RESUMO
BACKGROUND: Derived from the National Pediatric Cardiology Quality Improvement Collaborative registry, the NEONATE risk score predicted freedom from interstage mortality or heart transplant for patients with single ventricle CHD and aortic arch hypoplasia discharged home following Stage 1 palliation. OBJECTIVES: We sought to validate the score in an external, modern cohort. METHODS: This was a retrospective cohort analysis of single ventricle CHD and aortic arch hypoplasia patients enrolled in the National Pediatric Cardiology Quality Improvement Collaborative Phase II registry from 2016 to 2020, who were discharged home after Stage 1 palliation. Points were allocated per the NEONATE score (Norwood type-Norwood/Blalock-Taussig shunt: 3, Hybrid: 12; extracorporeal membrane oxygenation post-op: 9, Opiates at discharge: 6, No Digoxin at discharge: 9, Arch Obstruction on discharge echo: 9, Tricuspid regurgitation ≥ moderate on discharge echo: 12; Extra oxygen plus ≥ moderate tricuspid regurgitation: 28). The composite primary endpoint was interstage mortality or heart transplant. RESULTS: In total, 1026 patients met inclusion criteria; 61 (6%) met the primary outcome. Interstage mortality occurred in 44 (4.3%) patients at a median of 129 (IQR 62,195) days, and 17 (1.7%) were referred for heart transplant at a 167 (114,199) days of life. The median NEONATE score was 0(0,9) in those who survived to Stage 2 palliation compared to 9(0,15) in those who experienced interstage mortality or heart transplant (p < 0.001). Applying a NEONATE score cut-off of 17 points that separated patients into low- and high-risk groups in the learning cohort provided 91% specificity, negative predictive value of 95%, and overall accuracy of 87% (85.4-89.5%). CONCLUSION: In a modern cohort of patients with single ventricle CHD and aortic arch hypoplasia, the NEONATE score remains useful at discharge post-Stage 1 palliation to predict freedom from interstage mortality or heart transplant.
RESUMO
BACKGROUND: Interstage mortality (IM) remains high for patients with single-ventricle congenital heart disease (SVCHD) in the period between Stage 1 Palliation (S1P) and Glenn operation. We sought to characterize IM. METHODS: This was a descriptive analysis of 2184 patients with SVCHD discharged home after S1P from 60 National Pediatric Cardiology Quality Improvement Collaborative sites between 2008 and 2015. Patients underwent S1P with right ventricle-pulmonary artery conduit (RVPAC), modified Blalock-Taussig-Thomas shunt (BTT), or Hybrid; transplants were excluded. RESULTS: IM occurred in 153 (7%) patients (median gestational age 38 weeks, 54% male, 77% white), at 88 (IQR 60,136) days of life, and 39 (IQR 17,84) days after hospital discharge; 13 (8.6%) occurred ≤ 30 days after S1P. The mortality rate for RVPAC was lower (5.2%; 59/1138) than BTT (9.1%; 65/712) and Hybrid (20.1%; 27/134). More than half of deaths occurred at home (20%) or in the emergency department (33%). The remainder occurred while inpatient at center of S1P (cardiac intensive care unit 36%, inpatient ward 5%) or at a different center (5%). Fussiness and breathing problems were most often cited as harbingers of death; distance to surgical center was the biggest barrier cited to seeking care. Cause of death was unknown in 44% of cases overall; in the subset of patients who underwent post-mortem autopsy, the cause of death remained unknown in 30% of patients, with the most common diagnosis being low cardiac output. CONCLUSIONS: Most IM occurred in the outpatient setting, with non-specific preceding symptoms and unknown cause of death. These data indicate the need for research to identify occult causes of death, including arrhythmia.
