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1.
Dev Med Child Neurol ; 66(9): 1226-1233, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38327250

RESUMEN

AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC). METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents of CMC. Data collection and analysis occurred iteratively; constant comparison methods were used to identify themes describing the impact of disability-based discrimination in pediatric healthcare on the parents of CMC. RESULTS: Thirty participants from 15 US states were interviewed. Four themes were developed regarding the impact of disability-based discrimination in healthcare on parents. The themes were: (1) discrimination leads to a loss of trust in healthcare providers; (2) discrimination increases the burden of caregiving; (3) discrimination impacts parental well-being; and (4) racism and poverty-based discrimination amplifies disability-based discrimination. INTERPRETATION: The experience of discrimination toward their child results in loss of trust and therapeutic relationship between provider and parent, causes increased burden to the family, and contributes to decreased parental well-being. These experiences are magnified in minoritized families and in families perceived to have a lower socioeconomic status based on insurance type.


Asunto(s)
Padres , Investigación Cualitativa , Humanos , Padres/psicología , Femenino , Masculino , Niño , Adulto , Niños con Discapacidad , Racismo , Confianza , Estados Unidos , Adolescente , Discriminación Social , Personas con Discapacidad , Persona de Mediana Edad , Pobreza
2.
Pediatr Cardiol ; 2024 Jun 22.
Artículo en Inglés | MEDLINE | ID: mdl-38907871

RESUMEN

While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty pediatric palliative care (SPPC) involvement for children with heart disease. We conducted a systematic review using keywords related to palliative care, quality of life and care-satisfaction, and heart disease. We searched PubMed, EMBASE, CINAHL, CENTRAL and Web of Science in December 2023. Screening, data extraction and methodology followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations. Pairs of trained reviewers independently evaluated each article. All full texts excluded from the review were hand-screened for eligible references including systematic reviews in general pediatric populations. Two reviewers independently extracted: (1) study design; (2) methodology; (2) setting; (3) population; (4) intervention/exposure and control definition; (5) outcome measures; and (6) results. Of 4059 studies screened, 9 met inclusion criteria including two with overlapping patient data. Study designs were heterogenous, including only one randomized control and two historical control trials with SPPC as a prospective intervention. Overall, there was moderate to high risk of bias. Seven were single centers studies. In combined estimates, patients who received SPPC were more likely to have advance care planning documented (RR 2.7, [95%CI 1.6, 4.7], p < 0.001) and resuscitation limits (RR 4.0, [2.0, 8.1], p < 0.001), while half as likely to have active resuscitation at end-of-life ([0.3, 0.9], p = 0.032). For parental stress, receipt of SPPC improved scores by almost half a standard deviation (RR 0.48, 95%CI 0.10, 0.86) more than controls. Ultimately, we identified a paucity of high-quality data studying the influence of SPPC; however, findings correlate with literature in other pediatric populations. Findings suggest benefits of SPPC integration for patients with heart disease and their families.

3.
Cardiol Young ; 33(10): 1846-1852, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-36278475

RESUMEN

OBJECTIVES: Compare rates, clinical characteristics, and outcomes of paediatric palliative care consultation in children supported on extracorporeal membrane oxygenation admitted to a single-centre 16-bed cardiac or a 28-bed paediatric ICU. METHODS: Retrospective review of clinical characteristics and outcomes of children (aged 0-21 years) supported on extracorporeal membrane oxygenation between January, 2017 and December, 2019 compared by palliative care consultation. MEASUREMENTS AND RESULTS: One hundred children (N = 100) were supported with extracorporeal membrane oxygenation; 19% received a palliative care consult. Compared to non-consulted children, consulted children had higher disease severity measured by higher complex chronic conditions at the end of extracorporeal membrane oxygenation hospitalisation (5 versus. 3; p < 0.001), longer hospital length of stay (92 days versus 19 days; p < 0.001), and higher use of life-sustaining therapies after decannulation (79% versus 23%; p < 0.001). Consultations occurred mainly for longitudinal psychosocial-spiritual support after patient survived device deployment with a median of 27 days after cannulation. Most children died in the ICU after withdrawal of life-sustaining therapies regardless of consultation status. Over two-thirds of the 44 deaths (84%; n = 37) occurred during extracorporeal membrane oxygenation hospitalisation. CONCLUSIONS: Palliative care consultation was rare showing that palliative care consultation was not viewed as an acute need and only considered when the clinical course became protracted. As a result, there are missed opportunities to involve palliative care earlier and more frequently in the care of extracorporeal membrane survivors and non-survivors and their families.


