The association of care transitions measure-15 score and outcomes after discharge from the NICU.

BACKGROUND: Our objectives were (1) to describe Care Transitions Measure (CTM) scores among caregivers of preterm infants after discharge from the neonatal intensive care unit (NICU) and (2) to describe the association of CTM scores with readmissions, enrollment in public assistance programs, and caregiver quality of life scores. METHODS: The study design was a cross-sectional study. We estimated adjusted associations between CTM scores (validated measure of transition) with outcomes using unconditional logistic and linear regression models and completed an E-value analysis on readmissions to quantify the minimum amount of unmeasured confounding. RESULTS: One hundred sixty-nine parents answered the questionnaire (85% response rate). The majority of our sample was Hispanic (72.5%), non-English speaking (67.1%) and reported an annual income of <$20,000 (58%). Nearly 28% of the infants discharged from the NICU were readmitted within a year from discharge. After adjusting for confounders, we identified that a positive 10-point change of CTM score was associated with an odds ratio (95% CI) of 0.74 (0.58, 0.98) for readmission (p = 0.01), 1.02 (1, 1.05) for enrollment in early intervention, 1.03 (1, 1.05) for enrollment in food assistance programs, and a unit change (95% CI) 0.41 (0.27, 0.56) in the Multicultural Quality of Life Index score (p < 0.0001). The associated E-value for readmissions was 1.6 (CI 1.1) suggesting moderate confounding. CONCLUSION: The CTM may be a useful screening tool to predict certain outcomes for infants and their families after NICU discharge. However, further work must be done to identify unobserved confounding factors such as parenting confidence, problem-solving and patient activation.

Lifetime Burden of Adult Congenital Heart Disease in the USA Using a Microsimulation Model.

Congenital heart defects (CHD) represent a growing burden of illness among adults. We estimated the lifetime health, education, labor, and social outcomes of adults with CHD in the USA using the Future Adult Model, a dynamic microsimulation model that has been used to study the lifetime impacts of a variety of chronic diseases. We simulated a cohort of adult heads of households > 25 years old derived from the Panel Survey of Income Dynamics who reported a childhood heart problem as a proxy for CHD and calculated life expectancy, disability-free and quality-adjusted life years, lifetime earnings, education attainment, employment, development of chronic disease, medical spending, and disability insurance claiming status. Total burden of disease was estimated by comparing to a healthy cohort with no childhood heart problem. Eighty-seven individuals reporting a childhood heart problem were identified from the PSID and were used to generate the synthetic cohort simulated in the model. Life expectancy, disability-free, quality-adjusted, and discounted quality-adjusted life years were an average 4.6, 6.7, 5.3, and 1.4 years lower than in healthy adults. Lung disease, cancer, and severe mental distress were more common compared to healthy individuals. The CHD cohort earned $237,800 less in lifetime earnings and incurred higher average total medical spend by $66,600 compared to healthy individuals. Compared to healthy adults, the total burden of CHD is over $500K per adult. Despite being among the healthiest adults with CHD, there are significant decrements in life expectancy, employment, and lifetime earnings, with concomitant increases in medical spend.

Impact of Confounding on Cost, Survival, and Length-of-Stay Outcomes for Neonates with Hypoplastic Left Heart Syndrome Undergoing Stage 1 Palliation Surgery.

The objective of this analysis was to update trends in LOS and costs by survivorship and ECMO use among neonates with hypoplastic left heart syndrome (HLHS) undergoing stage 1 palliation surgery using 2016 data from the Healthcare Cost and Utilization Project Kids' Inpatient Database. We identified neonates ≤ 28 days old with HLHS undergoing Stage 1 surgery, defined as a Norwood procedure with modified Blalock-Taussig (BT) shunt, Sano modification, or both. Multivariable regression with year random effects was used to compare LOS and costs by hospital region, case volume, survivorship, and ECMO vs. no ECMO. An E-value analysis, an approach for conducting sensitivity analysis for unmeasured confounding, was performed to determine if unmeasured confounding contributed to the observed effects. Significant differences in total costs, LOS, and mortality were noted by hospital region, ECMO use, and sub-analyses of case volume. However, other than ECMO use and mortality, the maximum E-value confidence interval bound was 1.71, suggesting that these differences would disappear with an unmeasured confounder 1.71 times more associated with both the outcome and exposure (e.g., socioeconomic factors, environment, etc.) Our findings confirm previous literature demonstrating significant resource utilization among Norwood patients, particularly those undergoing ECMO use. Based on our E-value analysis, differences by hospital region and case volume can be explained by moderate unobserved confounding, rather than a reflection of the quality of care provided. Future analyses on surgical quality must account for unobserved factors to provide meaningful information for quality improvement.

Routine Surveillance Catheterization is Useful in Guiding Management of Stable Fontan Patients.

