Integrating education for clinical practice change.

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.

Patient-Reported Outcomes to Describe Global Health and Family Relationships in Pediatric Weight Management.

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.

The NEONATE score predicts freedom from interstage mortality or transplant in a modern cohort.

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.

The Ohio Maternal Safety Quality Improvement Project: initial results of a statewide perinatal hypertension quality improvement initiative implemented during the COVID-19 pandemic.

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.

Digoxin Associated With Greater Transplant-Free Survival in High- vs Low-Risk Interstage Patients.

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.

Quality Improvement Initiative to Improve Healthcare Providers' Attitudes towards Mothers with Opioid Use Disorder.

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.

Characteristics of Interstage Death After Discharge from Stage I Palliation.

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.

A maturity grid assessment tool for learning networks.

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.

Orchestrated Testing of Formula Type to Reduce Length of Stay in Neonatal Abstinence Syndrome.

BACKGROUND: Despite the standardization of care, formula feeding varied across sites of the Ohio Perinatal Quality Collaborative (OPQC). We used orchestrated testing (OT) to learn from this variation and improve nonpharmacologic care of infants with neonatal abstinence syndrome (NAS) requiring pharmacologic treatment in Ohio. METHODS: To test the impact of formula on length of stay (LOS), treatment failure, and weight loss among infants hospitalized with NAS, we compared caloric content (high versus standard) and lactose content (low versus standard) using a 22 factorial design. During October 2015 to June 2016, OPQC sites joined 1 of 4 OT groups. We used response plots to examine the effect of each factor and control charts to track formula use and LOS. We used the OT results to revise the nonpharmacologic bundle and implemented it during 2017. RESULTS: Forty-seven sites caring for 546 NAS infants self-selected into the 4 OT groups. Response plots revealed the benefit of high-calorie formula (HCF) on weight loss, treatment failure, and LOS. The nonpharmacologic treatment bundle was updated to recommend HCF when breastfeeding was not possible. During implementation, HCF use increased, and LOS decreased from 17.1 to 16.4 days across the OPQC. CONCLUSIONS: OT revealed that HCF was associated with shorter LOS in OPQC sites. Implementation of a revised nonpharmacologic care bundle was followed by additional LOS improvement in Ohio. Despite some challenges in the implementation of OT, our findings support its usefulness for learning in improvement networks.

The Role of Certifying Boards in Improving Health: The Example of the American Board of Pediatrics.

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.

The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study.

BACKGROUND AND OBJECTIVES: Families of children with medical complexity are experts on their child's baseline behavior and temperament and may recognize changes in their hospitalized child's health before clinicians. Our objective was to develop a comprehensive understanding of how families identify and communicate their child's deteriorating health with the hospital-based health care team. METHODS: In this qualitative study, our multidisciplinary team recruited family members of hospitalized children with neurologic impairment. Interviews, conducted in the hospital, were audio recorded, deidentified, and transcribed. By using inductive thematic analysis, each transcript was independently coded by 3 or 4 team members. Members met regularly to reach consensus on coding decisions. Patterns observed were organized into themes and subthemes. RESULTS: Participants included 28 family members of 26 hospitalized children 9 months to 17 years of age. Children had a mean of 9 hospitalizations in the previous 3 years. Analysis resulted in 6 themes. First, families often reported their child "writes his own book," meaning the child's illness narrative rarely conformed to textbooks. Second, families developed informal, learned pathways to navigate the inpatient system. Third, families stressed the importance of advocacy. Fourth, families self-identified as "not your typical parents" and discussed how they learned their roles as part of the care team. Fifth, medical culture often did not support partnership. Finally, families noted they are often "running on empty" from stress, fear, and lack of sleep. CONCLUSIONS: Families of children with medical complexity employ mature, experience-based pathways to identify deteriorating health. Existing communication structures in the hospital are poorly equipped to incorporate families' expertise.

The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States.

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.

Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network.

OBJECTIVES: To summarize baseline data and lessons learned from the Autism Learning Health Network, designed to improve care and outcomes for children with autism spectrum disorder (ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life (QoL), receipt of recommended health services, and next steps. METHODS: A cross-sectional study of children 3 to 12 years old with ASD receiving care at 13 sites. Parent-reported characteristics of children with ASD were collected as outcome measures aligned with our network's aims of reducing rates of challenging behaviors, improving QoL, and ensuring receipt of recommended health services. Parents completed a survey about behavioral challenges, co-occurring conditions, health services, and the Patient-Reported Outcomes Measurement Information System Global Health Measure and the Aberrant Behavior Checklist to assess QoL and behavior symptoms, respectively. RESULTS: Analysis included 530 children. Challenging behaviors were reported by the majority of parents (93%), frequently noting attention-deficit/hyperactivity disorder symptoms, irritability, and anxiety. Mean (SD) scores on the Aberrant Behavior Checklist hyperactivity and irritability subscales were 17.9 (10.5) and 13.5 (9.2), respectively. The Patient-Reported Outcomes Measurement Information System Global Health Measure total score of 23.6 (3.7) was lower than scores reported in a general pediatric population. Most children had received recommended well-child (94%) and dental (85%) care in the past 12 months. CONCLUSIONS: This baseline data (1) affirmed the focus on addressing challenging behaviors; (2) prioritized 3 behavior domains, that of attention-deficit/hyperactivity disorder, irritability, and anxiety; and (3) identified targets for reducing severity of behaviors and strategies to improve data collection.

