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1.
Crit Care Explor ; 5(12): e1013, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38053749

RESUMO

BACKGROUND: Postoperative pediatric congenital heart patients are predisposed to develop low-cardiac output syndrome. Serum lactate (lactic acid [LA]) is a well-defined marker of inadequate systemic oxygen delivery. OBJECTIVES: We hypothesized that a near real-time risk index calculated by a noninvasive predictive analytics algorithm predicts elevated LA in pediatric patients admitted to a cardiac ICU (CICU). DERIVATION COHORT: Ten tertiary CICUs in the United States and Pakistan. VALIDATION COHORT: Retrospective observational study performed to validate a hyperlactatemia (HLA) index using T3 platform data (Etiometry, Boston, MA) from pediatric patients less than or equal to 12 years of age admitted to CICU (n = 3,496) from January 1, 2018, to December 31, 2020. Patients lacking required data for module or LA measurements were excluded. PREDICTION MODEL: Physiologic algorithm used to calculate an HLA index that incorporates physiologic data from patients in a CICU. The algorithm uses Bayes' theorem to interpret newly acquired data in a near real-time manner given its own previous assessment of the physiologic state of the patient. RESULTS: A total of 58,168 LA measurements were obtained from 3,496 patients included in a validation dataset. HLA was defined as LA level greater than 4 mmol/L. Using receiver operating characteristic analysis and a complete dataset, the HLA index predicted HLA with high sensitivity and specificity (area under the curve 0.95). As the index value increased, the likelihood of having higher LA increased (p < 0.01). In the validation dataset, the relative risk of having LA greater than 4 mmol/L when the HLA index is less than 1 is 0.07 (95% CI: 0.06-0.08), and the relative risk of having LA less than 4 mmol/L when the HLA index greater than 99 is 0.13 (95% CI, 0.12-0.14). CONCLUSIONS: These results validate the capacity of the HLA index. This novel index can provide a noninvasive prediction of elevated LA. The HLA index showed strong positive association with elevated LA levels, potentially providing bedside clinicians with an early, noninvasive warning of impaired cardiac output and oxygen delivery. Prospective studies are required to analyze the effect of this index on clinical decision-making and outcomes in pediatric population.

2.
Am J Med Genet A ; 185(3): 966-977, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33381915

RESUMO

Children with trisomy 13 and 18 (previously deemed "incompatible with life") are living longer, warranting a comprehensive overview of their unique comorbidities and complex care needs. This Review Article provides a summation of the recent literature, informed by the study team's Interdisciplinary Trisomy Translational Program consisting of representatives from: cardiology, cardiothoracic surgery, neonatology, otolaryngology, intensive care, neurology, social work, chaplaincy, nursing, and palliative care. Medical interventions are discussed in the context of decisional-paradigms and whole-family considerations. The communication format, educational endeavors, and lessons learned from the study team's interdisciplinary care processes are shared with recognition of the potential for replication and implementation in other care settings.


Assuntos
Cromossomos Humanos Par 18 , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente , Síndrome da Trissomia do Cromossomo 13 , Trissomia , Defesa da Criança e do Adolescente , Tomada de Decisão Clínica , Deficiências do Desenvolvimento/genética , Deficiências do Desenvolvimento/terapia , Nutrição Enteral , Feminino , Monitorização Fetal , Cardiopatias Congênitas/genética , Cardiopatias Congênitas/terapia , Humanos , Alimentos Infantis , Transtornos da Nutrição do Lactente/prevenção & controle , Recém-Nascido , Terapia Intensiva Neonatal/métodos , Comunicação Interdisciplinar , Expectativa de Vida , Masculino , Hipotonia Muscular/genética , Hipotonia Muscular/terapia , Neoplasias/complicações , Diagnóstico Pré-Natal , Relações Profissional-Família , Síndrome da Trissomia do Cromossomo 13/diagnóstico , Síndrome da Trissomia do Cromossomo 13/embriologia , Síndrome da Trissomia do Cromossomo 13/terapia
3.
Pediatr Qual Saf ; 4(4): e183, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31572885