Asunto(s)
Oxigenación por Membrana Extracorpórea , Niño , Humanos , Cuidados Paliativos , Unidades de Cuidado Intensivo Pediátrico , Corazón , Hospitalización , Estudios Retrospectivos
4.
Cardiol Young ; 31(9): 1458-1464, 2021 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-33597068

RESUMEN

OBJECTIVE: Retrospectively apply criteria from Center to Advance Palliative Care to a cohort of children treated in a cardiac ICU and compare children who received a palliative care consultation to those who were eligible for but did not receive one. METHODS: Medical records of children admitted to a cardiac ICU between January 2014 and June 2017 were reviewed. Selected criteria include cardiac ICU length of stay >14 days and/or ≥ 3 hospitalisations within a 6-month period. MEASUREMENTS AND RESULTS: A consultation occurred in 17% (n = 48) of 288 eligible children. Children who received a consult had longer cardiac ICU (27 days versus 17 days; p < 0.001) and hospital (91 days versus 35 days; p < 0.001) lengths of stay, more complex chronic conditions at the end of first hospitalisation (3 versus1; p < 0.001) and the end of the study (4 vs.2; p < 0.001), and higher mortality (42% versus 7%; p < 0.001) when compared with the non-consulted group. Of the 142 pre-natally diagnosed children, only one received a pre-natal consult and 23 received it post-natally. Children who received a consultation (n = 48) were almost 2 months of age at the time of the consult. CONCLUSIONS: Less than a quarter of eligible children received a consultation. The consultation usually occurred in the context of medical complexity, high risk of mortality, and at an older age, suggesting potential opportunities for more and earlier paediatric palliative care involvement in the cardiac ICU. Screening criteria to identify patients for a consultation may increase the use of palliative care services in the cardiac ICU.


Asunto(s)
Unidades de Cuidados Intensivos , Cuidados Paliativos , Anciano , Niño , Humanos , Unidades de Cuidado Intensivo Pediátrico , Tiempo de Internación , Prevalencia , Derivación y Consulta , Estudios Retrospectivos
5.
Pediatr Crit Care Med ; 21(5): 423-429, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-32142011

RESUMEN

OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DESIGN: A retrospective single-center study. SETTING: A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital. PATIENTS: Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017. MEASUREMENTS AND MAIN RESULTS: Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult. CONCLUSIONS: Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied.


Asunto(s)
Cardiopatías , Cuidado Terminal , Niño , Cardiopatías/terapia , Humanos , Unidades de Cuidados Intensivos , Tiempo de Internación , Cuidados Paliativos , Estudios Retrospectivos
6.
J Pediatr ; 214: 71-78.e2, 2019 11.
Artículo en Inglés | MEDLINE | ID: mdl-31402138

RESUMEN

OBJECTIVE: To evaluate the association between neonatal neurobehavioral state and oral feeding outcomes following congenital heart disease (CHD) surgery. STUDY DESIGN: This single center retrospective cohort study described neonates undergoing cardiac surgery evaluated perioperatively with the Neonatal Intensive Care Unit Network Neurobehavioral Scale (NNNS). We compared NNNS attention scores, which evaluates neonates' ability to orient and fixate on stimuli, with the feeding outcomes percentage of feeds taken orally at discharge and time to reach full oral feeds using regression analyses. Models were constructed for both preoperative and postoperative NNNS evaluations. RESULTS: Between August 2015 and October 2017, 124 neonates underwent 89 preoperative and 97 postoperative NNNS evaluations. In multivariable Cox regression, higher preoperative NNNS attention scores were associated with a shorter time to achieve full oral feeds (hazard ratio 1.4; 95% CI 1.0‒2.0; P = .047). This relationship was not seen for post-operative NNNS attention scores or percentage of oral feeds at discharge. Depending on the model, younger age at surgery, increased ventilator days, increased length of stay, and single or 2-ventricle anatomy with aortic arch obstruction were associated with lower percentage of oral feeds at discharge and/or delay in full oral feeds. CONCLUSIONS: Higher neonatal attention before cardiac surgery is associated with improved feeding outcomes. Prospective assessment of neonatal neurobehavioral state may be a novel approach to predict and target interventions to improve feeding outcomes in CHD. Future studies should examine the impact of intrinsic neurodevelopmental delay vs environmental adaptation on the neurobehavioral state of neonates with CHD.