Assuntos
Cardiopatias Congênitas/cirurgia , Ventrículos do Coração/cirurgia , Procedimentos de Norwood/mortalidade , Cuidados Paliativos/métodos , Alta do Paciente/estatística & dados numéricos , Artéria Pulmonar/cirurgia , Procedimento de Blalock-Taussig/mortalidade , Feminino , Cardiopatias Congênitas/mortalidade , Humanos , Lactente , Mortalidade Infantil/tendências , Recém-Nascido , Masculino , Estudos Retrospectivos , Resultado do Tratamento , Estados Unidos/epidemiologiaRESUMO
The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.
Assuntos
Técnica de Fontan , Cardiopatias Congênitas , Adulto , Criança , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/cirurgia , Humanos , Longevidade , Qualidade de Vida , Sistema de Registros , Estados Unidos/epidemiologiaRESUMO
Optimising short- and long-term outcomes for children and patients with CHD depends on continued scientific discovery and translation to clinical improvements in a coordinated effort by multiple stakeholders. Several challenges remain for clinicians, researchers, administrators, patients, and families seeking continuous scientific and clinical advancements in the field. We describe a new integrated research and improvement network - Cardiac Networks United - that seeks to build upon the experience and success achieved to-date to create a new infrastructure for research and quality improvement that will serve the needs of the paediatric and congenital heart community in the future. Existing gaps in data integration and barriers to improvement are described, along with the mission and vision, organisational structure, and early objectives of Cardiac Networks United. Finally, representatives of key stakeholder groups - heart centre executives, research leaders, learning health system experts, and parent advocates - offer their perspectives on the need for this new collaborative effort.
Assuntos
Coleta de Dados/métodos , Cardiopatias Congênitas , Relações Interinstitucionais , Relações Interprofissionais , Cardiologia , Humanos , Serviços de Informação , Pais , Pediatria , Desenvolvimento de Programas , Melhoria de Qualidade , Sistema de RegistrosRESUMO
Objective To pilot test a statewide quality improvement (QI) collaborative learning network of home visiting agencies. Methods Project timeline was June 2014-May 2015. Overall objectives of this 8-month initiative were to assess the use of collaborative QI to engage local home visiting agencies and to test the use of statewide home visiting data for QI. Outcome measures were mean time from referral to first home visit, percentage of families with at least three home visits per month, mean duration of participation, and exit rate among infants <6 months. Of 110 agencies, eight sites were selected based on volume, geography, and agency leadership. Our adapted Breakthrough Series model included monthly calls with performance feedback and cross-agency learning. A statewide data system was used to generate monthly run charts. Results Mean time from referral to first home visit was 16.7 days, and 9.4% of families received ≥3 visits per month. Mean participation was 11.7 months, and the exit rate among infants <6 months old was 6.1%. Agencies tested several strategies, including parent commitment agreements, expedited contact after referral, and Facebook forums. No shift in outcome measures was observed, but agencies tracked intermediate process changes using internal site-specific data. Agencies reported positive experiences from participation including more frequent and structured staff meetings. Conclusions for Practice Within a pilot QI learning network, agencies tested and measured changes using statewide and internal data. Potential next steps are to develop and test new metrics with current pilot sites and a larger collaborative.
Assuntos
Serviços de Assistência Domiciliar/organização & administração , Visita Domiciliar/tendências , Aprendizagem , Melhoria de Qualidade/tendências , Fatores de Tempo , Serviços de Assistência Domiciliar/normas , Visita Domiciliar/estatística & dados numéricos , Humanos , Ohio , Patient Protection and Affordable Care Act/organização & administração , Patient Protection and Affordable Care Act/tendências , Projetos PilotoRESUMO
Background Birth registry data are universally collected, generating large administrative datasets. However, these data are typically not used for quality improvement (QI) initiatives in perinatal medicine because the quality and timeliness of the information is uncertain. Objective We sought to identify and address causes of inaccuracy in recording birth registry information so that birth registry data could support statewide obstetrical quality initiatives in Ohio. Study Design The Ohio Perinatal Quality Collaborative and the Ohio Department of Health Vital Statistics used QI techniques in 15 medium-sized maternity hospitals to identify and remove systemic sources of inaccuracy in birth registry data. The primary outcome was the rate of scheduled deliveries without medical indication between 370/7 and 386/7 weeks at participating hospitals from birth registry data. Results Inaccurate birth registry data most commonly resulted from limited communication between clinical and medical record staff. The rate of scheduled births between 370/7 and 386/7 weeks' gestation without a documented medical indication as recorded in the birth registry declined by 35%. Conclusion A QI initiative aimed at increasing the accuracy of birth registry information demonstrated the utility of these data for surveillance of perinatal outcomes and has led to ongoing efforts to support birth registrars in submitting accurate data.