RESUMO

Despite the use of sterile technique for indwelling urinary catheter insertion, as well as use of the defined catheter-associated urinary tract infection (CAUTI) bundle elements per Children's Hospitals' Solutions for Patient Safety, the CAUTI rate in the pediatric intensive care unit (PICU) at a free-standing pediatric hospital was increasing. In 2017, the PICU accounted for 87% of the organization's CAUTIs and 65% of the total indwelling catheter device days. With an important risk factor for CAUTIs being the duration of catheterization, the indication for catheters became an organizational executive priority. METHODS: An early 2017 review of the bundle elements identified that the indication for catheterization was not consistently addressed in daily patient rounds. A multidisciplinary project team applying the Plan, Do, Check, Act methodology developed an evidenced-based, nurse-driven indwelling urinary catheter removal protocol. This protocol allows nursing autonomy when removing a catheter by providing clinical indications for catheter use and promoting prompt removal when no longer indicated. RESULTS: Indwelling urinary catheter device days in the PICU decreased by 28% within 6 months of protocol implementation. The PICU CAUTI rate declined from 4.8 (per 1,000 device days) in 2017 to 0.8 in 2018, 1 year after protocol implementation. CONCLUSIONS: Providing the bedside nurse with an evidence-based protocol that is driven by specific patient indications and diagnoses allows them to practice autonomously in catheter removal. Prompt removal of indwelling urinary catheters results in decreased device days and decreased incidence of CAUTIs.

4.
J Hosp Palliat Nurs ; 20(3): 260-265, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29910692

RESUMO

The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage (P < .02) correlated with the gap in home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.

5.
J Palliat Med ; 21(2): 241-244, 2018 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-28956672

RESUMO

BACKGROUND: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance. OBJECTIVE: The purpose of this study was to longitudinally evaluate the effect of time on quality of life and family impact for pediatric palliative care patients across all diagnoses and ages. DESIGN: This prospective quality-of-life study included administration of a 23-item PedsQL™ Measurement Model to evaluate for physical, emotional, social, and cognitive dimensions of the child's quality of life and a 36-item PedsQL Family Impact Module to assess for the familial impact at time of initial palliative care consultation, Month 6, and Month 12. SETTING/SUBJECTS: All pediatric patients who received a palliative care consultation in our Midwestern free-standing children's hospital over a five-year period were included in the longitudinal study (n = 87). MEASUREMENTS: Repeated measures ANOVA was used to investigate how proxy-reported quality of life and family impact changed with time with attentiveness to also follow trends in minimal clinically important difference (MCID) metrics. RESULTS: The emotional domain showed a statistically significant positive trend over the first six months of palliative care involvement (p = 0.049), while the physical domain (p = 0.028) and daily activity (p = 0.039) showed a positive improvement for the full year. In using a standard of MCID, the physical, emotional, and cognitive domains improved in the quality-of-life scale and the communication, worry, and daily activity domains improved in the family impact scale over 12 months. CONCLUSIONS: In considering quality-of-life analyses for pediatric palliative care programmatic improvements, providers may consider analyzing not only for statistical significance in collective data sets but also for clinically important difference over time.


Assuntos
Atividades Cotidianas/psicologia , Adaptação Psicológica , Cuidados Paliativos/psicologia , Cuidados Paliativos/estatística & dados numéricos , Pais/psicologia , Pediatria/estatística & dados numéricos , Qualidade de Vida/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Estudos Longitudinais , Masculino , Meio-Oeste dos Estados Unidos , Estudos Prospectivos , Estresse Psicológico , Inquéritos e Questionários , Fatores de Tempo
6.
Children (Basel) ; 4(8)2017 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-28763047

RESUMO

Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child's quality of life across wellness domains. The 23-item PedsQL™ V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child. Findings were analyzed using Bland-Altman plots to compare observed differences to limits of agreement. This study revealed overall consistency between parent- and child-reported quality of life across domains. Physical health was noted to be in closest agreement. At the time of initial palliative care consult, children collectively scored their social quality of life higher than parental perception of the child's social quality of life; whereas, emotional and cognitive quality of life domains were scored lower by children than by the parental report. At the one year survey time point, the physical, emotional, and social domains trended toward more positive patient perception than proxy perception with congruence between quality of life scores for the cognitive domain. Findings reveal the importance of eliciting a child report in addition to a parent report when measuring and longitudinally trending perceptions on quality of life.

8.
Science ; 303(5654): 45-6, 2004 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-14704414
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