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1.
Simul Healthc ; 2023 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-37094370

RESUMO

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.
Am J Crit Care ; 31(3): 220-228, 2022 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-35466350

RESUMO

BACKGROUND: The inadequate oxygen delivery (IDo2) index is used to estimate the probability that a patient is experiencing inadequate systemic delivery of oxygen. Its utility in the care of critically ill children with sepsis is unknown. OBJECTIVE: To evaluate the relationship between IDo2 dose and major adverse events, illness severity metrics, and outcomes among critically ill children with sepsis. METHODS: Clinical and IDo2 data were retrospectively collected from the records of 102 critically ill children with sepsis, weighing >2 kg, without preexisting cardiac dysfunction. Descriptive, nonparametric, odds ratio, and correlational statistics were used for data analysis. RESULTS: Inadequate oxygen delivery doses were significantly higher in patients who experienced major adverse events (n = 13) than in those who did not (n = 89) during the time intervals of 0 to 12 hours (P < .001), 12 to 24 hours (P = .01), 0 to 24 hours (P < .001), 0 to 36 hours (P < .001), and 0 to 48 hours (P < .001). Patients with an IDo2 dose at 0 to 12 hours at or above the 80th percentile had the highest odds of a major adverse event (odds ratio, 23.6; 95% CI, 5.6-99.4). Significant correlations were observed between IDo2 dose at 0 to 12 hours and day 2 maximum vasoactive inotropic score (ρ = 0.27, P = .006), day 1 Pediatric Logistic Organ Dysfunction (PELOD-2) score (ρ = 0.41, P < .001), day 2 PELOD-2 score (ρ = 0.44, P < .001), intensive care unit length of stay (ρ = 0.35, P < .001), days receiving invasive ventilation (ρ = 0.42, P < .001), and age (ρ = -0.47, P < .001). CONCLUSIONS: Routine IDo2 monitoring may identify critically ill children with sepsis who are at the highest risk of adverse events and poor outcomes.


Assuntos
Estado Terminal , Sepse , Criança , Humanos , Escores de Disfunção Orgânica , Oxigênio , Estudos Retrospectivos
3.
Blood Adv ; 6(6): 1844-1853, 2022 03 22.
Artigo em Inglês | MEDLINE | ID: mdl-34470054

RESUMO

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.


Assuntos
Anemia Hemolítica Congênita não Esferocítica , Adulto , Anemia Hemolítica Congênita não Esferocítica/complicações , Anemia Hemolítica Congênita não Esferocítica/diagnóstico , Anemia Hemolítica Congênita não Esferocítica/terapia , Criança , Fadiga/etiologia , Humanos , Estudos Prospectivos , Piruvato Quinase/deficiência , Erros Inatos do Metabolismo dos Piruvatos , Qualidade de Vida
4.
J Learn Disabil ; 55(5): 351-358, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34865563

RESUMO

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.


Assuntos
Deficiências da Aprendizagem , Qualidade de Vida , Criança , Educação Inclusiva , Seguimentos , Humanos , Deficiências da Aprendizagem/epidemiologia , Instituições Acadêmicas
5.
J Asthma ; 59(2): 315-324, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33198536

RESUMO

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.


Assuntos
Asma , Adolescente , Asma/diagnóstico , Criança , Pré-Escolar , Hospitais , Humanos , Estudos Prospectivos , Índice de Gravidade de Doença , Espirometria/métodos
6.
Holist Nurs Pract ; 36(2): 105-111, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34293753

RESUMO

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.


Assuntos
Toque Terapêutico , Estudos de Viabilidade , Frequência Cardíaca , Hospitais , Humanos , Estresse Psicológico/terapia
7.
J Pediatr Nurs ; 61: 404-409, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34655844

RESUMO

BACKGROUND: Deciding on a disease modifying therapy (DMT) for the treatment of pediatric onset multiple sclerosis (POMS) often presents a challenge to families. Parents are often overwhelmed by DMT choices, but they desire to be an integral part of the decision making process for their child. There is no standard approach for how best to involve families in this process. The aim of this study was to describe the experience of decision making related to the use of disease modifying therapy in parents of children and adolescents with POMS. METHODS: The research aim was addressed using a descriptive survey design. Participants were recruited from the Pediatric MS and Related Disorders Program at Boston Children's Hospital as well as from the Pediatric Multiple Sclerosis Alliance online Facebook group. RESULTS: Overall, fewer than half of parents felt very satisfied with the DMT they chose for their child with POMS (44%). Parental satisfaction with the decision making process increased with a high level of control of the process (p < 0.0001), satisfaction with communication (p < 0.0001), and feeling supported by the healthcare provider (p < 0.0001). PRACTICE IMPLICATIONS: Healthcare providers should recognize the importance of the role of the family in the decision making process and how this directly impacts health outcomes. An open discussion at the time of DMT education should involve identification of family values and preferences. The use of online decision support tools have a valuable role in determining family preferences. CONCLUSION: There is an opportunity of healthcare providers to foster shared decision making practices to improve satisfaction among parents of children and adolescents with POMS. Healthcare providers should work closely with families to identify and incorporate their personal preferences for their role in the decision making process. Future research should include the testing of decision support tools for decision making in POMS.