Development of a validated risk score for interstage death or transplant after stage I palliation for single-ventricle heart disease.

OBJECTIVE: To develop a risk score to predict mortality or transplant in the interstage period. BACKGROUND: The "interstage" period between the stage 1 and stage 2 palliation is a time of high morbidity and mortality for infants with single-ventricle congenital heart disease. METHODS: This was an analysis of patients with single-ventricle congenital heart disease requiring arch reconstruction who were enrolled in the National Pediatric Cardiology Quality Improvement Collaborative registry from 2008 to 2015. The primary composite endpoint was interstage mortality or transplant. Multivariable logistic regression and classification and regression tree analysis were performed on two-thirds of the patients ("learning cohort") to build a risk score for the composite endpoint, that was validated in the remaining patients ("validation cohort"). RESULTS: In the 2128 patients analyzed in the registry, the overall event rate was 9% (153 [7%] deaths, 42 [2%] transplants). In the learning cohort, factors independently associated with the composite endpoint were (1) type of Norwood; (2) postoperative ECMO; (3) discharge with Opiates; (4) No Digoxin at discharge; (5) postoperative Arch obstruction, (6) moderate-to-severe Tricuspid regurgitation without an oxygen requirement, and (7) Extra Oxygen required at discharge in patients with moderate-to-severe tricuspid regurgitation. This model was used to create a weighted risk score ("NEONATE" score; 0-76 points), with >75% accuracy in the learning and validation cohorts. In the validation cohort, the event rate in patients with a score >17 was nearly three times those with a score ≤17. CONCLUSIONS: We introduce a risk score that can be used post-stage 1 palliation to predict freedom from interstage mortality or transplant.

Transforming an Autism Pediatric Research Network into a Learning Health System: Lessons Learned.

INTRODUCTION: The Autism Speaks Autism Treatment Network that serves as the Autism Intervention and Research Network on Physical Health (ATN/AIR-P) has a mission to improve the health and well-being of children with Autism Spectrum Disorder and determine the best practices that lead to improved outcomes and expedite the translation of findings to practice. To better achieve this mission, the ATN/AIR-P is engaging in a design process to transition to a Learning Network (LN), the Autism Learning Health Network. The purpose of this paper is to: (1) make the medical and patient communities aware of an Autism LN that is based on the Institute of Medicine's definition of a Learning Health System; (2) describe how and why the ATN/AIR-P transformed to an LN; and (3) share lessons learned that might inform the transition of future existing networks surrounding other conditions. METHODS: Design methods included: an in-person design session with various stakeholders, the development of a Key Driver Diagram and redesign of organizational processes, network governance, and data collection and analytics. RESULTS: We realized many benefits in making the transition to an LN along with many lessons that can inform the design and implementation of the LN model when transforming existing networks to learning health systems. CONCLUSIONS: Transitioning a well-established research network requires a complex redesign of existing processes, data infrastructure, and cultural shifts compared with developing a new LN. We identified factors that may inform the transition of future established networks to expedite the process.

Power of a Learning Network in Congenital Heart Disease.

BACKGROUND: The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) formed to improve outcomes in infants with hypoplastic left heart syndrome. The collaborative sought to (1) decrease mortality, (2) reduce growth failure, and (3) reduce hospital readmissions due to major medical problems during the interstage period between discharge following stage 1 palliation (S1P) and admission for stage 2 palliation (S2P). METHODS: The NPC-QIC is a learning network, coproduced by parents and clinicians, of 65 pediatric cardiology centers that contribute clinical data on care processes and outcomes to a shared registry. The adapted Breakthrough Series Model structure brings teams together regularly to review data, share lessons, and plan improvements. Outcomes are monitored using statistical process control methods. RESULTS: Between 2008 and 2016, interstage mortality decreased by >40%, from 9.5% to 5.3%. Identification and use of a nutrition bundle led to improved infant growth, with a 28% reduction in interstage growth failure. The rate of serious hospital readmissions was low and did not significantly change. Importantly, a formed partnership with the parent group Sisters by Heart fostered the coproduction of tools and strategies and an emphasis on data transparency and outcomes. CONCLUSIONS: The NPC-QIC's initial efforts led to improvements in interstage growth and mortality. The NPC-QIC has modeled the use of data for improvement and research, the value of coproduction with parents, and the concept "all teach, all learn," demonstrating the power of the learning network model.