Asunto(s)
Conducta Alimentaria/psicología , Cardiopatías Congénitas/psicología , Conducta del Lactante/psicología , Atención , Femenino , Estudios de Seguimiento , Cardiopatías Congénitas/cirugía , Humanos , Recién Nacido , Masculino , Pruebas Neuropsicológicas , Periodo Posoperatorio , Periodo Preoperatorio , Estudios Retrospectivos
7.
Pediatr Cardiol ; 40(2): 339-348, 2019 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-30288600

RESUMEN

Respiratory viral infections in infants undergoing congenital heart surgery lead to prolonged intubation time, hospital (HLOS) and cardiac intensive care unit length of stay (CICU LOS). The objective of this study was to evaluate the prevalence of respiratory viruses using molecular testing in otherwise healthy infants presenting for low complexity heart surgery, and to evaluate the impact of a positive viral screen and study questionnaire on post-surgical HLOS, CICU LOS, intubation time, respiratory complications, and oxygen therapy at home discharge. Sixty-nine infants (1 month to 1 year) undergoing cardiac surgery from November to May of the years 2012 to 2014 were prospectively enrolled, surveyed and tested. We compared the outcomes of positive molecular testing and positive study questionnaire to test negative subjects. We also evaluated the predictive value of study questionnaire in identification of viruses by molecular testing. Of the 69 enrolled infants, 58 had complete information available for analysis. 17 (30%) infants tested positive by molecular testing for respiratory pathogens. 38 (65%) had a "positive" questionnaire. Among the 20 viruses detected, Human Rhinovirus was the most common 12 (60%). Seven (12%) of the 58 patients developed respiratory symptoms following surgery prompting molecular testing. Four of these tested positive for a respiratory virus post-surgically. Neither positive molecular testing nor a positive questionnaire prior to surgery was associated with greater post-operative HLOS, CICU LOS, intubation time, respiratory complications, or use of oxygen at discharge compared to negative testing. The questionnaire poorly predicted positive molecular testing. Routine screening for respiratory viruses in asymptomatic infants may not be an effective strategy to predict infants at risk of post-operative complications.


Asunto(s)
Procedimientos Quirúrgicos Cardíacos/efectos adversos , Cardiopatías Congénitas/cirugía , Infecciones del Sistema Respiratorio/epidemiología , Virosis/epidemiología , Femenino , Humanos , Lactante , Recién Nacido , Unidades de Cuidados Intensivos/estadística & datos numéricos , Intubación Intratraqueal/estadística & datos numéricos , Tiempo de Internación/estadística & datos numéricos , Masculino , Tamizaje Masivo/métodos , Terapia por Inhalación de Oxígeno/estadística & datos numéricos , Complicaciones Posoperatorias/epidemiología , Complicaciones Posoperatorias/virología , Prevalencia , Estudios Prospectivos , Infecciones del Sistema Respiratorio/diagnóstico , Infecciones del Sistema Respiratorio/virología , Encuestas y Cuestionarios , Resultado del Tratamiento , Estados Unidos/epidemiología , Virosis/diagnóstico , Virosis/etiología
8.
Cardiol Young ; 28(6): 816-825, 2018 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-29690945

RESUMEN

OBJECTIVE: Our primary goal was to decrease time to resolution of postoperative chylothorax as demonstrated by total days of chest tube utilisation through development and implementation of a management protocol. METHODS: A chylothorax management protocol was implemented as a quality improvement project at a tertiary-care paediatric hospital in July, 2015. Retrospective analysis was completed on patients aged 0-17 years diagnosed with chylothorax within 30 days of cardiac surgery in a pre-protocol cohort (February, 2014 to June, 2015, n=20) and a post-protocol cohort (July, 2015 to March, 2016, n=22).Measurements and resultsPatient characteristics were similar before and after protocol implementation. Duration of mechanical ventilation and cardiac ICU and hospital lengths of stay were unchanged between cohorts. Following protocol implementation, total duration of chest tube utilisation decreased from 12 to 7 days (p=0.047) with a decrease in maximum days of chest tube utilisation from 44 to 13 days. Duration of medium-chain triglyceride feeds decreased from 42 days to 31 days (p=0.01). In total, three patients in the post-protocol cohort underwent additional surgical procedures to treat chylothorax with subsequent resolution of chylothorax within 24 hours. There were no chest tube re-insertions or re-admissions related to chylothorax in either the pre- or post-protocol cohorts. Protocol compliance was 81%. CONCLUSIONS: Adoption of a chylothorax management protocol is feasible, and in our small cohort of patients implementation led to a significant decrease in the duration of chest tube utilisation, while eliminating practice variability among providers.