Assuntos
Tomada de Decisão Compartilhada , Esclerose Múltipla , Adolescente , Criança , Tomada de Decisões , Humanos , Esclerose Múltipla/tratamento farmacológico , Pais , Relações Profissional-Família
8.
Headache ; 61(5): 777-789, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-34105158

RESUMO

BACKGROUND: Headaches are a common symptom in children. Children with refractory headaches may be admitted for inpatient treatment with intravenous dihydroergotamine mesylate (DHE). However, very few studies have characterized these patients and their treatment outcomes using validated, self-reported, pain scales. OBJECTIVE: The objective of this study was to describe demographic and clinical characteristics of children admitted for DHE infusion, determine DHE treatment outcomes by means of numeric pain scale ratings, and explore associations between treatment outcomes and clinical characteristics. METHODS: Retrospective chart review was completed in patients ages 5-21 admitted for DHE infusion from January 2013 to July 2018 at a large, pediatric academic medical center and community-based satellite center. All primary headache types were included. RESULTS: A total of 200 unique admissions for DHE were available for analysis. Overall, patients were predominantly White (87.5%, 175/200) and female (80.0%, 160/200) with an average age of 15.4 years (SD 2.3). Common comorbidities included obesity (42.0%, 81/193), anxiety (41.0%, 82/200), and depression (20.0%, 40/200). The mean length of stay was 2.4 days (SD 1.10; range 1-8 days). Most headaches (65.0%, 130/200) met the International Classification of Headache Disorders, 3rd edition criteria for migraine, followed by new daily persistent headache (25.5%, 51/200). Mean DHE maximum dose was 5.3 (SD 2.17; range 0.5-14.5 mg) with most patients requiring 3.5-6.5 mg. DHE was typically terminated at six doses (range 1-15). The most frequently reported adverse event was nausea (5.5%, 11/200). There was no difference in pain severity at admission across headache types, with an average baseline pain score of 8.1 (SD 1.6). Posttreatment reduction in pain score was statistically significant (range: -3.2 to -4.9; each p < 0.001) across all headache types. Overall, 84.0% (168/200) of the patients had some improvement in pain. More than half of the patients (53.5%, 107/200) showed at least moderate improvement (≥50.0% reduction in pain score), and 18.0% (36/200) had full headache resolution. Limited patients (16.0%, 32/200) experienced no improvement in pain. CONCLUSIONS: Treatment with DHE resulted in at least some improvement for most patients regardless of headache type or number of doses. Clinical trials stratified by headache type and comorbid factors could help clarify treatment algorithms to optimize patient outcomes.


Assuntos
Di-Hidroergotamina/administração & dosagem , Transtornos da Cefaleia/tratamento farmacológico , Administração Intravenosa , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Estudos Retrospectivos , Resultado do Tratamento , Adulto Jovem
9.
Pediatr Blood Cancer ; 68(6): e29023, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33764667

RESUMO

BACKGROUND: The decision to initiate second-line treatment in children with immune thrombocytopenia (ITP) is complex and involves many different factors. METHODS: In this prospective, observational, longitudinal cohort study of 120 children from 21 centers, the factors contributing to the decision to start second-line treatments for ITP were captured. At study entry, clinicians were given a curated list of 12 potential reasons the patient required a second-line treatment. Clinicians selected all that applied and ranked the top three reasons. RESULTS: Quality of life (QOL) was the most frequently cited reason for starting a second-line therapy. Clinicians chose it as a reason to treat in 88/120 (73%) patients, as among the top three reasons in 68/120 (57%), and as the top reason in 32/120 (27%). Additional factors ranked as the top reason to start second-line treatment included severity of bleeding (22/120, 18%), frequency of bleeding (19/120, 16%), and severity of thrombocytopenia (18/120, 15%). Patients for whom QOL (p = .006) or sports participation (p = .02) were ranked reasons were more likely to have chronic ITP, whereas those for whom severity (p = .003) or frequency (p = .005) of bleeding were ranked reasons were more likely to have newly diagnosed or persistent ITP. Parental anxiety, though rarely the primary impetus for treatment, was frequently cited (70/120, 58%) as a contributing factor. CONCLUSION: Perceived QOL is the most frequently selected reason pediatric patients start second-line therapies for ITP. It is critical that studies of treatments for childhood ITP include assessments of their effects on QOL.


