Supports versus 56.1% for the brochure (estimate, 3.57; SE, 4.53; 95% CI, -5.77 to 12.90; p = 0.44). Differences in secondary outcomes were not statistically significant. Most parents (91.1%; 113/124) described PICU Supports as "extremely" or "somewhat" helpful. CONCLUSIONS: Parents who received PICU Supports rated the intervention positively. Differences in decision-making satisfaction scores between those receiving PICU Supports and a brochure were not statistically significant. Interventions like PICU Supports should be evaluated in larger studies employing enhanced recruitment and retention of subjects.
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Unidades de Cuidado Intensivo Pediátrico , Cuidado Terminal , Niño , Comunicación , Humanos , Padres , Satisfacción PersonalRESUMEN
BACKGROUND: Pupillary evaluation is a crucial element of physical exams. Noting size, reactivity, and consensual response is critical in assessing for optic nerve dysfunction. We aim to establish normative data for scotopic pupillary size and function in the pediatric population in a clinical setting. METHODS: Pupillometry was obtained prospectively for consecutive, normal patients < 18 years old being evaluated by Lurie Children's Ophthalmology. Quantitative data included maximum (MAX) and minimum (MIN) diameters, constriction percentage (CON), latency (LAT), average (ACV) and maximum (MCV) constriction velocities, average dilation velocity (ADV), and 75% recovery time (T75). Iris color was noted as light, intermediate, or dark. RESULTS: 196 eyes of 101 participants (42.6% male, ages 1-17 years, average age 10.3 years) were analyzed. Mean MAX was 6.6 mm (5.1-8.1 mm 95% CI); MIN was 4.7 mm (3.1-6.1 mm 95% CI); CON was 30% (17-42 95% CI); LAT was 230 milliseconds (160-300 ms 95% CI); ACV was 3.70 mm/sec (2.21-5.18 mm/sec 95% CI); and ADV was 0.88 mm/sec (0.38-1.38 mm/sec 95% CI). Age had a positive correlation with MAX, MIN, and CON. 84.2 and 95.8% of participants showed resting pupil asymmetry of ≤0.5 mm and ≤ 1.0 mm, respectively. CONCLUSIONS: Quantitative pupillometry can be a useful tool for screening pediatric patients. We sought to establish normative data in this group. We found males to have significantly greater MCV and CON than females (p < 0.05). Also, age had a positive correlation with MAX, MIN, and CON.
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Iris/anatomía & histología , Pupila/fisiología , Reflejo Pupilar/fisiología , Adolescente , Niño , Preescolar , Bases de Datos Factuales , Técnicas de Diagnóstico Oftalmológico/instrumentación , Color del Ojo/fisiología , Femenino , Humanos , Lactante , Luz , Masculino , Visión Nocturna/fisiología , Distribución Normal , Examen Físico , Estudios ProspectivosRESUMEN
OBJECTIVE: Prior studies suggest diabetes camps improve psychosocial well-being in youth with type 1 diabetes but these studies suffer from variable levels of rigor. The present study assessed associations between camp participation and diabetes distress, perceived independence in diabetes self-care, and diabetes strengths in a large sample of children, adolescents, and their parents across 44 camps in the United States. Analyses compared viewpoints of study participants, identified moderators of change, and assessed perceived benefits of camp participation. METHODS: There were 2488 youth and 2563 parents consented for participation in the online survey. Participants reported diabetes distress and perceived independence in youth care, their new experiences and best parts of camp, and changes in behavior following camp. T-tests, regressions, Cohen's d, and relative frequencies were used as appropriate to assess baseline differences between reporters, pre-post outcome differences, and moderators of change. RESULTS: Parents as compared to youth reported higher pre-camp distress and lower perception of youth independence in self-care. Youth experienced a statistically significant decrease in distress and increase in independence in self-care. Diabetes strengths did not change. Higher A1c prior to camp was associated with higher levels of distress across camp participation. Campers and their parents endorsed a high frequency of positive firsts, bests, and benefits of camp. CONCLUSIONS: Data from a large sample youth with type 1 diabetes across multiple camps showed broad-based psychosocial benefits of camp participation.
