Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 57
Filtrar
1.
Simul Healthc ; 2023 Apr 25.
Artículo en Inglés | MEDLINE | ID: mdl-37094370

RESUMEN

INTRODUCTION: Although most cases of pediatric convulsive status epilepticus start in the prehospital setting, many patients do not receive treatment. The use of prehospital seizure rescue medications by caregivers is crucial, but studies suggest a lack of proper training on medication use. METHODS: We created a novel proof of principle mannequin and simulation for training proper administration of rectal diazepam, with a scoring paradigm to standardize and assess the educational process. RESULTS: Twenty-three health care providers (nurses and nurse practitioners, residents/fellows, and attending physicians) and 5 patient guardians/parents were included in the study. The rectal diazepam simulator displayed a high degree of physical and emotional realism (mean ≥ 4/5 on Likert scale survey) that effectively decreased time to treatment (-12.3 seconds; SD, 16.3) and improved the accuracy of medication delivery in a simulation setting (-4.2 points; SD, 3.1). The scoring technique had appropriate interrater reliability (≥86% on all but 2 prompts) and was a feasible instrument to assess the effectiveness of the educational intervention. CONCLUSIONS: A unique procedure-focused child simulator and rescue medication score offer an innovative and effective means to train caregivers on the use of lifesaving seizure rescue medications.

2.
Blood Adv ; 6(6): 1844-1853, 2022 03 22.
Artículo en Inglés | MEDLINE | ID: mdl-34470054

RESUMEN

Pyruvate kinase deficiency (PKD) is the most common cause of congenital nonspherocytic hemolytic anemia. Although recognition of the disease spectrum has recently expanded, data describing its impact on health-related quality of life (HRQoL) are limited. In this prospective international cohort of 254 patients (131 adults and 123 children) with PKD, we used validated measures to assess the impact of disease on HRQoL (EuroQol 5-Dimension Questionnaire, Pediatric Quality of Life Inventory Generic Core Scale version 4.0, and Functional Assessment of Cancer Therapy-Anemia) and fatigue (Patient Reported Outcomes Measurement Information System Fatigue and Pediatric Functional Assessment of Chronic Illness Therapy-Fatigue). Significant variability in HRQoL and fatigue was reported for adults and children, although individual scores were stable over a 2-year interval. Although adults who were regularly transfused reported worse HRQoL and fatigue compared with those who were not (EuroQol-visual analog scale, 58 vs 80; P = .01), this difference was not seen in children. Regularly transfused adults reported lower physical, emotional, and functional well-being and more anemia symptoms. HRQoL and fatigue significantly differed in children by genotype, with the worst scores in those with 2 severe PKLR mutations; this difference was not seen in adults. However, iron chelation was associated with significantly worse HRQoL scores in children and adults. Pulmonary hypertension was also associated with significantly worse HRQoL. Additionally, 59% of adults and 35% of children reported that their jaundice upset them, identifying this as an important symptom for consideration. Although current treatments for PKD are limited to supportive care, new therapies are in clinical trials. Understanding the impact of PKD on HRQoL is important to assess the utility of these treatments. This trial was registered at www.clinicaltrials.gov as #NCT02053480.


Asunto(s)
Anemia Hemolítica Congénita no Esferocítica , Adulto , Anemia Hemolítica Congénita no Esferocítica/complicaciones , Anemia Hemolítica Congénita no Esferocítica/diagnóstico , Anemia Hemolítica Congénita no Esferocítica/terapia , Niño , Fatiga/etiología , Humanos , Estudios Prospectivos , Piruvato Quinasa/deficiencia , Errores Innatos del Metabolismo del Piruvato , Calidad de Vida
3.
J Learn Disabil ; 55(5): 351-358, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-34865563

RESUMEN

Learning disorders can have adverse impacts on children and families extending beyond the academic skills deficits. The goal of the present study was to assess the impact of the school's response, following an independent evaluation, for child and family school-related quality of life (QOL). We hypothesized that a positive school response would be associated with improved QOL. Parents completed the LDQOL/15, a brief measure of school-related QOL, at the time that their child received an independent evaluation and again a year later (N = 155). At follow-up, parents reported the tenor of the school's response to the evaluation and whether special education services had changed. QOL problems were very high in this referred population, with 66% of respondents rating a level of problems in the clinical range at baseline. Predicted interactions between time of assessment (baseline/follow-up) and the school's response to the evaluation were confirmed for all outcome variables; a positive school response was associated with improved QOL. Nevertheless, the overall prevalence of school-related QOL problems remained high a year after the evaluation. These findings indicate that special education interventions can mitigate learning disabilities' impacts, but even with these services, many children with learning disorders and their families continue to be significantly affected.