Asunto(s)
Tubos Torácicos/estadística & datos numéricos , Quilotórax/diagnóstico , Quilotórax/terapia , Complicaciones Posoperatorias/diagnóstico , Complicaciones Posoperatorias/terapia , Procedimientos Quirúrgicos Cardíacos/efectos adversos , Quilotórax/etiología , Drenaje/métodos , Femenino , Hospitales Pediátricos , Humanos , Lactante , Recién Nacido , Masculino , Complicaciones Posoperatorias/etiología , Estudios Retrospectivos , Factores de Tiempo , Resultado del Tratamiento
9.
Pediatr Crit Care Med ; 18(5): 461-468, 2017 May.
Artículo en Inglés | MEDLINE | ID: mdl-28350561

RESUMEN

OBJECTIVES: To evaluate whether a quality improvement intervention reduces sternal wound infection rates in children after cardiac surgery. DESIGN: This is a pre- and postintervention quality improvement study. SETTING: A 16-bed cardiac ICU in a university-affiliated pediatric tertiary care children's hospital. PATIENTS: All patients undergoing cardiac surgery via median sternotomy from January 2010 to December 2014 are included. The sternal wound infection rates for primary closure and delayed sternal closure are reported per 100 sternotomies. The hospital-acquired infection records were used to identify preintervention cases, while postintervention cases were collected prospectively. INTERVENTION: Implementation of a sternal wound prevention bundle during the preoperative, intraoperative, and postoperative periods for cardiac surgical cases. MEASUREMENTS AND MAIN RESULTS: During the preintervention period, 32 patients (3.8%) developed sternal wound infection, whereas only 19 (2.1%) developed sternal wound infection during the postintervention period (p = 0.04). The rates of sternal wound infection following primary closure were not significantly different pre- and postintervention (2.4% vs 1.6%; p = 0.35). However, patients with delayed sternal closure had significantly lower postintervention infection rates (10.6% vs 3.9%; p = 0.02). CONCLUSIONS: Implementation of a sternal wound prevention bundle during the perioperative period was associated with lower sternal wound infection rates in surgeries with delayed sternal closure.


Asunto(s)
Procedimientos Quirúrgicos Cardíacos , Infecciones por Bacterias Gramnegativas/prevención & control , Infecciones por Bacterias Grampositivas/prevención & control , Atención Perioperativa/normas , Mejoramiento de la Calidad/estadística & datos numéricos , Esternotomía , Infección de la Herida Quirúrgica/prevención & control , Preescolar , Femenino , Infecciones por Bacterias Gramnegativas/epidemiología , Infecciones por Bacterias Gramnegativas/etiología , Infecciones por Bacterias Grampositivas/epidemiología , Infecciones por Bacterias Grampositivas/etiología , Humanos , Lactante , Recién Nacido , Masculino , Paquetes de Atención al Paciente , Atención Perioperativa/métodos , Estudios Prospectivos , Estudios Retrospectivos , Infección de la Herida Quirúrgica/epidemiología , Resultado del Tratamiento
10.
Pediatr Cardiol ; 38(7): 1505-1514, 2017 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-28770308

RESUMEN

Hemoglobin levels (Hgb) of infants with a single ventricle (SV) are traditionally maintained high to maximize oxygen-carrying capacity during stage 1 palliation (S1P), stage 2 palliation (S2P), and between stages (IS). A single-center observational cohort study was performed to determine if red blood cell transfusion during the convalescent phase of the S1P (late S1P transfusion) to achieve higher Hgb is associated with benefits during the IS including improved growth and decreased acute medical events. 137 infants <1 year with SV with SIP undergoing care from January 2008 to June 2015 were retrospectively evaluated. 78 (57%) infants received a late S1P transfusion. Median Hgb at S1P discharge was 15.9 g/dL (IQR 14.7-17.1) and median Hgb S2P at admission was 15.3 g/dL (IQR 14-16.3). Median daily weight gain was 22 g/day during IS (IQR 17-26) and median daily length gain was 0.09 cm (IQR 0.06-0.11). Hgb at SIP discharge was not associated with IS growth or fewer IS acute events. However, late S1P transfusions were associated with illness severity at S1P and more complicated S1P care. Our data suggest that SV infants after S1P, who are steadily recovering, do not benefit from late transfusion to raise their hemoglobin level at discharge.