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Acampada , Diabetes Mellitus Tipo 1/epidemiología , Diabetes Mellitus Tipo 1/psicología , Autocuidado , Autoeficacia , Estrés Psicológico/epidemiología , Adaptación Psicológica/fisiología , Adolescente , Actitud Frente a la Salud , Niño , Diabetes Mellitus Tipo 1/terapia , Progresión de la Enfermedad , Femenino , Humanos , Masculino , Grupo Paritario , Percepción/fisiología , Autocuidado/psicología , Autocuidado/estadística & datos numéricos , Estrés Psicológico/psicología , Encuestas y Cuestionarios , Estados Unidos/epidemiologíaRESUMEN
BACKGROUND: Multiple studies in adult patients suggest that tissue mapping performed by cardiovascular magnetic resonance (CMR) has excellent diagnostic accuracy in acute myocarditis, however, these techniques have not been studied in depth in children. METHODS: CMR data on 23 consecutive pediatric patients from 2014 to 2017 with a clinical diagnosis of acute myocarditis were retrospectively analyzed and compared to 39 healthy controls. The CMR protocol included native T1, T2, and extracellular volume fraction (ECV) in addition to standard Lake Louise Criteria (LLC) parameters on a 1.5 T scanner. RESULTS: Mean global values for novel mapping parameters were significantly elevated in patients with clinically suspected acute myocarditis compared to controls, with native T1 1098 ± 77 vs 990 ± 34 ms, T2 52.8 ± 4.6 ms vs 46.7 ± 2.6 ms, and ECV 29.8 ± 5.1% vs 23.3 ± 2.6% (all p-values < 0.001). Ideal cutoff values were generated using corresponding ROC curves and were for global T1 1015 ms (AUC 0.936, sensitivity 91%, specificity 86%), for global T2 48.5 ms (AUC 0.908, sensitivity 91%, specificity 74%); and for ECV 25.9% (AUC 0.918, sensitivity 86%, specificity 89%). While the diagnostic yield of the LLC was 57% (13/23) in our patient cohort, 70% (7/10) of patients missed by the LLC demonstrated abnormalities across all three global mapping parameters (native T1, T2, and ECV) and another 20% (2/10) of patients demonstrated at least one abnormal mapping value. CONCLUSIONS: Similar to findings in adults, pediatric patients with acute myocarditis demonstrate abnormal CMR tissue mapping values compared to controls. Furthermore, we found CMR parametric mapping techniques measurably increased CMR diagnostic yield when compared with conventional LLC alone, providing additional sensitivity and specificity compared to historical references. Routine integration of these techniques into imaging protocols may aid diagnosis in children.
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Imagen por Resonancia Cinemagnética , Miocarditis/diagnóstico por imagen , Enfermedad Aguda , Adolescente , Factores de Edad , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Valor Predictivo de las Pruebas , Reproducibilidad de los Resultados , Estudios RetrospectivosRESUMEN
OBJECTIVE: Children with type 1 diabetes and their parents face daily self-care demands, leading to diabetes-specific emotional distress. A standardized measure of diabetes distress can guide clinical care and prevent negative outcomes. METHODS: This study evaluated the psychometric properties of child- and parent-report measures of the Problem Areas in Diabetes Scale, adapted for children ages 8-12 (PAID-C) and their parents (P-PAID-C). Participants were from 42 diabetes camps in the United States. Children (N = 804; mean age = 10.3 ± 1.1) and parents (N = 968) completed measures of diabetes distress, diabetes-related strengths, and self-care skills. Half of the sample was used for exploratory factor analyses (EFA) with direct oblimin rotation and the other half for confirmatory factor analyses (CFAs). RESULTS: For the PAID-C, EFA and CFAs supported an 11-item two-factor measure, Cronbach's α = .91, accounting for 54.6% of the variance. For the P-PAID-C, analyses resulted in a 16-item measure, Cronbach's α = .92, accounting for 51.9% of the variance. PAID-C and P-PAID-C scores were positively correlated with HbA1c (rchild = .08, p = .04; rparent = .18, p < .001), and negatively correlated with diabetes-related strengths (rchild = -.38, p < .001, rparent = -.29, p < .001) and parent report of child self-care skills (rparent = -.13, p < .001; rchild = -0.07, p = ns). CONCLUSIONS: Initial psychometrics suggest that the PAID-C and P-PAID-C reliably and validly capture diabetes-specific emotional distress for children and their parents. Associations with glycemic control, self-care, and diabetes strengths demonstrate criterion validity. Both measures have potential applications for routine, clinic-based assessments of diabetes distress and may guide clinical decision-making.