Assuntos
Confiabilidade dos Dados , Parto Obstétrico/estatística & dados numéricos , Controle de Formulários e Registros/normas , Uso Excessivo dos Serviços de Saúde/estatística & dados numéricos , Melhoria de Qualidade , Sistema de Registros/normas , Agendamento de Consultas , Declaração de Nascimento , Feminino , Idade Gestacional , Humanos , Uso Excessivo dos Serviços de Saúde/prevenção & controle , Ohio , Gravidez , Nascimento a TermoRESUMO
PURPOSE OF REVIEW: The National Pediatric Quality Improvement Collaborative (NPCQIC) was established to improve outcomes and quality of life in children with hypoplastic left heart syndrome and other single ventricle lesions requiring a Norwood operation. The NPCQIC consists of a network of providers and families collecting longitudinal data, conducting research, and using quality improvement science to decrease variations in care, develop and spread best practices, and decrease mortality. RECENT FINDINGS: Initial descriptive investigation of the collaborative data found interstage care process variations, different surgical strategies, diverse feeding practices, and variable ICU approaches between centers and within sites. Analysis and evaluation of these practice variations have allowed centers to learn from each other and implement change to improve processes. There has been an improvement in performance measures and most importantly, a 39.7% reduction in mortality. SUMMARY: The NPCQIC has shown, in a rare disease such as hypoplastic left heart syndrome that a network based on multicenter collaboration, patient (parent) engagement, and quality improvement science can facilitate change in practices and improvement in outcomes.
Assuntos
Síndrome do Coração Esquerdo Hipoplásico/cirurgia , Procedimentos de Norwood , Pediatria , Comitês Consultivos , Criança , Pré-Escolar , Comportamento Cooperativo , Humanos , Síndrome do Coração Esquerdo Hipoplásico/mortalidade , Lactente , Procedimentos de Norwood/normas , Avaliação de Processos e Resultados em Cuidados de Saúde , Pediatria/normas , Guias de Prática Clínica como Assunto , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Indicadores de Qualidade em Assistência à Saúde , Qualidade de Vida , Resultado do TratamentoRESUMO
Among infants with single ventricle congenital heart disease (SVD) requiring Stage I palliation (S1P), the impact of prenatal diagnosis (PD) on outcomes has been variably characterized. We investigated the impact of PD in a large multi-center cohort of survivors of S1P in the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) registry. Retrospective analysis of demographic and outcomes data among infants enrolled in the NPCQIC database; eligibility includes SVD requiring S1P and survival to discharge. From 43 contributing surgical centers, 591 infants had data available through time of BDG (519) or interstage death (55). Median gestational age was 39 weeks (31-46), and 66% had variants of hypoplastic left heart syndrome. PD was made in 445 (75%), with significant variation by center (p = 0.004). While infants with PD had slightly lower gestational age at birth (p < 0.001), there were no differences in birth weight, the presence of major syndromes or other organ system anomalies. Those without PD were more likely to have atrioventricular valve regurgitation (p = .002), ventricular dysfunction (p = 0.06), and pre-operative risk factors including acidosis (p < 0.001), renal insufficiency (p = 0.007), and shock (p = 0.05). Post-operative ventilation was shorter in the PD group (9 vs. 12 d, p = 0.002). Other early post-operative outcomes, interstage course, and outcomes at BDG were similar between groups. In a large cohort of infants with SVD surviving to hospital discharge after S1P, PD showed significant inter-site variation and was associated with improved pre-operative status and shorter duration of mechanical ventilation. The significance of such associations merits further study.