Asunto(s)
Discapacidades para el Aprendizaje , Calidad de Vida , Niño , Educación Especial , Estudios de Seguimiento , Humanos , Discapacidades para el Aprendizaje/epidemiología , Instituciones Académicas
4.
J Asthma ; 59(2): 315-324, 2022 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-33198536

RESUMEN

INTRODUCTION: The Hospital Asthma Severity Score (HASS) was developed to communicate inpatient asthma severity between providers. The purpose of this prospective study was to validate the HASS against the Pediatric Respiratory Assessment Measure (PRAM) and spirometry for assessment of inpatient asthma exacerbation severity in patients 2-18 years old, at a single point-in-time. METHODS: This study was registered with clinicaltrials.gov (NCT02782065). Children admitted to a tertiary care, free-standing children's hospital were assessed for asthma severity using the HASS, PRAM, and pulmonary function by spirometry. Inter-rater agreement of HASS and PRAM scores was assessed between two blinded clinician raters. Spirometry results were obtained by a certified pulmonary laboratory technician and correlated with HASS and PRAM scores. RESULTS: The sample included 58 subjects. Allowing for a one-point difference in continuous HASS and PRAM scores, inter-rater agreement was 79% for the HASS and 60% for the PRAM. When the scores were categorized as mild, moderate, and severe, inter-rater agreement was 62% for the HASS and 93% for the PRAM (p < .0001). Additionally, intra-rater agreement between HASS and PRAM severity categories was 71% for Rater 1 and 64% for Rater 2. A weak correlation was noted between both the HASS and FEV1 (r = -0.31; p = 0.11), and PRAM and FEV1 (r = -0.30; p = 0.11) for the 29 subjects with acceptable spirometry results. CONCLUSIONS: The HASS and PRAM have acceptable inter-rater and intra-rater agreement. These results support validation of the HASS for managing hospitalized patients during asthma exacerbations.


Asunto(s)
Asma , Adolescente , Asma/diagnóstico , Niño , Preescolar , Hospitales , Humanos , Estudios Prospectivos , Índice de Severidad de la Enfermedad , Espirometría/métodos
5.
Holist Nurs Pract ; 36(2): 105-111, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-34293753

RESUMEN

Nurses experience stress in the workplace. We evaluated the feasibility and effect of Reiki to relieve stress of staff nurses during a work shift. All Reiki treatments were completed without interruption and lasted 30 minutes. Stress scores, respiratory rate, and heart rate were significantly decreased immediately following the Reiki treatment.


Asunto(s)
Tacto Terapéutico , Estudios de Factibilidad , Frecuencia Cardíaca , Hospitales , Humanos , Estrés Psicológico/terapia
6.
J Res Nurs ; 26(1-2): 149-165, 2021 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35251236

RESUMEN

BACKGROUND: Evidence-based practice (EBP) is essential for clinical decision-making, improving care, reducing costs and achieving optimal patient outcomes. The Evidence-based Practice Mentorship Program (EBPMP) is a flexible, self-directed programme whereby participants carry out EBP projects guided by expert mentors. AIMS: To evaluate EBPMP effectiveness and participant experience. METHODS: To evaluate effectiveness, as measured by changes in EBP value, knowledge and implementation, participants completed pre- and post-EBPMP Quick-EBP-Value, Implementation and Knowledge (VIK) surveys. To understand participants' experiences individual and group interviews were conducted at the end of the programme and analysed using qualitative content analysis. RESULTS: Most participants were over 50 years old, Caucasian, inpatient staff nurses, baccalaureate prepared, with over 11 years' experience. Statistically significant improvements were observed in the post Quick-EBP-VIK knowledge and implementation domains. Individual and group participant interviews revealed four categories of importance to the experience: 1. perceived benefits of EBP, 2. time as a barrier to EBP, 3. desire for more cohort interaction and 4. positive mentee-mentor experience. CONCLUSIONS: EBPMP can improve participants' knowledge and implementation of EBP in an environment that values EBP; however, opportunities exist to implement programme modifications that address barriers identified by participants including project time and increased participant interactions.

7.
Diabetes Educ ; 46(3): 252-260, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-32597383

RESUMEN

PURPOSE: The purpose of the study was to describe experiences reported by diabetes care and education specialists caring for young adults with type 1 diabetes and to assess perceived deficiencies in clinical resources and barriers to care delivery. METHODS: A 60-item electronic survey was fielded through email to members of the Association of Diabetes Care and Education Specialists (ADCES). Respondents completed a survey consisting of: (1) clinical practice characteristics and respondents' demographics; (2) health care transition components (eg, referrals) and their perceived importance; (3) framework of current clinical diabetes care delivery and perceived need for additional support; and (4) perceived barriers regarding clinical care delivery. Statistical analyses included descriptive statistics, chi-square tests, and logistic regression. RESULTS: Respondents (N = 531, 96% female, median years in practice = 13; interquartile range = 7-20) represented 49 states plus the District of Columbia. Although 88% of respondents reported reviewing pediatric records as important/very important, only 22% often/always reviewed them. Although 58% of respondents noted easy access to mental health care providers for young adults, 50% stated a need for additional resources. Furthermore, diabetes care and education specialists without easy access to mental health professionals were significantly more likely to report barriers to diabetes management for young adults with depression, substance abuse, eating disorders, and developmental disabilities. CONCLUSION: Study findings highlight modifiable factors that may improve diabetes care coordination for transitioning young adults. Uniform approaches and increased access to trained mental health professionals may help support diabetes care and education specialists in their care of young adults with type 1 diabetes.