Asunto(s)
Transfusión de Eritrocitos/métodos , Cardiopatías Congénitas/sangre , Hemoglobinas/análisis , Desarrollo Infantil , Estudios de Cohortes , Transfusión de Eritrocitos/efectos adversos , Procedimiento de Fontan/efectos adversos , Procedimiento de Fontan/métodos , Cardiopatías Congénitas/complicaciones , Cardiopatías Congénitas/terapia , Ventrículos Cardíacos/anomalías , Ventrículos Cardíacos/cirugía , Humanos , Lactante , Recién Nacido , Cuidados Paliativos/métodos , Alta del Paciente , Estudios Retrospectivos , Aumento de Peso
11.
Pediatr Crit Care Med ; 17(11): 1055-1063, 2016 11.
Artículo en Inglés | MEDLINE | ID: mdl-27662564

RESUMEN

OBJECTIVE: To determine whether judicious blood testing impacts timing or amount of packed RBC transfusions in infants after heart surgery. DESIGN: A retrospective study comparing before and after initiation of a quality improvement process. SETTING: A university-affiliated cardiac ICU at a tertiary care children's hospital. PATIENTS: Infants less than 1 year old with Risk Adjustment for Congenital Heart Surgery category 4, 5, 6, or d-transposition of great arteries (Risk Adjustment for Congenital Heart Surgery 3) consecutively treated during 2010 through 2013. INTERVENTION: A quality improvement process implemented in 2011 to decrease routine laboratory testing after surgery. MEASUREMENTS AND MAIN RESULTS: Fifty-two infants preintervention and 214 postintervention had similar age, weight, proportion of cyanotic lesions, and surgical complexity. Infants with single versus biventricular physiology were compared separately. The number of laboratory tests per patient adjusted for cardiac ICU length of stay (laboratory tests/patient/day) was significantly lower in postintervention populations for single and biventricular groups (9 vs 15 and 10 vs 15, respectively; p < 0.001). The proportion of single ventricle patients transfused post- and preintervention was not statistically different (72% vs 90%; p = 0.130). Transfusion in the biventricular groups was the same over time (65% vs 65%). Time to first transfusion was significantly longer in the postintervention single ventricle group (4 vs 1 d; p < 0.001), and was not statistically different in the biventricular patients (4 vs 7 d; p = 0.058). The median hematocrit level at first transfusion was significantly lower (37% vs 40%; p = 0.004) postintervention in the cyanotic population, but did not differ in the biventricular group (31% vs 31%; p = 0.840). CONCLUSION: In infants after heart surgery, blood testing targeted to individual needs significantly decreased the number of blood tests, but did not significantly decrease postoperative blood transfusion.


Asunto(s)
Procedimientos Quirúrgicos Cardíacos , Transfusión de Eritrocitos/normas , Cardiopatías Congénitas/cirugía , Cuidados Posoperatorios/normas , Mejoramiento de la Calidad , Procedimientos Innecesarios/estadística & datos numéricos , Transfusión de Eritrocitos/estadística & datos numéricos , Hematócrito/normas , Hematócrito/estadística & datos numéricos , Pruebas Hematológicas/normas , Pruebas Hematológicas/estadística & datos numéricos , Humanos , Lactante , Recién Nacido , Estimación de Kaplan-Meier , Cuidados Posoperatorios/métodos , Cuidados Posoperatorios/estadística & datos numéricos , Modelos de Riesgos Proporcionales , Estudios Retrospectivos
12.
Pediatr Crit Care Med ; 15(8): 756-61, 2014 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-25068246