Assuntos
Doenças Fetais/diagnóstico , Feminino , Idade Gestacional , Cardiopatias Congênitas/cirurgia , Ventrículos do Coração/anormalidades , Humanos , Síndrome do Coração Esquerdo Hipoplásico/diagnóstico , Síndrome do Coração Esquerdo Hipoplásico/cirurgia , Masculino , Cuidados Paliativos , Melhoria de Qualidade , SobreviventesRESUMO
The objective of this study is to identify predictors of prolonged intensive care unit (ICU) length of stay (LOS) for single ventricle patients following Stage I palliation. We hypothesize that peri-operative factors contribute to prolonged ICU stay among children with hypoplastic left heart syndrome (HLHS) and its variants. In 2008, as a part of the Joint Council on Congenital Heart Disease initiative, the National Pediatric Cardiology-Quality Improvement Collaborative established a data registry for patients with HLHS and its variants undergoing staged palliation. Between July 2008 and August 2011, 33 sites across the United States submitted discharge data essential to this analysis. Data describing the patients, their procedures, and their hospital experience were entered. LOS estimates were generated. Prolonged LOS in the ICU was defined as stay greater than or equal to 26 days (i.e., 75th percentile). Statistical analyses were carried out to identify pre-operative, operative, and post-operative predictors of prolonged LOS in the ICU. The number of patients with complete discharge data was 303, and these subjects were included in the analysis. Univariate and multivariate analyses were performed. Multivariate analysis revealed that lower number of enrolled participants (e.g., 1-10) per site, the presence of pre-operative acidosis, increased circulatory arrest time, the occurrence of a central line infection, and the development of respiratory insufficiency requiring re-intubation were associated with prolonged LOS in the ICU. Prolonged LOS in the ICU following Stage I palliation in patients with HLHS and HLHS variant anatomy is associated with site enrollment, circulatory arrest time, pre-operative acidosis, and some post-operative complications, including central line infection and re-intubation. Further study of these associations may reveal strategies for reducing LOS in the ICU following the Norwood and Norwood-variant surgeries.
Assuntos
Cardiopatias Congênitas/cirurgia , Tempo de Internação/estatística & dados numéricos , Melhoria de Qualidade , Feminino , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Pediátrica , Masculino , Procedimentos de Norwood , Cuidados Paliativos , Complicações Pós-Operatórias , Valor Preditivo dos Testes , Sistema de RegistrosRESUMO
Background: For infants with single ventricle heart disease, the time after stage 2 procedure (S2P) is believed to be a lower risk period compared with the interstage period; however, significant morbidity and mortality still occur. Objectives: This study aimed to identify risk factors for mortality or transplantation referral between S2P surgery and the first birthday. Methods: Retrospective cohort analysis of infants in the National Pediatric Cardiology Quality Improvement Collaborative who underwent staged single ventricle palliation from 2016 to 2022 and survived to S2P. Multivariable logistic regression and classification and regression trees were performed to identify risk factors for mortality and transplantation referral after S2P. Results: Of the 1,455 patients in the cohort who survived to S2P, 5.2% died and 2.3% were referred for transplant. Overall event rates at 30 and 100 days after S2P were 2% and 5%, respectively. Independent risk factors for mortality and transplantation referral included the presence of a known genetic syndrome, shunt type at stage 1 procedure (S1P), tricuspid valve repair at S1P, longer time to extubation and reintubation after S1P, ≥ moderate tricuspid regurgitation prior to S2P, younger age at S2P, and the risk groups identified in the classification and regression tree analysis (extracorporeal membrane oxygenation after S1P and longer S2P cardiopulmonary bypass time without extracorporeal membrane oxygenation). Conclusions: Mortality and transplantation referral rates after S2P to 1 year of age remain high â¼7%. Many of the identified risk factors after S2P are similar to those established for interstage factors around the S1P, whereas others may be unique to the period after S2P.