Asunto(s)
Diabetes Mellitus Tipo 1/terapia , Educadores en Salud/psicología , Transición a la Atención de Adultos , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Adulto Joven
8.
Br J Haematol ; 191(1): 98-106, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32501532

RESUMEN

Immune thrombocytopenia (ITP), an acquired autoimmune disorder of low platelets and risk of bleeding, has a substantial impact on health-related quality of life (HRQoL). Patients with ITP often report significant fatigue, although the pathophysiology of this is poorly understood. In this observational cohort of 120 children receiving second-line therapies for ITP, we assessed reports of fatigue using the Hockenberry Fatigue Scale. Children and adolescents with ITP reported a similarly high level of fatigue with 54% (29/54) of children and 62% (26/42) of adolescents reporting moderate-to-severe fatigue. There was no correlation between fatigue and age or gender. Adolescents with newly diagnosed and persistent ITP had higher mean fatigue scores than those with chronic ITP (P = 0·03). Fatigue significantly improved in children and adolescents by 1 month after starting second-line treatments, and this improvement continued to be present at 12 months after starting treatment. Fatigue scores at all time-points correlated with general HRQoL using the Kids ITP Tool, but did not correlate with bleeding symptoms, platelet count, or platelet response to treatment. Fatigue is common in children and adolescents with ITP and may benefit from ITP-directed treatment even in the absence of bleeding symptoms.


Asunto(s)
Fatiga , Púrpura Trombocitopénica Idiopática , Adolescente , Niño , Preescolar , Fatiga/epidemiología , Fatiga/etiología , Fatiga/fisiopatología , Fatiga/terapia , Femenino , Humanos , Lactante , Estudios Longitudinales , Masculino , Púrpura Trombocitopénica Idiopática/complicaciones , Púrpura Trombocitopénica Idiopática/epidemiología , Púrpura Trombocitopénica Idiopática/fisiopatología , Púrpura Trombocitopénica Idiopática/terapia
9.
JAMA Netw Open ; 3(3): e201804, 2020 03 02.
Artículo en Inglés | MEDLINE | ID: mdl-32232448

RESUMEN

Importance: Blood type (BT) O has been identified as a risk factor for bleeding complications, while non-O BTs may increase risk for thromboembolic events. Limited data are available in children undergoing tonsillectomy with or without adenoidectomy. Objective: To determine whether BT O is associated with hemorrhage after tonsillectomy with or without adenoidectomy. Design, Setting, and Participants: Retrospective cohort study of patients younger than 22 years who underwent tonsillectomy with or without adenoidectomy at a single institution between January 1, 2008, and August 7, 2017. Statistical analysis was performed from November 2017 to January 2019. Main Outcomes and Measures: Prevalence of hemorrhage following surgery was defined as any bleeding requiring cauterization up to 1 month after the procedure. Data on sex, age, von Willebrand disease (VWD) status, BT, white blood cell counts, and platelet counts closest to date of surgery were collected from an electronic medical record system, and the association of these factors with hemorrhage following surgery was investigated. Results: A total of 14 951 pediatric patients (median [range] age, 5.6 [0.8-21.9] years; 6956 [46.5%] female) underwent tonsillectomy with or without adenoidectomy. Prevalence of hemorrhage following the procedure was 3.9% (578 patients) for the full cohort and 2.8% (362 of 13 065) for patients with no BT identified or preprocedure VWD panel results at baseline. Children who had a BT identified and/or a VWD panel before surgery had higher bleeding rates (BT only, 14.9% [172 of 1156]; preprocedure VWD panel only, 4.6% [28 of 607]; and BT and preprocedure VWD panel, 13.0% [16 of 123]), all of which were significantly different from the baseline bleeding rate (P < .001). While the bleeding rates in children with BT O were not statistically different from those with non-O BT (14.8% and 14.6%, respectively; P > .99), mean von Willebrand factor values were statistically different (mean [SD] von Willebrand factor antigen level in O group, 86.9 [42.4] IU/dL in the O group vs 118.0 [53.8] IU/dL in the non-O group; P = .002; and mean [SD] von Willebrand factor ristocetin-cofactor in the O group, 72.2 [44.3] IU/dL vs 112.6 [68.0] IU/dL in the non-O group; P = .001). In addition, children older than 12 years had increased bleeding rates in the full cohort (8.3% vs 3.2%), in the testing-naive cohort (6.5% vs 2.3%), and in those with a preprocedure VWD panel only (13.5% vs 3.1%) compared with children aged 12 years or younger. Conclusions and Relevance: Type O blood was not a risk factor associated with hemorrhage after tonsillectomy with or without adenoidectomy despite lower baseline von Willebrand factor antigen and von Willebrand factor ristocetin-cofactor values in children with BT O vs those with non-O BT in our study cohort. No association was found between VWD status and bleeding, and there was no difference in VWD panel values in those who experienced hemorrhage vs those who did not within BT groups. Further studies elucidating the utility of von Willebrand factor values for children undergoing tonsillectomy with or without adenoidectomy are needed.