RESUMEN

OBJECTIVES: To safely optimize blood testing and costs for pediatric cardiac surgical patients without adversely impacting patient outcomes. DESIGN: This is a quality improvement cohort project with pre- and postintervention groups. SETTING: University-affiliated pediatric cardiac ICU in a tertiary care children's hospital. PATIENTS: All patients were surgical patients for whom Risk Adjustment for Congenital Heart Surgery categories allowed for stratification by complexity. The preintervention group was treated in 2010 and the postintervention group in 2011. INTERVENTIONS: Laboratory ordering processes were analyzed, and practice changed to limit standing blood test orders and requires individualized ordering. MEASUREMENTS AND MAIN RESULTS: Three hundred nineteen patients were studied in 2010 and 345 in 2011. Groups were similar in median age, weight, length of stay (ICU length of stay), and Risk Adjustment for Congenital Heart Surgery category. There was a reduction in the total blood tests per patient (24 vs 38; p < 0.0001) and length of stay adjusted tests per patient-day (10.4 vs 14.4; p = 0.0001) in the postintervention group. The largest test reductions were blood gases and single electrolytes. Adverse outcomes, such as extubation failure (6.4% vs 5.6%), central catheter-associated bloodstream infection (2.2 vs 1.5), and hospital mortality (0.6% vs 0.6%), were not significantly different between the groups. Cost analysis demonstrated an overall laboratory cost savings of 32%. In addition, the volume of packed RBC transfusions was also significantly decreased in the postintervention group among the most complex patients (Risk Adjustment for Congenital Heart Surgery, 6). CONCLUSIONS: Blood testing rates were safely decreased in postoperative pediatric cardiac patients by changing laboratory ordering practices. In addition, packed RBC transfusion was decreased among the most complex patients.


Asunto(s)
Análisis Químico de la Sangre/estadística & datos numéricos , Cardiopatías Congénitas/cirugía , Unidades de Cuidado Intensivo Pediátrico/normas , Cuidados Posoperatorios/normas , Mejoramiento de la Calidad , Procedimientos Innecesarios , Extubación Traqueal , Análisis Químico de la Sangre/economía , Pruebas de Coagulación Sanguínea/economía , Pruebas de Coagulación Sanguínea/estadística & datos numéricos , Procedimientos Quirúrgicos Cardíacos , Electrólitos/sangre , Transfusión de Eritrocitos/estadística & datos numéricos , Hemoglobinometría/economía , Hemoglobinometría/estadística & datos numéricos , Humanos , Lactante , Recién Nacido , Intubación Intratraqueal , Longevidad , Evaluación de Procesos y Resultados en Atención de Salud , Estudios Retrospectivos , Medición de Riesgo , Tiempo
13.
Pediatr Cardiol ; 35(8): 1387-94, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-24939564

RESUMEN

Human rhinovirus (HRV), the most common cause of upper respiratory infection in children, can present as bronchiolitis, pneumonia, or asthma exacerbations. The impact of HRV in infants and toddlers with congenital heart disease is poorly defined. A case-control study was performed to compare the clinical course for 19 young children with respiratory symptoms who tested positive for rhinovirus after heart surgery with that of 56 matched control subjects. The control subjects were matched by surgical repair, age, weight, and time of the year. Patients with known HRVs before surgery and control subjects with respiratory symptoms or positive test results for viruses were excluded from the study. Human rhinovirus infection was associated with more than a tenfold increase in the odds of noninvasive ventilation after extubation (odds ratio [OR] 11.45; 95 % confidence interval [CI] 3.97-38.67), a 12-fold increase in the probability of extubation failure (OR 12.84; 95 % CI 2.93-56.29), and increased use of pulmonary medications including bronchodilator and nitric oxide (p < 0.001). As a result, the hospital length of stay (HLOS) was two times longer than for the control subjects (p < 0.001), and the cardiac intensive care unit (CICU) length of stay (CICU LOS) was three times longer (p < 0.0001). The intubation time was significantly longer (p < 0.001), and the CICU respiratory charges were significantly greater (p = 0.001) for the infected patients. Human rhinovirus increases resource use and prolongs postoperative recovery after pediatric heart surgery. Surgery timing should be delayed for patients with rhinovirus if possible.


Asunto(s)
Procedimientos Quirúrgicos Cardíacos/efectos adversos , Recursos en Salud/economía , Recursos en Salud/estadística & datos numéricos , Cardiopatías Congénitas/cirugía , Periodo Posoperatorio , Infecciones del Sistema Respiratorio/virología , Rhinovirus/patogenicidad , Extubación Traqueal/métodos , Extubación Traqueal/estadística & datos numéricos , Broncodilatadores/administración & dosificación , Estudios de Casos y Controles , Femenino , Cardiopatías Congénitas/epidemiología , Humanos , Lactante , Recién Nacido , Unidades de Cuidados Intensivos/economía , Unidades de Cuidados Intensivos/estadística & datos numéricos , Tiempo de Internación/estadística & datos numéricos , Masculino , Óxido Nítrico/administración & dosificación , Ventilación no Invasiva/estadística & datos numéricos , Infecciones del Sistema Respiratorio/epidemiología , Factores de Riesgo
14.
J Palliat Med ; 27(2): 236-240, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37878371

RESUMEN

Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods: Descriptive implementation of a structured, peer-to-peer bereavement support program for intensive care unit (ICU) staff at a tertiary children's hospital. Results: Thirty-five virtual sessions were held over the period of one year.Through these sessions, participants shared perspectives and normalized reactions, and explored potential coping strategies. Post-session feedback surveys demonstrated the negative impact of a death on the personal or work life of ICU staff. Additionally, nearly all reported some level of burnout. Conclusions: The sessions were feasible and positively impacted staff coping and well-being. Barriers and facilitators to session attendance, as well as suggestions for improvement, were also explored. Implications for practice and future research are discussed. No clinical trial registration is applicable.