RESUMO
BACKGROUND: Children with chronic medical conditions and their families have significant emotional health concerns, yet paediatricians are often ill-equipped to address these needs. The American Board of Pediatrics launched the Roadmap Project to better support emotional health as part of routine care. We present pilot work in paediatric training programmes to test educational approaches and explore lessons learned. APPROACH: Four institutions implemented Roadmap tools into their paediatric training programmes, either incorporating them into existing educational structures or embedding them into the clinical workplace. One programme utilised an existing longitudinal curriculum, and another incorporated into a block rotation. Two programmes embedded training for residents into a larger programme for the healthcare team within the clinical space, one in outpatient clinics and one in an inpatient service. EVALUATION: Evaluation strategies at each site matched the intended outcomes. Sites working within education programmes evaluated learners, demonstrating increases in resident skills and confidence on pre-/post-self-assessments. Sites embedding tools into the practice context measured changes in the clinical practice of the healthcare team. Despite variability in implementation, all approaches improved trainee skills; sites embedding education into a clinical setting saw greater changes in clinical practice. IMPLICATIONS: Our pilot provided structure yet allowed for flexibility, and all sites improved trainee skills. Engaging the entire healthcare team within practice settings appears advantageous, thus embedding education into clinical practice may be preferable to a separate education programme. Similar to outcomes found in interprofessional education (IPE), educating clinical teams together may be more impactful for cultural shifts needed for changing clinical practice.
Assuntos
Competência Clínica , Currículo , Pediatria , Humanos , Pediatria/educação , Projetos Piloto , Internato e Residência/organização & administração , Equipe de Assistência ao Paciente/organização & administraçãoRESUMO
Background: Patient-reported outcomes (PROs) can assess chronic health. The study aims were to pilot a survey through the PEDSnet Healthy Weight Network (HWN), collecting PROs in tertiary care pediatric weight management programs (PWMP) in the United States, and demonstrate that a 50% enrollment rate was feasible; describe PROs in this population; and explore the relationship between child/family characteristics and PROs. Methods: Participants included 12- to 18-year-old patients and parents of 5- to 18-year-olds receiving care at PWMP in eight HWN sites. Patient-Reported Outcomes Measurement Information System (PROMIS®) measures assessed global health (GH), fatigue, stress, and family relationships (FR). T-score cut points defined poor GH or FR or severe fatigue or stress. Generalized estimating equations explored relationships between patient/family characteristics and PROMIS measures. Results: Overall, 63% of eligible parents and 52% of eligible children enrolled. Seven sites achieved the goal enrollment for parents and four for children. Participants included 1447 children. By self-report, 44.6% reported poor GH, 8.6% poor FR, 9.3% severe fatigue, and 7.6% severe stress. Multiple-parent household was associated with lower odds of poor GH by parent proxy report [adjusted odds ratio (aOR) 0.69, 95% confidence interval (CI) 0.55-0.88] and poor FR by self-report (aOR 0.36, 95% CI 0.17-0.74). Parents were significantly more likely to report that the child had poor GH and poor FR when a child had multiple households. Conclusions: PROs were feasibly assessed across the HWN, although implementation varied by site. Nearly half of the children seeking care in PWMP reported poor GH, and family context may play a role. Future work may build on this pilot to show how PROs can inform clinical care in PWMP.