Asunto(s)
Sistema del Grupo Sanguíneo ABO , Adenoidectomía , Hemorragia Posoperatoria , Tonsilectomía , Adenoidectomía/efectos adversos , Adenoidectomía/estadística & datos numéricos , Adolescente , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Hemorragia Posoperatoria/sangre , Hemorragia Posoperatoria/epidemiología , Estudios Retrospectivos , Tonsilectomía/efectos adversos , Tonsilectomía/estadística & datos numéricos , Adulto Joven
10.
JPEN J Parenter Enteral Nutr ; 44(5): 895-902, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-31529507

RESUMEN

BACKGROUND: Infants with chylothorax after congenital heart disease surgery are commonly treated using modified-fat breast milk. The effect of fat removal on breast milk macronutrients remains unclear. We compared macronutrient content of breast milk with breast milk skimmed using 3 methods, including a novel device, a cream separator. METHODS: Thawed frozen breast milk samples from 30 women were defatted using refrigerated centrifuge, cream separator, and manual separation after refrigeration. We used standard assays to measure energy, protein, and fat content of breast milk samples. RESULTS: All fat removal methods yielded skimmed breast milk with substantially lower fat and energy content. Mean energy content in breast milk skimmed by centrifuge (36.7 [SD 3.6] kcal/100 mL) was similar to that from cream separator (38.8 [3.5] kcal/100 mL). Both centrifuge and cream separator methods removed almost all fat and substantially more fat than the manual fat removal method. For unprocessed milk, energy and fat content estimated by creamatocrit was similar to reference method measurements; in skimmed milk, the creamatocrit significantly overestimated fat content. Mean protein content of skimmed breast milk was similar to unprocessed breast milk (mean 1.25 [0.31] g/100 mL). CONCLUSION: Breast milk fat removal did not significantly alter protein levels. In skimmed breast milk, the overestimation of fat content using creamatocrit method suggests a need for more accurate bedside methods to assess macronutrient content. The similar macronutrient composition of breast milk skimmed by cream separator and centrifuge suggests the potential for cream separator use as a new, portable defatting method for hospitals and families.


Asunto(s)
Leche Humana , Nutrientes , Animales , Quilotórax , Femenino , Humanos , Lactante
11.
Front Integr Neurosci ; 13: 31, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31427932

RESUMEN

BACKGROUND: Early identification and treatment of individuals with autism spectrum disorder (ASD) improves outcomes, but specific evidence needed to individualize treatment recommendations is lacking. Biomarkers that could be routinely measured within the clinical setting could potentially transform clinical care for patients with ASD. This demonstration project employed collection of biomarker data during regular autism specialty clinical visits and explored the relationship of biomarkers with clinical ASD symptoms. METHODS: Eighty-three children with ASD, aged 5-10 years, completed a multi-site feasibility study integrating the collection of biochemical (blood serotonin, urine melatonin sulfate excretion) and clinical (head circumference, dysmorphology exam, digit ratio, cognitive and behavioral function) biomarkers during routine ASD clinic visits. Parents completed a demographic survey and the Aberrant Behavior Checklist-Community. Cognitive function was determined by record review. Data analysis utilized Wilcoxon two-sample tests and Spearman correlations. RESULTS: Participants were 82% male, 63% White, 19% Hispanic, with a broad range of functioning. Group means indicated hyperserotonemia. In a single regression analysis adjusting for race and median household income, higher income was associated with higher levels of blood serotonin and urine melatonin sulfate excretion levels (p = 0.004 and p = 0.04, respectively). Melatonin correlated negatively with age (p = 0.048) and reported neurologic problems (p = 0.02). Dysmorphic status correlated with higher reported stereotyped behavior (p = 0.02) and inappropriate speech (p = 0.04). CONCLUSION: This demonstration project employed collection of multiple biomarkers, allowed for examination of associations between biochemical and clinical measures, and identified several findings that suggest direction for future studies. This clinical research model has promise for integrative biomarker research in individuals with complex, heterogeneous neurodevelopmental disorders such as ASD.