We developed a Fontan surveillance catheterization protocol as part of routine assessment of stable patients 10 years after Fontan completion. The surveillance catherization includes hemodynamic assessment with inhaled nitric oxide, angiography, liver biopsy, and transcatheter intervention if indicated. We aimed to describe hemodynamic and liver biopsy findings, response to pulmonary vasoreactivity testing, rates of transcatheter intervention, and changes in medical therapy following surveillance catheterization in stable Fontan patients. A single-center retrospective review of Fontan patients undergoing surveillance catheterization between November 2014 and May 2019 was performed. Liver biopsies were independently scored by two pathologists. Sixty-three patients underwent surveillance catheterization (mean age 14.6 ± 3.0 years). The mean Fontan pressure was 11.8 ± 2.1 mmHg. The mean cardiac index was 2.9 ± 0.6 L/min/m2. In the 51 patients who underwent pulmonary vasoreactivity testing, there was a significant decrease in median pulmonary vascular resistance (1.8 [range 0.8-4.1] vs 1.4 [range 0.7-3.0] Wood units × m2; p < 0.001). The mean cardiac index increased (3.0 ± 0.6 vs 3.2 ± 0.7 L/min/m2, p = 0.009). The Fontan pressure did not change significantly. Fifty-seven patients underwent liver biopsy, and all but one showed fibrosis. Nineteen patients (33.3%) demonstrated bridging fibrosis or cirrhosis. Twenty-five patients underwent 34 transcatheter interventions. Pulmonary artery or Fontan stent placement was performed in 19 patients. Phosphodiesterase type 5 inhibitors were initiated in nine patients following surveillance catheterization. Routine surveillance catheterization with liver biopsy in adolescent Fontan patients reveals information that can guide interventional and medical management. Further long-term follow-up and assessment are indicated to assess the benefit of these interventions.

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study.

BACKGROUND: We have limited information on families' experiences during transition and after discharge from the neonatal intensive care unit. METHODS: Open-ended semi-structured interviews were conducted with English or Spanish- speaking families enrolled in Medicaid in an urban high-risk infant follow up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. RESULTS: Twenty-one participants completed the study. The infant's median (IQR) birth weight was 1750 (1305, 2641) grams; 71% were Hispanic and 10% were Black non-Hispanic; 62% reported living in a neighborhood with 3-4th quartile economic hardship. All were classified as having chronic disease per the Pediatric Medical Complexity Algorithm and 67% had medical complexity. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to support transition centered on the parent-child role and parent self-efficacy. The challenges were: (1) comparison to normal babies, (2) caregiver mental health, (3) need for information. Ideas to support transition included, (1) support systems, (2) interventions using mobile health technology (3) improved communication to the primary care provider and (4) information regarding financial assistance programs. Specific subthemes differed in frequency counts between infants with and without medical complexity. CONCLUSIONS: Families often compare their preterm or high-risk infant to their peers and mothers feel great anxiety and stress. However, families often found hope and resilience in peer support and cited that in addition to information needs, interventions using mobile health technology and transition and financial systems could better support families after discharge.

Knowledge of Life-Long Cardiac Care by Adolescents and Young Adults with Congenital Heart Disease.

National management guidelines recommend that patients with moderate and complex congenital heart disease (CHD) receive life-long cardiac care (LLCC), guided in adulthood by an adult congenital heart disease (ACHD) specialist. However, the percentage of adult CHD patients who receive such care is quite low. Inadequate knowledge regarding LLCC may contribute to care interruption. We, therefore, sought to determine the knowledge of adolescents and young adults regarding LLCC. In this multi-center study, we administered a survey to patients 13-20 years of age with surgically repaired congenital heart disease. We assessed the understanding of both their need for LLCC and awareness of the type of recommended care providers. A total of 290/302 (96%) patients approached in the outpatient clinic setting (10 centers) agreed to study participation; mean age was 16.3 ± 2.3 years; patients were 62% male. While the need for LLCC was recognized by 78% of subjects, only 37% understood that an ACHD specialist in adulthood should guide this care. Only 37% of respondents stated that their current cardiology team had spoken to them about LLCC, but 90% wished to learn more. A substantial number of adolescents and young adults with moderate and complex CHD lack adequate knowledge about LLCC, but most have a desire to learn more about the type of care they will require in adulthood. Transition education/assessment ensuring successful transfer to adult-oriented care for this population should emphasize the importance of LLCC.

Inpatient admissions and costs of congenital heart disease from adolescence to young adulthood.

BACKGROUND: Health care utilization patterns and associated costs of congenital heart disease (CHD) in young adulthood are not well understood. METHODS: California State Inpatient Databases 2005 to 2009 were used to conduct a retrospective study on inpatient admissions of CHD patients 10 to 29 years old (n = 7,419) and of all patients of the same age (n = 1,195,233). RESULTS: Compared with all patients, annual admission costs of CHD patients monotonically decreased, from $13.9 million at age 10 to 14 years to $7.2 million at age 25 to 29 years, which were due to lower costs per admission and somewhat fewer annual hospitalizations. Admissions from the emergency department in CHD patients increased with age regardless of insurance status: at age 25 to 29 years, 62% of admissions with public insurance, 43% with private insurance, and 78% with no insurance were admitted from the emergency department. Cardiac surgery, catheterization, and electrophysiologic study admissions decreased with age in CHD patients, whereas admissions due to arrhythmia and congestive heart failures became more prevalent. Results from multivariate linear regression in CHD patients showed that cardiac surgery was the most costly factor, associated with $29,543 more in costs per admission, followed by the use of a children's hospital, at $10,533. Factors predicting lower costs included female gender, low-complexity CHD, and shorter stay, all P < .001. CONCLUSIONS: Compared with adolescents, young adults with CHD use fewer resources because the natural history of CHD results in fewer surgical admissions and more frequent but less expensive medical admissions.