Asunto(s)
Aflicción , Agotamiento Profesional , Cuidado Terminal , Niño , Humanos , Pesar , Unidades de Cuidados Intensivos , Personal de Salud
15.
J Pediatr Intensive Care ; 12(1): 63-70, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36742256

RESUMEN

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit ( n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies ( n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.

16.
Pediatrics ; 152(1)2023 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-37357731

RESUMEN

BACKGROUND AND OBJECTIVES: Disability-based discrimination in health care can lead to low quality of care, limited access to care, and negative health consequences. Yet, little is known regarding the experiences of disability-based discrimination in health care for children with medical complexity and disability. An understanding of disability-based discrimination in pediatrics is needed to drive change and improve care. METHODS: We conducted in-depth, semistructured interviews with caregivers of children with medical complexity and disability. Participants were purposefully recruited through national advocacy and research networks. Interviews were conducted via video conferencing, recorded, and transcribed. Data collection and analysis occurred iteratively. An inductive thematic analysis approach with constant comparison methods was used to identify themes that form a conceptual framework of disability-based discrimination in health care. RESULTS: Thirty participants from diverse backgrounds were interviewed. Six themes emerged, forming a conceptual framework of disability-based discrimination in health care. Three themes described drivers of discrimination: lack of clinician knowledge, clinician apathy, and clinician assumptions. Three themes described manifestations of discrimination: limited accessibility to care, substandard care, and dehumanization. CONCLUSIONS: Children with medical complexity may face disability-based discrimination in health care. Themes describing the drivers and manifestations of discrimination offer a conceptual framework of disability-based discrimination. Understanding the drivers and acknowledging perceived manifestations can provide insight into improving patient care for children with disabilities.


Asunto(s)
Personas con Discapacidad , Niño , Humanos , Discriminación Social , Cuidadores , Accesibilidad a los Servicios de Salud , Discriminación Percibida , Investigación Cualitativa
17.
Hosp Pediatr ; 12(6): 617-625, 2022 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-35531629

RESUMEN

OBJECTIVES: To assess the biochemical and clinical outcomes of hospitalized children who received prophylactic enoxaparin. METHODS: We conducted a retrospective observational study of hospitalized children aged <18 years who received prophylactic enoxaparin against hospital-acquired venous thromboembolism (HA-VTE). Weight-based enoxaparin dosing was administered using a pharmacy-driven protocol, which later included a low molecular weight, anti-Xa level directed-dose adjustment strategy. Primary biochemical and clinical outcomes were achievement of goal anti-Xa range of 0.2 to 0.5 IU/mL and development of HA-VTE, respectively. Secondary clinical outcome was development of clinically relevant bleed. RESULTS: We analyzed 194 children with 13 (6.7%) infants aged <1 year and 181 (93.3%) older children aged ≥1 year. After the initial dose, only 1 (11.1%) infant, but 62 (57.9%) older children, achieved goal. Median number of anti-Xa levels until goal was 2 (interquartile range: 2-3) in infants and 1 (interquartile range: 1-2) in older children (P = .01). HA-VTE developed in 2 (15.4%) infants and 9 (5.0%) older children. Among children with anti-Xa level, HA-VTE developed less frequently in children who achieved (2.1%) than in those who did not achieve (13.6%) goal (P = .046). A total of 4 (2.1%) older children and no infants developed clinically relevant bleed. Among children with anti-Xa level, frequency of bleeding was comparable between children who did (3.2%) and did not achieve (0%) goal (P >.99). CONCLUSIONS: Our findings suggest the effectiveness and safety of an anti-Xa level directed strategy of prophylactic enoxaparin. However, this strategy should be investigated in prospective controlled studies.