Assuntos
Saúde Global , Obesidade Infantil , Criança , Humanos , Estados Unidos/epidemiologia , Adolescente , Obesidade Infantil/epidemiologia , Obesidade Infantil/terapia , Relações Familiares , Pais , Medidas de Resultados Relatados pelo Paciente , Qualidade de VidaRESUMO
BACKGROUND: Hypertensive disorders of pregnancy are a leading cause of severe maternal morbidity and mortality, and studies have shown that more than 60% of cases are preventable. As part of a statewide quality Maternal Safety Quality Improvement Project, we adapted the Alliance for Innovation on Maternal Health Severe Hypertension in Pregnancy bundle in a consortium of maternity hospitals in Ohio to improve care processes and outcomes for patients with a severe hypertensive event during pregnancy or the postpartum period. OBJECTIVE: This study aimed to report the first year of data from this Maternal Safety Quality Improvement Project, including an assessment of the process measures by hospital level of maternal care designation, and provide perspective on the unique challenges of implementing a large-scale Maternal Safety Quality Improvement Project during a global pandemic. STUDY DESIGN: This Maternal Safety Quality Improvement Project engaged Ohio level 1 to 4 maternity hospitals and provided multimodal quality improvement support. Participating hospitals submitted monthly patient-level data, which included all cases of new-onset sustained severe hypertension. The primary process measure was the proportion of birthing people in Ohio with sustained severe hypertension who received treatment with appropriate acute antihypertensive therapy within 60 minutes. The secondary process measures included receipt of a follow-up appointment after hospital discharge within 72 hours (if discharged on medication) or 10 days (if discharged without medication), a blood pressure cuff on hospital discharge, and education about urgent maternal warning signs. Data for primary and secondary process measures were plotted on a biweekly basis, and statistical process control methods were used to identify special cause variation over time. Data were stratified by various demographic variables, including race or ethnicity, insurance status, and maternal level of care. To assess the effect of the COVID-19 pandemic on this Maternal Safety Quality Improvement Project, process measure data were compared with COVID-19 case volume in Ohio across the study epoch. RESULTS: A total of 29 hospitals participated in the project from July 2020 to September 2021. Data were collected on 4948 hypertensive events representing 4678 unique patients. In aggregate, the primary process measure (timely and appropriate treatment) demonstrated a 19.3% increase (from a baseline of 56.5% to 67.4%; P<.001). The secondary process measures demonstrated significant increases ranging from 26.1% to 166.8% (all P<.001). Both non-Hispanic Black and White pregnant or postpartum people demonstrated shifts and sustained improvements in the treatment of severe hypertension, which did not differ by race across the study period. Process measure improvements were achieved and sustained across peaks in the COVID-19 pandemic. CONCLUSION: This Ohio Maternal Safety Quality Improvement Project demonstrated meaningful changes in project process measures in the identification and treatment of severe hypertension in pregnancy and the postpartum period. Process measures improvements were achieved across all hospital levels of maternal care, and differences were not observed by race or ethnicity. Our findings suggest that a robust and comprehensive quality improvement initiative with appropriate support and resources can achieve meaningful gains in the setting of a global pandemic.
Assuntos
COVID-19 , Hipertensão , Humanos , Gravidez , Feminino , COVID-19/epidemiologia , COVID-19/prevenção & controle , Pandemias , Ohio/epidemiologia , Melhoria de QualidadeRESUMO
OBJECTIVE: The study goal was to evaluate interstage growth variation among sites participating in the National Pediatric Cardiology Quality Improvement Collaborative registry caring for infants with hypoplastic left heart syndrome and to identify nutritional practices common among sites achieving best growth outcomes. STUDY DESIGN: This was a retrospective analysis of infants in the registry who had presented due to their superior cavopulmonary connection (SCPC) and whose surgical site had enrolled ≥ 4 eligible patients in the registry. The primary outcome variable was weight-for-age z-score (WAZ) change between Norwood discharge and presentation for SCPC (interstage period). Blinded, structured interviews were performed with each site regarding site-specific nutritional practices. Practices common among sites with positive interstage WAZ changes were identified. RESULTS: Sixteen centers enrolled 132 infants from December 2008 through December 2010. Median age at SCPC was 5 months (2.6-12.6), and median interstage WAZ change was -0.29 (-3.2 to 2.3). Significant variation in WAZ changes among sites was demonstrated (P < .001). Sites that used standard feeding evaluation prior to Norwood discharge and that closely monitored for specific weight gain/loss red flags in the interstage period demonstrated significantly better patient growth than those that did not use these practices (P = .002). CONCLUSIONS: Considerable variation exists in interstage growth among patients receiving care at these 16 surgical sites. Standardization of interstage nutritional management with focus on best nutritional practices may lead to improved growth in this high-risk population of infants.