12.
Am J Hematol ; 94(7): 741-750, 2019 07.
Artículo en Inglés | MEDLINE | ID: mdl-30945320

RESUMEN

Immune thrombocytopenia (ITP) is an autoimmune bleeding disorder with isolated thrombocytopenia and hemorrhagic risk. While many children with ITP can be safely observed, treatments are often needed for various reasons, including to decrease bleeding, or to improve health related quality of life (HRQoL). There are a number of available second-line treatments, including rituximab, thrombopoietin-receptor agonists, oral immunosuppressive agents, and splenectomy, but data comparing treatment outcomes are lacking. ICON1 is a prospective, multi-center, observational study of 120 children starting second-line treatments for ITP designed to compare treatment outcomes including platelet count, bleeding, and HRQoL utilizing the Kids ITP Tool (KIT). While all treatments resulted in increased platelet counts, romiplostim had the most pronounced effect at 6 months (P = .04). Only patients on romiplostim and rituximab had a significant reduction in both skin-related (84% to 48%, P = .01 and 81% to 43%, P = .004) and non-skin-related bleeding symptoms (58% to 14%, P = .0001 and 54% to 17%, P = .0006) after 1 month of treatment. HRQoL significantly improved on all treatments. However, only patients treated with eltrombopag had a median improvement in KIT scores at 1 month that met the minimal important difference (MID). Bleeding, platelet count, and HRQoL improved in each treatment group, but the extent and timing of the effect varied among treatments. These results are hypothesis generating and help to improve our understanding of the effect of each treatment on specific patient outcomes. Combined with future randomized trials, these findings will help clinicians select the optimal second-line treatment for an individual child with ITP.


Asunto(s)
Púrpura Trombocitopénica Idiopática , Calidad de Vida , Receptores Fc/administración & dosificación , Proteínas Recombinantes de Fusión/administración & dosificación , Rituximab/administración & dosificación , Trombopoyetina/administración & dosificación , Adolescente , Niño , Preescolar , Supervivencia sin Enfermedad , Femenino , Humanos , Lactante , Masculino , Recuento de Plaquetas , Estudios Prospectivos , Púrpura Trombocitopénica Idiopática/sangre , Púrpura Trombocitopénica Idiopática/tratamiento farmacológico , Tasa de Supervivencia , Factores de Tiempo
13.
Pediatr Blood Cancer ; 66(6): e27663, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-30786168

RESUMEN

BACKGROUND: In 2014, a task force of the International Society of Paediatric Oncology (SIOP) Paediatric Oncology in Developing Countries Nursing Workgroup published six baseline standards to provide a framework for pediatric oncology nursing care in low- and lower-middle income countries (L/LMIC). We conducted an international survey in 2016-2017 to examine the association between country income level and nurses' resporting of conformity to the standards at their respective institutions. PROCEDURE: Data from a cross-sectional web-based survey completed by nurses representing 54 countries were analyzed (N = 101). Responses were clustered by relevance to each standard and compared according to the 2017 World Bank-defined country income classification (CIC) of hospitals. RESULTS: CIC and nurse-to-patient ratios in inpatient wards were strongly associated (P < 0.0001). Nurses in L/LMIC prepared chemotherapy more often (P < 0.0001) yet were less likely to have access to personal protective equipment such as nitrile gloves (P = 0.0007) and fluid-resistant gowns (P = 0.011) than nurses in high-resource settings. Nurses in L/LMIC were excluded more often from physician/caregiver meetings to discuss treatment options (P = 0.04) and at the time of diagnosis (P = 0.002). Key educational topics were missing from nursing orientation programs across all CICs. An association between CIC and the availability of written policies (P = 0.009) was found. CONCLUSIONS: CIC and the ability to conform to pediatric oncology baseline nursing standards were significantly associated in numerous elements of the baseline standards, a likely contributor to suboptimal patient outcomes in L/LMIC. To achieve the goal of high-quality cancer care for children worldwide, nursing disparities must be addressed.


Asunto(s)
Disparidades en Atención de Salud/normas , Renta/estadística & datos numéricos , Neoplasias/enfermería , Enfermería Oncológica/normas , Enfermería Pediátrica/normas , Calidad de la Atención de Salud/normas , Nivel de Atención , Estudios Transversales , Países en Desarrollo , Humanos , Agencias Internacionales , Pronóstico , Encuestas y Cuestionarios
14.
Pediatr Emerg Care ; 35(3): 170-175, 2019 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-28248838

RESUMEN

OBJECTIVE: In current practice, treatment as usual (TAU) for suicidal adolescents includes evaluation, with little or no intervention provided in the emergency department (ED), and disposition, usually to an inpatient psychiatry unit. The family-based crisis intervention (FBCI) is an emergency psychiatry intervention designed to sufficiently stabilize suicidal adolescents within a single ED visit so that they may return home safely with their families. The objective of this article is to report efficacy outcomes related to FBCI for suicidal adolescents and their families. METHODS: A total of 142 suicidal adolescents (age, 13-18 years) and their families presenting for psychiatric evaluation to a large pediatric ED were randomized to receive FBCI or TAU. Patients and caregivers completed self-report measures of suicidality, family empowerment, and satisfaction with care provided at pretest, posttest, and 3 follow-up time points over a 1-month period. RESULTS: Patients randomized to FBCI were significantly more likely to be discharged home with outpatient follow-up care compared with their TAU counterparts (P < 0.001). Families randomized to the FBCI condition reported significantly higher levels of family empowerment and client satisfaction with care at posttest compared with their TAU counterparts. Gains were maintained over the follow-up period. No completed suicides were reported during the study period in either condition. CONCLUSIONS: Family-based crisis intervention is a model of care for suicidal adolescents that may be a viable alternative to traditional ED care that involves inpatient psychiatric hospitalization.