Asunto(s)
Enoxaparina , Tromboembolia Venosa , Adolescente , Anticoagulantes/uso terapéutico , Niño , Niño Hospitalizado , Enoxaparina/uso terapéutico , Inhibidores del Factor Xa , Hemorragia/inducido químicamente , Hemorragia/prevención & control , Humanos , Lactante , Estudios Prospectivos , Estudios Retrospectivos , Tromboembolia Venosa/prevención & control
18.
J Palliat Med ; 25(6): 952-957, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35319287

RESUMEN

Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective: Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Methods: Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Results: Of 291 eligible respondents, 48% (n = 140) completed the survey and 16% (n = 47) answered an open-ended question. Benefits included support in decision-making (n = 98; 70%) and identification of goals of care (n = 89; 64%). Barriers included perception of giving up on families (n = 59; 42%) and poor acceptability by other team members (n = 58; 41%). Respondents endorsed communication with the primary ICU team before (n = 122; 87%) and after (n = 129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusions: Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.


Asunto(s)
Oxigenación por Membrana Extracorpórea , Cuidados Paliativos , Niño , Estudios Transversales , Femenino , Humanos , Cuidados Paliativos/métodos , Derivación y Consulta , Encuestas y Cuestionarios , Estados Unidos
19.
Pediatr Qual Saf ; 3(3): e080, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30229192

RESUMEN

INTRODUCTION: Feeding difficulties and malnutrition are important challenges when caring for newborns with critical congenital heart disease (CCHD) without clear available guidelines for providers. This study describes the utilization of a feeding protocol with the focus on standardization, feeding modality, and total parenteral nutrition (TPN) utilization postoperatively. METHODS: Patients included neonates with CCHD undergoing complex biventricular repair using cardiopulmonary bypass. Data were collected in 2013 preintervention and from 2015 to 2017 postintervention. The feeding protocol outlined guidelines for and postoperative use of TPN. Adverse outcomes data included rates of central line-associated bloodstream infections, necrotizing enterocolitis, chylothorax, and vocal cord dysfunction. Balance outcomes measured were weight for age Z-score at discharge, number of abdominal radiographs obtained, readmission within 90 days, and central venous line utilization. RESULTS: We included a total of 121 neonates: 49 in the preintervention group and 72 in the postintervention group. The protocol standardized feeding practices in CCHD neonates undergoing surgery with improved compliance from 70% early in the study period to 90% at the end of the study. Infants were fed enterally more preoperatively (86% versus 67%; P = 0.023), reached a fluid goal sooner (63 hours versus 72 hours; P = 0.035), and postoperative duration of TPN usage was significantly shorter in the postintervention period (48 hours versus 62 hours; P = 0.041) with no increase in adverse outcome events or unintended consequences. CONCLUSIONS: By implementing a feeding protocol, we reduced practice variation among providers, increased the number of patients fed enterally preoperatively and reduced postoperative use of TPN without increased complications.

20.
Pediatr Qual Saf ; 2(6): e047, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-30229183

RESUMEN

INTRODUCTION: Frequent blood testing increases risk of iatrogenic anemia, infection, and blood transfusion. This study describes 3 years of sustained blood testing reduction from a quality improvement (QI) initiative which began in 2011. METHODS: The cohort consisted of postop children whose surgery had a Risk Adjustment for Congenital Heart Surgery (RACHS) classification consecutively admitted to a tertiary Cardiac Intensive Care Unit. Data were collected for a 2010 preintervention, 2011 intervention, and 2012-13 postintervention periods, tabulating common laboratory studies per patient (labs/pt) and adjusted for length of stay (labs/pt/d). The QI initiative eliminated standing laboratory orders and changed to testing based on individualized patient condition. Adverse outcomes data were collected including reintubation, central line-associated bloodstream infections and hospital mortality. Safety was measured by the number of abnormal laboratory studies, electrolyte replacements, code blue events, and arrhythmias. RESULTS: A total of 1169 patients were enrolled (303 preintervention, 315 intervention, and 551 postintervention periods). The number of labs/pt after the QI intervention was sustained (38 vs. 23 vs. 23) and labs/pt/d (15 vs. 11 vs. 10). The postintervention group had greater surgical complexity (P = 0.002), were significantly younger (P = 0.002) and smaller (P = 0.008). Children with RACHS 3-4 classification in the postintervention phase had significant increased risk of reintubation and arrhythmias. CONCLUSIONS: After the implementation of a QI initiative, blood testing was reduced and sustained in young, complex children after heart surgery. This may or may not have contributed to greater reintubation and arrhythmias among patients with RACHS 3-4 category procedures.

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