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Diabetes Mellitus Tipo 1/psicología , Padres/psicología , Escalas de Valoración Psiquiátrica , Distrés Psicológico , Autocuidado/psicología , Estrés Psicológico/diagnóstico , Niño , Análisis Factorial , Femenino , Humanos , Masculino , Psicometría , Reproducibilidad de los Resultados , Estrés Psicológico/etiología , Estrés Psicológico/psicología , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To determine the relationship between sport specialization and previous injury in elite male youth soccer players. DESIGN: Retrospective survey. SETTING: U.S. Soccer Development Academy. PARTICIPANTS: Male youth soccer players (N = 2123). ASSESSMENT OF RISK FACTORS: Sport specialization, weekly training volume, training ratio, and age. MAIN OUTCOME MEASURES: Previous sports-related injury, injury type (traumatic vs overuse), injury severity, and injury location. RESULTS: Of 2099 participants (average age 13.2 ± 1.8 years), 61.7% were specialized in soccer (played soccer >8 mo/yr and no other sports) and 38.3% were nonspecialized (played soccer >8 mo/yr and also played other organized sports). Specialized athletes were older than nonspecialized athletes (13.7 ± 1.9 vs 12.5 ± 1.4, P < 0.0001). Thirty-three percent (690/2099) of athletes reported at least one previous sports-related injury for a total of 765 traumatic injuries and 25 overuse injuries. Distribution of injury type was similar for specialized and nonspecialized athletes. Among athletes with overuse injuries, nonspecialized athletes were more likely to report upper-extremity and trunk overuse injuries than specialized athletes. After accounting for age and weekly training volume, specialized athletes had decreased odds of reporting any previous injury compared with nonspecialized athletes [odds ratio (OR), 0.78; 95% confidence interval (CI), 0.64-0.95], and similar odds of reporting a previous lower-extremity (LE) overuse injury as nonspecialized athletes (OR, 0.70; 95% CI, 0.56-1.1). However, specialized athletes missed more practices due to injury than nonspecialized players [median = 3, interquartile range (IQR) 2-4 vs median = 2, IQR 2-4, P = 0.0003]. CONCLUSIONS: In this national sample of elite, male youth soccer players, after accounting for age and weekly training volume, specialized athletes had decreased odds of reporting any previous injury and similar odds of reporting a previous LE overuse injury as nonspecialized athletes. These data suggest the need for further research to determine whether injury risk related to sports specialization depends on sex, chosen sport, and skill/competitive level.
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Trastornos de Traumas Acumulados/diagnóstico , Fútbol/lesiones , Especialización , Adolescente , Factores de Edad , Niño , Trastornos de Traumas Acumulados/etiología , Humanos , Extremidad Inferior/lesiones , Masculino , Acondicionamiento Físico Humano/efectos adversos , Recurrencia , Estudios Retrospectivos , Torso/lesiones , Índices de Gravedad del Trauma , Extremidad Superior/lesionesRESUMEN
BACKGROUND/OBJECTIVES: Infantile hemangiomas are the most common benign tumors of childhood. Although some children with periocular infantile hemangiomas do not require treatment, these lesions may result in amblyopia and visual impairment if not properly treated. We have attempted to characterize clinical features of periocular infantile hemangiomas that predict negative ocular outcomes and thus require prompt referral to an ophthalmologist and initiation of therapy. METHODS: This study included children with periocular infantile hemangiomas consecutively seen at Ann & Robert H. Lurie Children's Hospital of Chicago from January 1994 through December 2014. Only patients evaluated by both a dermatologist and an ophthalmologist were included. Medical records of patients who met inclusion criteria were reviewed. Ocular findings were reviewed for the presence of ptosis, refractive errors, strabismus, proptosis, and amblyopia. RESULTS: Ninety-six patients (74% female, median age of onset 0.48 months) were included. Periocular infantile hemangiomas larger than 1 cm in diameter, with a deep component, and with involvement of the upper eyelid were significantly associated with astigmatism (P = .002, P = .02, and P = .003, respectively) and amblyopia (P = .002, P = .02, and P = .04, respectively). Using logistic regression, diameter greater than 1 cm (odds ratio = 14.13, P = .01) and amblyopia (odds ratio = 21.00, P = .04) were the strongest predictors of astigmatism. Lower lid and medial and lateral canthal involvement were not predictive of ocular complications. CONCLUSION: Predictive factors for ocular complications in patients with periocular infantile hemangiomas are diameter greater than 1 cm, a deep component, and upper eyelid involvement, with size being the most consistent predictor. These patients should be promptly referred to an ophthalmologist, and treatment should be strongly considered.
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Neoplasias del Ojo/complicaciones , Hemangioma/complicaciones , Neoplasias del Ojo/patología , Femenino , Hemangioma/patología , Humanos , Lactante , Recién Nacido , Masculino , Estudios Retrospectivos , Factores de RiesgoRESUMEN
PURPOSE: Finding a breast mass in a child provokes apprehension in parents, especially in those with a family history of breast cancer. Clinicians must decide between serial imaging or biopsy of the mass. Herein, we identify management differences in those with and without a positive family history, as well as identify cost differences. METHODS: An institutional retrospective review was performed of patients (2-18 years of age) with a diagnosis of breast mass. Patient demographics, presentation, medical and surgical history, physical exam, imaging, and pathologic diagnosis were collected. Cost data were acquired from the pediatric health information system (PHIS). Costs were compared between patients managed by biopsy versus serial ultrasounds. Bivariate analyses including Pearson's Chi-square, student's t tests, and logistic regression were performed. RESULTS: The probability of biopsy increases with age (p = 0.0001) and female gender (p = 0.006). Biopsy rate is higher for larger masses (p < 0.0001), growing size (p < 0.0001), and in patients with a positive family history of breast cancer (p < 0.0001). The average cost of care for management with initial excisional biopsy was $4491 versus those with serial ultrasounds ($986) (p < 0.0001). CONCLUSIONS: In patients with small lesions, even with a family history of breast cancer, non-operative monitoring is a safe and cost-effective alternative to invasive biopsy.