Asunto(s)
Conducta del Adolescente/psicología , Intervención en la Crisis (Psiquiatría)/métodos , Familia/psicología , Suicidio/psicología , Adolescente , Servicio de Urgencia en Hospital , Femenino , Estudios de Seguimiento , Hospitalización/estadística & datos numéricos , Humanos , Masculino , Relaciones Padres-Hijo , Alta del Paciente/estadística & datos numéricos , Satisfacción del Paciente/estadística & datos numéricos , Reincidencia/estadística & datos numéricos , Prevención del Suicidio
15.
J Learn Disabil ; 52(2): 146-157, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-29860921

RESUMEN

Learning problems (LP) can have wider implications than the academic deficits per se. The goal of the present series of studies was to develop a reliable and valid quality-of-life measure targeted to children and adolescents with LP. In Study 1, using a 35-item questionnaire, we surveyed 151 parents/guardians of children referred for assessment of learning disorders. Exploratory factor analysis identified a three-factor model: Academic Performance, School Understanding, and Child/Family Psychological. These factors were validated against standardized measures of academic achievement and psychosocial functioning. The questionnaire was then reduced to 15 items-the LD/QOL15 -and administered to a community sample of 325 parents/guardians of children in Grades 1 to 8 (Study 2). The three-factor model was verified with confirmatory factor analysis. Comparison of general education ( n = 232) and LP ( n = 93) groups within the community sample documented substantial group differences ( p < .0001), with the LP group having higher mean scores. These differences were larger for older students (Grades 5-8) than younger students (Grades 1-4; p < .01). The LD/QOL15 is a brief and reliable measure that is valid to assess quality of life and, potentially, outcomes in children and adolescents with LP.


Asunto(s)
Discapacidades para el Aprendizaje/psicología , Psicometría/normas , Calidad de Vida , Adolescente , Niño , Análisis Factorial , Femenino , Humanos , Masculino , Psicometría/instrumentación , Psicometría/métodos , Reproducibilidad de los Resultados
16.
Am J Hematol ; 93(7): 882-888, 2018 07.
Artículo en Inglés | MEDLINE | ID: mdl-29659042

RESUMEN

Immune thrombocytopenia (ITP) is an acquired autoimmune bleeding disorder which presents with isolated thrombocytopenia and risk of hemorrhage. While most children with ITP promptly recover with or without drug therapy, ITP is persistent or chronic in others. When needed, how to select second-line therapies is not clear. ICON1, conducted within the Pediatric ITP Consortium of North America (ICON), is a prospective, observational, longitudinal cohort study of 120 children from 21 centers starting second-line treatments for ITP which examined treatment decisions. Treating physicians reported reasons for selecting therapies, ranking the top three. In a propensity weighted model, the most important factors were patient/parental preference (53%) and treatment-related factors: side effect profile (58%), long-term toxicity (54%), ease of administration (46%), possibility of remission (45%), and perceived efficacy (30%). Physician, health system, and clinical factors rarely influenced decision-making. Patient/parent preferences were selected as reasons more often in chronic ITP (85.7%) than in newly diagnosed (0%) or persistent ITP (14.3%, P = .003). Splenectomy and rituximab were chosen for the possibility of inducing long-term remission (P < .001). Oral agents, such as eltrombopag and immunosuppressants, were chosen for ease of administration and expected adherence (P < .001). Physicians chose rituximab in patients with lower expected adherence (P = .017). Treatment choice showed some physician and treatment center bias. This study illustrates the complexity and many factors involved in decision-making in selecting second-line ITP treatments, given the absence of comparative trials. It highlights shared decision-making and the need for well-conducted, comparative effectiveness studies to allow for informed discussion between patients and clinicians.


Asunto(s)
Toma de Decisiones Clínicas , Púrpura Trombocitopénica Idiopática/tratamiento farmacológico , Niño , Toma de Decisiones , Femenino , Humanos , Inmunosupresores/uso terapéutico , Masculino , Médicos/psicología , Rituximab/uso terapéutico , Esplenectomía
17.
Orthop Nurs ; 37(2): 136-143, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29570548