Assuntos
Púrpura Trombocitopênica Idiopática/tratamento farmacológico , Púrpura Trombocitopênica Idiopática/psicologia , Qualidade de Vida/psicologia , Adolescente , Criança , Pré-Escolar , Fadiga/psicologia , Feminino , Hemorragia/tratamento farmacológico , Hemorragia/prevenção & controle , Humanos , Lactente , Estudos Longitudinais , Masculino , Contagem de Plaquetas , Estudos Prospectivos , Índice de Gravidade de Doença , Falha de Tratamento
10.
J Res Nurs ; 26(1-2): 149-165, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35251236

RESUMO

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.

11.
Pediatr Transplant ; 25(2): e13889, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33118294

RESUMO

BACKGROUND: It is generally accepted that patients who have greater functional capacity are better candidates for lung transplantation. Accurate assessment of physical condition is important in identifying appropriate candidates for transplant. The focus of this study was to determine which measures of pretransplant physical condition correlate with positive post-transplant outcomes in children undergoing lung transplant. METHODS: A retrospective chart review was done on 44 patients, ages 5 to 21 years. The pretransplant data collected included functional status, 6MWT, ambulatory status, and mechanical support. Post-transplant outcome data included time on the ventilator, days in the ICU, length of hospitalization, and 12-month survival. RESULTS: Results were analyzed using Fisher exact and Kruskal-Wallis tests. Patients with limited ambulation had more days in the ICU compared to the most ambulatory group (P = .043). Patients independent or needing some help with ADL had less time on the ventilator compared to patients needing total help. (P = .014). Patients with 6MWT result greater than 500' had fewer ICU days (P = .044) and marginally better 12-month survival (P = .057). The 12-month survival of children needing invasive ventilatory support pretransplant was not significantly worse than those who did not; however, they required significantly more time on the ventilator (P = .004), days in ICU (P = .013), and longer hospitalization. DISCUSSION: This study demonstrated that pretransplant physical condition affects post-transplant outcomes in children. Measures associated with positive post-transplant outcomes were identified and could be beneficial in determining which patients are optimal candidates for lung transplant.


Assuntos
Transplante de Pulmão , Seleção de Pacientes , Aptidão Física , Atividades Cotidianas , Adolescente , Criança , Pré-Escolar , Exercício Físico , Feminino , Seguimentos , Humanos , Transplante de Pulmão/mortalidade , Masculino , Limitação da Mobilidade , Avaliação de Resultados em Cuidados de Saúde , Período Pré-Operatório , Estudos Retrospectivos , Teste de Caminhada , Adulto Jovem
12.
Diabetes Educ ; 46(3): 252-260, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32597383

RESUMO

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.


Assuntos
Diabetes Mellitus Tipo 1/terapia , Educadores em Saúde/psicologia , Transição para Assistência do Adulto , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
13.
Br J Haematol ; 191(1): 98-106, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32501532

RESUMO

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.


Assuntos
Fadiga , Púrpura Trombocitopênica Idiopática , Adolescente , Criança , Pré-Escolar , Fadiga/epidemiologia , Fadiga/etiologia , Fadiga/fisiopatologia , Fadiga/terapia , Feminino , Humanos , Lactente , Estudos Longitudinais , Masculino , Púrpura Trombocitopênica Idiopática/complicações , Púrpura Trombocitopênica Idiopática/epidemiologia , Púrpura Trombocitopênica Idiopática/fisiopatologia , Púrpura Trombocitopênica Idiopática/terapia
14.
JAMA Netw Open ; 3(3): e201804, 2020 03 02.
Artigo em Inglês | MEDLINE | ID: mdl-32232448

RESUMO

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.


Assuntos
Sistema ABO de Grupos Sanguíneos , Adenoidectomia , Hemorragia Pós-Operatória , Tonsilectomia , Adenoidectomia/efeitos adversos , Adenoidectomia/estatística & dados numéricos , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Hemorragia Pós-Operatória/sangue , Hemorragia Pós-Operatória/epidemiologia , Estudos Retrospectivos , Tonsilectomia/efeitos adversos , Tonsilectomia/estatística & dados numéricos , Adulto Jovem
15.
JPEN J Parenter Enteral Nutr ; 44(5): 895-902, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-31529507

RESUMO

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.