Assuntos
Comportamento Alimentar , Crescimento , Síndrome do Coração Esquerdo Hipoplásico/fisiopatologia , Ventrículos do Coração/anormalidades , Humanos , Síndrome do Coração Esquerdo Hipoplásico/cirurgia , Lactente , Recém-Nascido , Masculino , Estudos RetrospectivosRESUMO
BACKGROUND: Digoxin has been associated with reduced interstage mortality for patients with functional single ventricles with aortic hypoplasia or ductal-dependent systemic circulation. The NEONATE (type of stage 1 palliation operation, postoperative extracorporeal membrane oxygenation, discharge with opiates, no digoxin at discharge, postoperative arch obstruction, moderate to severe tricuspid regurgitation without an oxygen requirement, and extra oxygen required at discharge in patients with moderate to severe tricuspid regurgitation) score can stratify patients by risk of death or transplantation (DTx) on the basis of clinical factors. The study investigators suspected a variable transplant-free survival benefit of digoxin in high-risk vs low-risk patients. METHODS: National Pediatric Cardiology Quality Improvement Collaborative patients discharged after stage 1 palliation with complete data were categorized as high- or low-risk on the basis of a modified NEONATE score. The primary outcome of DTx was evaluated. A mixed-effect regression evaluated associations between digoxin prescription and risk factors. RESULTS: A total of 1199 patients were included; 399 (33%) were high risk. Baseline demographics were similar between the cohorts. Blalock-Taussig shunt or a hybrid operation, postoperative extracorporeal membrane oxygenation, opiate prescription, and significant tricuspid regurgitation or arch obstruction were more common in high-risk patients. The odds of DTx were 65% lower in high-risk patients prescribed digoxin compared with patients who were not (P = .001). Digoxin prescription was associated with 60.8% lower DTx in the high-risk cohort (7.8% vs 19.9%; P = .001). There was no significant difference in the DTx rate according to digoxin prescription in the low-risk cohort (4.7% vs 5.7%; P = .46). Blalock-Taussig shunt, aortic arch obstruction, and significant tricuspid regurgitation were most strongly associated with deriving a benefit from digoxin. CONCLUSIONS: Digoxin use is associated with significant improvement in transplant-free survival in high-risk but not in low-risk interstage patients. A tailored approach to the use of digoxin in interstage patients may be warranted.
Assuntos
Síndrome do Coração Esquerdo Hipoplásico , Procedimentos de Norwood , Alcaloides Opiáceos , Insuficiência da Valva Tricúspide , Criança , Digoxina/uso terapêutico , Ventrículos do Coração/cirurgia , Humanos , Síndrome do Coração Esquerdo Hipoplásico/cirurgia , Lactente , Recém-Nascido , Procedimentos de Norwood/efeitos adversos , Oxigênio , Cuidados Paliativos , Estudos Retrospectivos , Fatores de Risco , Fatores de Tempo , Resultado do Tratamento , Insuficiência da Valva Tricúspide/etiologiaRESUMO
BACKGROUND: The vision of learning healthcare systems (LHSs) is attractive as a more effective model for health care services, but achieving the vision is complex. There is limited literature describing the processes needed to construct such multicomponent systems or to assess development. METHODS: We used the concept of a capability maturity matrix to describe the maturation of necessary infrastructure and processes to create learning networks (LNs), multisite collaborative LHSs that use an actor-oriented network organizational architecture. We developed a network maturity grid (NMG) assessment tool by incorporating information from literature review, content theory from existing networks, and expert opinion to establish domains and components. We refined the maturity grid in response to feedback from network leadership teams. We followed NMG scores over time for nine LNs and plotted scores for each domain component with respect to SD for one participating network. We sought subjective feedback on the experience of applying the NMG to individual networks. RESULTS: LN leaders evaluated the scope, depth, and applicability of the NMG to their networks. Qualitative feedback from network leaders indicated that changes in NMG scores over time aligned with leaders' reports about growth in specific domains; changes in scores were consistent with network efforts to improve in various areas. Scores over time showed differences in maturation in the individual domains of each network. Scoring patterns, and SD for domain component scores, indicated consistency among LN leaders in some but not all aspects of network maturity. A case example from a participating network highlighted the value of the NMG in prompting strategic discussions about network development and demonstrated that the process of using the tool was itself valuable. CONCLUSIONS: The capability maturity grid proposed here provides a framework to help those interested in creating Learning Health Networks plan and develop them over time.