RESUMEN

BACKGROUND: Patients with Gross Motor Function Classification System (GMFCS) IV-V cerebral palsy (CP) have significant spasticity and frequently develop scoliosis. Intrathecal baclofen (ITB) pumps are effective in managing spasticity. The effect of ITB therapy on the postoperative course following spinal fusion in patients with GMFCS IV-V CP has not been described. This study sought to compare postoperative recovery, including complications, in patients using ITB therapy with those with no ITB therapy. PURPOSE: Evaluate the effect of ITB on the postoperative recovery for patients with GMFCS IV-V CP who undergo spinal fusion for scoliosis. METHODS: Health records for patients with GMFCS IV-V CP who underwent a spinal fusion for scoliosis at a major quaternary-care children's hospital from January 2009 to October 2015 were reviewed and relevant data were abstracted. Descriptive statistics and regression models were used to compare patients. RESULTS: Sixty-nine patients were included-19 ITB therapy and 50 no ITB therapy. Demographic and operative characteristics were similar across groups. The mean length of stay for patients in the ITB therapy group was 11.2 days and 14.3 days for the no ITB therapy group, with no difference between groups (p = .12). Pain scores in both groups decreased at the same rate, with scores in the ITB therapy group averaging one-half point lower (p = .32). The average amount of morphine equivalents (p = .71) and benzodiazepine equivalents (p = .53) used were similar between groups. Complication rates were significantly different between groups. Four (21%) of the ITB therapy patients had 1 or more complications whereas 28 (56%, p = .01) in the no ITB therapy group had 1 or more complications. The average number of complications per patient in the ITB therapy group was 0.3 (SD: 0.075, range: 0-3) and the no ITB therapy group was 1.1 (SD: 1.1, range: 0-6, p = .01). CONCLUSIONS: There was no significant difference in length of stay, pain scores, or pain/spasticity medication use between groups after spinal fusion, but there was a significantly lower incidence of complications in the ITB therapy group.


Asunto(s)
Baclofeno/uso terapéutico , Catéteres de Permanencia , Parálisis Cerebral/fisiopatología , Espasticidad Muscular/terapia , Fusión Vertebral/efectos adversos , Femenino , Humanos , Masculino , Relajantes Musculares Centrales/administración & dosificación , Dolor/etiología , Complicaciones Posoperatorias , Estudios Retrospectivos , Escoliosis/cirugía
18.
Cancer ; 123(24): 4903-4913, 2017 Dec 15.
Artículo en Inglés | MEDLINE | ID: mdl-28881451

RESUMEN

BACKGROUND: Pediatric oncology patients are at high risk of clinical deterioration, particularly in hospitals with resource limitations. The performance of pediatric early warning systems (PEWS) to identify deterioration has not been assessed in these settings. This study evaluates the validity of PEWS to predict the need for unplanned transfer to the pediatric intensive care unit (PICU) among pediatric oncology patients in a resource-limited hospital. METHODS: A retrospective case-control study comparing the highest documented and corrected PEWS score before unplanned PICU transfer in pediatric oncology patients (129 cases) with matched controls (those not requiring PICU care) was performed. RESULTS: Documented and corrected PEWS scores were found to be highly correlated with the need for PICU transfer (area under the receiver operating characteristic, 0.940 and 0.930, respectively). PEWS scores increased 24 hours prior to unplanned transfer (P = .0006). In cases, organ dysfunction at the time of PICU admission correlated with maximum PEWS score (correlation coefficient, 0.26; P = .003), patients with PEWS results ≥4 had a higher Pediatric Index of Mortality 2 (PIM2) (P = .028), and PEWS results were higher in patients with septic shock (P = .01). The PICU mortality rate was 17.1%; nonsurvivors had higher mean PEWS scores before PICU transfer (P = .0009). A single-point increase in the PEWS score increased the odds of mechanical ventilation or vasopressors within the first 24 hours and during PICU admission (odds ratio 1.3-1.4). CONCLUSIONS: PEWS accurately predicted the need for unplanned PICU transfer in pediatric oncology patients in this resource-limited setting, with abnormal results beginning 24 hours before PICU admission and higher scores predicting the severity of illness at the time of PICU admission, need for PICU interventions, and mortality. These results demonstrate that PEWS aid in the identification of clinical deterioration in this high-risk population, regardless of a hospital's resource-level. Cancer 2017;123:4903-13. © 2017 American Cancer Society.


Asunto(s)
Recursos en Salud/economía , Mortalidad Hospitalaria/tendencias , Unidades de Cuidado Intensivo Pediátrico/economía , Neoplasias/economía , Neoplasias/terapia , Estudios de Casos y Controles , Niño , Preescolar , Países en Desarrollo , Femenino , Guatemala , Hospitalización/economía , Hospitalización/estadística & datos numéricos , Humanos , Lactante , Unidades de Cuidado Intensivo Pediátrico/estadística & datos numéricos , Masculino , Neoplasias/patología , Pediatría/economía , Curva ROC , Estudios Retrospectivos , Factores Socioeconómicos
19.
BMC Pregnancy Childbirth ; 17(1): 286, 2017 Sep 05.
Artículo en Inglés | MEDLINE | ID: mdl-28870169