Assuntos
Leite Humano , Nutrientes , Animais , Quilotórax , Feminino , Humanos , Lactente
16.
Front Integr Neurosci ; 13: 31, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31427932

RESUMO

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.

17.
Am J Hematol ; 94(7): 741-750, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30945320

RESUMO

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.


Assuntos
Púrpura Trombocitopênica Idiopática , Qualidade de Vida , Receptores Fc/administração & dosagem , Proteínas Recombinantes de Fusão/administração & dosagem , Rituximab/administração & dosagem , Trombopoetina/administração & dosagem , Adolescente , Criança , Pré-Escolar , Intervalo Livre de Doença , Feminino , Humanos , Lactente , Masculino , Contagem de Plaquetas , Estudos Prospectivos , Púrpura Trombocitopênica Idiopática/sangue , Púrpura Trombocitopênica Idiopática/tratamento farmacológico , Taxa de Sobrevida , Fatores de Tempo
18.
Pediatr Transplant ; 23(3): e13380, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30786113

RESUMO

INTRODUCTION: This study describes psychotropic medication use in a pediatric and young adult solid organ transplant population. METHODS: We conducted a retrospective review of the lifetime incidence of psychotropic medication use and associated characteristics in patients seen over a 6-year period at a large pediatric transplant center utilizing univariate and multivariate statistical analyses. RESULTS: The lifetime incidence of psychotropic medication use was 36.5% in 393 patients. Transplant psychiatry provided psychopharmacological consultation to 21.9% of patients. Controlling for age and sex, there were significant associations between psychotropic use and thoracic organ disease (heart/lung) (AOR = 2.14; 95% CI: 1.2-3.8; P = 0.01), White race (P = 0.0002), histories of depressive/mood disorders (AOR = 3.68; 95% CI: 1.8-7.7; P = 0.0005), attention/learning disorders (AOR = 3.30; 95% CI: 1.6-6.9; P = 0.001), acute and post-traumatic stress disorders (AOR = 10.54; 95% CI: 2.6-42.8; P = 0.001), and experiencing bullying (AOR = 2.16; 95% CI: 1.03-4.55; P = 0.04). In unadjusted tests, significant associations were found between lifetime psychotropic usage and patient anxiety history (OR = 2.26; 95% CI: 1.5-3.5; P = 0.0002), end-of-life disease progression (OR = 3.04; 95% CI: 1.7-5.4; P = 0.0002), family psychiatric history (OR = 2.17; 95% CI: 1.4-3.4; P = 0.0007), and adherence concerns (OR = 2.67; 95% CI: 1.7-4.1; P < 0.0001). DISCUSSION: The lifetime incidence of psychotropic medication use among pediatric and young adult transplant patients is substantial. Patients with thoracic organ disease, end-of-life illness, individual/family psychiatric histories, trauma, and bullying histories have particularly high rates. Integrating child psychiatry as part of pediatric transplant teams should be an important consideration for the care of these patients.


Assuntos
Transplante de Órgãos/psicologia , Psicotrópicos/uso terapêutico , Adolescente , Adulto , Ansiedade/complicações , Ansiedade/tratamento farmacológico , Criança , Pré-Escolar , Comorbidade , Depressão/complicações , Depressão/tratamento farmacológico , Feminino , Humanos , Incidência , Masculino , Análise Multivariada , Pediatria , Estudos Retrospectivos , Adulto Jovem
19.
Pediatr Blood Cancer ; 66(6): e27663, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30786168

RESUMO

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.


Assuntos
Disparidades em Assistência à Saúde/normas , Renda/estatística & dados numéricos , Neoplasias/enfermagem , Enfermagem Oncológica/normas , Enfermagem Pediátrica/normas , Qualidade da Assistência à Saúde/normas , Padrão de Cuidado , Estudos Transversais , Países em Desenvolvimento , Humanos , Agências Internacionais , Prognóstico , Inquéritos e Questionários
20.
Pediatr Emerg Care ; 35(3): 170-175, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-28248838

RESUMO

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.


Assuntos
Comportamento do Adolescente/psicologia , Intervenção em Crise/métodos , Família/psicologia , Suicídio/psicologia , Adolescente , Serviço Hospitalar de Emergência , Feminino , Seguimentos , Hospitalização/estatística & dados numéricos , Humanos , Masculino , Relações Pais-Filho , Alta do Paciente/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Reincidência/estatística & dados numéricos , Prevenção do Suicídio
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