RESUMO
INTRODUCTION: Individuals with opioid use disorder often report feelings of shame and describe feeling judged negatively. These feelings are especially true for pregnant women with opioid use disorder. The Ohio Perinatal Quality Collaborative conducted a multimodal quality improvement initiative for infants born with Neonatal Abstinence Syndrome (NAS). An important component of the project was focused on improving staff attitudes toward mothers of infants with NAS. METHODS: The Ohio Perinatal Quality Collaborative implemented an education program for healthcare providers at 39 participating hospital units regarding opioid use as a chronic disease and principles of nonjudgmental, trauma-informed care. Healthcare providers partnered with the mother of infants with NAS in the care of the infant and connected with local community resources. This work was a subcomponent of an overall multimodal quality improvement project. Healthcare provider attitudes were measured with the "Attitude Measurement: Brief Scales" questionnaire anonymously, at 3 different time points throughout the project. Attitude change was measured by pretraining and posttraining scores. ANOVA methods were used to compare individual items and a summary score across the 3 surveys. RESULTS: Summary scores improved significantly from 18.99 at baseline (January-March 2014) to 19.94 (P < 0.0001) in February 2015 and were maintained at 20.05 in July 2016. CONCLUSIONS: A nonjudgmental attitude toward mothers of infants with NAS is an important component of compassionate care. Improving healthcare provider attitudes can benefit a mother of an infant with NAS and help preserve the mother-infant dyad.
RESUMO
OBJECTIVE: We sought to reduce scheduled births between 36(0/7)-38(6/7) weeks that lack appropriate medical indication. STUDY DESIGN: Twenty Ohio maternity hospitals collected baseline data for 60 days and then selected locally appropriate Institute for Healthcare Improvement Breakthrough Series interventions to reduce the incidence of scheduled births. Deidentified birth data were analyzed centrally. Rates of scheduled births without a documented indication, birth certificate data, and implementation issues were shared regularly among sites. RESULTS: The rate of scheduled births between 36(0/7)-38(6/7) weeks without a documented medical indication declined from 25% to <5% (P < .05) in participating hospitals. Birth certificate data showed inductions without an indication declined from a mean of 13% to 8% (P < .0027). Dating criteria were documented in 99% of charts. CONCLUSION: A statewide quality collaborative was associated with fewer scheduled births lacking a documented medical indication.
Assuntos
Cesárea/estatística & dados numéricos , Idade Gestacional , Trabalho de Parto Induzido/estatística & dados numéricos , Garantia da Qualidade dos Cuidados de Saúde , Declaração de Nascimento , Cesárea/tendências , Documentação , Feminino , Maternidades , Humanos , Unidades de Terapia Intensiva Neonatal , Trabalho de Parto Induzido/tendências , Ohio , Admissão do Paciente/estatística & dados numéricos , Gravidez , Avaliação de Programas e Projetos de SaúdeRESUMO
The quality of care for children and adults in the United States is variable and often suboptimal. Approaches that improve the systems of care for entire patient populations are needed. The certifying medical boards can contribute to driving change by ensuring that improving care and outcomes for patients and families is the priority. The American Board of Pediatrics has catalyzed collaborative improvement networks, resulting in improved health outcomes for children, fostered partnerships with patients and families, and brought together key stakeholders to advocate for network improvement efforts for sickle cell disease as one action to address health disparities. Similar concerted efforts by certifying boards in collaboration with physicians and patients can improve the quality of care and lead to better patient outcomes.