RESUMEN

BACKGROUND: Our aims were to (1) describe the frequency of physical activity and prenatal healthcare provider advice about physical activity during pregnancy and (2) examine determinants and correlates of 3rd trimester physical activity and receipt of physical activity advice. METHODS: We analyzed data from the 2008 Pregnancy Risk Assessment Monitoring System. We studied 2669 women from North Carolina and Colorado with data on physical activity frequency in the 3 months prior to pregnancy and during the 3rd trimester and 1584 women from Oklahoma with data on provider advice regarding physical activity during pregnancy. Respondents reported physical activity, defined as 30 min or more of exercise/physical activity (excluding vocationally related activity), in in these categories: <1 day/week, 1-4 days/week, and ≥5 days/week. We defined adherence to American College of Obstetrics & Gynecology (ACOG) criteria as physical activity ≥5 days/week in the 3rd trimester. We performed logistic regression analyses weighted for sampling and adjusted for socio-demographic factors. RESULTS: Forty-two percent of women in North Carolina and Colorado reported 3rd trimester physical activity <1 day/week, 42% 1-4 days/week, 9% ≥5 days/week; 7% reported being told not to exercise. Seventy-two percent of women in Oklahoma reported receiving physical activity advice from a prenatal care provider. Low activity frequency (<1 day/week) prior to pregnancy was strongly associated with low likelihood of ACOG guideline adherence in the 3rd trimester (aOR 0.10, 95% CU 0.04, 0.30 vs. 1-4 days/week). Underweight women were more likely to adhere to ACOG guidelines than normal weight women (aOR 2.27, 95% CI 1.36, 3.79). Overweight women were more likely to receive physical activity advice (aOR 2.9, 95% CI 1.3, 6.3 vs. normal weight), but obese women were not (aOR 0.65, 95% CI 0.4, 1.2). CONCLUSIONS: Few women meet ACOG guideline criteria for physical activity during pregnancy. Improving physical activity and weight status prior to pregnancy may improve activity levels during pregnancy. Nearly one third did not receive advice about physical activity during prenatal care. Obese women were no more likely to receive advice than their normal weight counterparts, indicating the need for targeted physical activity counseling in this population.


Asunto(s)
Consejo/estadística & datos numéricos , Ejercicio Físico/psicología , Cooperación del Paciente/estadística & datos numéricos , Trimestres del Embarazo/psicología , Atención Prenatal/estadística & datos numéricos , Adulto , Colorado , Consejo/métodos , Consejo/normas , Terapia por Ejercicio/psicología , Terapia por Ejercicio/estadística & datos numéricos , Femenino , Adhesión a Directriz/estadística & datos numéricos , Humanos , Modelos Logísticos , North Carolina , Obesidad/psicología , Obesidad/terapia , Oklahoma , Embarazo , Complicaciones del Embarazo/psicología , Complicaciones del Embarazo/terapia , Atención Prenatal/métodos , Atención Prenatal/normas , Medición de Riesgo , Encuestas y Cuestionarios , Delgadez/psicología , Delgadez/terapia , Aumento de Peso , Adulto Joven
20.
J Dev Behav Pediatr ; 38(7): 483-492, 2017 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-28723825

RESUMEN

OBJECTIVE: Recruitment and completion of research activities during regular clinical care has the potential to increase research participation in complex neurodevelopmental disorders. We evaluated the feasibility, and effect on clinical care, of conducting biomarker research within a subspecialty clinical visit for autism spectrum disorder (ASD). METHODS: Children, aged 5 to 10 years, were recruited by providers in ASD clinics at 5 institutions. Biomarkers collected were growth measurements, head circumference, neurologic and dysmorphology examinations, digit ratio (2D:4D) measurement, and platelet serotonin and urinary melatonin sulfate excretion levels. Parents completed the Aberrant Behavior Checklist-Community and a medical/demographic questionnaire. Cognitive level was abstracted from the medical record. Parents and clinicians completed surveys on the effect of the study on the clinical visit. RESULTS: Eighty-three children and their caregivers participated. Factors limiting participation included difficulty reaching families by phone and parent concern about the study blood draw requirement. All children completed at least 4 of 7 planned research activities. Demographic factors, educational placement, and child behavior were not associated with completion of study activities. Lower nonverbal cognitive function was weakly associated with fewer activities completed. Forty-four percent of clinicians reported an effect of the research study on the clinical visit. However, neither parent-reported nor clinician-reported effect was associated with the degree of study activity completion. CONCLUSION: Recruiting study participants in the context of scheduled ASD clinical visits required significant effort. However, once recruited, participants completed most study activities, regardless of behavioral symptom severity. Research activities did not adversely affect the clinical visit.


Asunto(s)
Trastorno del Espectro Autista/diagnóstico , Biomarcadores , Investigación Biomédica/organización & administración , Servicio Ambulatorio en Hospital , Centros Médicos Académicos , Niño , Preescolar , Estudios de Factibilidad , Femenino , Humanos , Masculino , Visita a Consultorio Médico
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA
...