Mind the Gap! Working Toward Gender Equity in Pediatric and Congenital Heart Disease: Present and Future.

Evidence from medicine and other fields has shown that gender diversity results in better decision making and outcomes. The incoming workforce of congenital heart specialists (especially in pediatric cardiology) appears to be more gender balanced, but past studies have shown many inequities. Gender-associated differences in leadership positions, opportunities presented for academic advancement, and recognition for academic contributions to the field persist. In addition, compensation packages remain disparate if evaluated based on gender with equivalent experience and expertise. This review explores these inequities and has suggested individual and institutional changes that could be made to recruit and retain women, monitor the climate of the institution, and identify and eliminate bias in areas like salary and promotions.

Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group.

AIMS: Congenital heart disease (CHD) is the most common congenital malformation. Despite the worldwide burden to patient wellbeing and health system resource utilization, tracking of long-term outcomes is lacking, limiting the delivery and measurement of high-value care. To begin transitioning to value-based healthcare in CHD, the International Consortium for Health Outcomes Measurement aligned an international collaborative of CHD experts, patient representatives, and other stakeholders to construct a standard set of outcomes and risk-adjustment variables that are meaningful to patients. METHODS AND RESULTS: The primary aim was to identify a minimum standard set of outcomes to be used by health systems worldwide. The methodological process included four key steps: (i) develop a working group representative of all CHD stakeholders; (ii) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; (iii) create the outcome set using a series of multi-round Delphi processes; and (iv) disseminate set worldwide. The Working Group established a 15-item outcome set, incorporating physical, mental, social, and overall health outcomes accompanied by tools for measurement and case-mix adjustment variables. Patients with any CHD diagnoses of all ages are included. Following an open review process, over 80% of patients and providers surveyed agreed with the set in its final form. CONCLUSION: This is the first international development of a stakeholder-informed standard set of outcomes for CHD. It can serve as a first step for a lifespan outcomes measurement approach to guide benchmarking and improvement among health systems.

Association of WIC Participation and Growth and Developmental Outcomes in High-Risk Infants.

The objective of this study was to describe the association of enrollment in the Special Supplemental Nutrition Program for Women, Infants and Children (WIC), the Supplemental Nutrition Assistance Program (SNAP), and infant growth and neurodevelopmental outcomes. Z scores and Bayley Scales of Infant and Toddler Development-Third Edition (Bayley-III) and Vineland Adaptive/Behavior Scale-II (VABS-II) scores represented primary outcomes. We conducted bivariate analyses and linear regression. Children who were enrolled in WIC or WIC/SNAP had weight z scores U (95% confidence interval [CI]) that were 1.32 (0.42-2.21) or 1.19 (0.16-2.23) units higher. Enrollment in WIC or WIC/SNAP was associated with a higher score (95% CI) of 11.7 U (1.2-22.2 U) or 11.5 (0.1-22.9) for Bayley-III cognitive score and 10.1 U (1.9-19.1 U) or 10.3 (0.9-19.7) for the VABS-II composite score. These findings support increased advocacy for participation in WIC or WIC/SNAP for families with high-risk infants.

Late childhood stuttering.

PURPOSE: A study was conducted that examined factors that lead children who stutter at around age 8 years to persist in the disorder when they reach age 12 years. METHOD: Seventy-six children were verified to be stuttering at initial assessment. When they reached 12 years of age, they were classified as persistent or recovered. A range of measures was taken at the 2 age points, and measures were examined by recovery group. RESULTS: Although the tendency for more males than females to stutter was confirmed, the reasons for this tendency are not apparent for these speakers. Different patterns in speech were observed: Severity ratings of the recovered speakers dropped by age 12+. The severity ratings for the persistent speakers remained high at 12+, and dysfluency types tended to change from whole words to part words. Persistent and recovered speakers differed on temperamental performance at around age 8 years and performed differently on sensory and motor tasks at age 12+ years. CONCLUSIONS: Stuttering in late childhood affects mainly males. The later a child attends clinic, the longer he or she will stutter. Speech patterns of children who persist diverge from those who recover or who are fluent. As speakers persist, there are temperamental, sensory, and motor changes.

Short-term outcomes following implementation of a dedicated young adult congenital heart disease transition program.

OBJECTIVE: Transition from pediatric to adult care is a critical time for patients with congenital heart disease. Lapses in care can lead to poor outcomes, including increased mortality. Formal transition clinics have been implemented to improve success of transferring care from pediatric to adult providers; however, data regarding outcomes remain limited. We sought to evaluate outcomes of transfer within a dedicated transition clinic for young adult patients with congenital heart disease. DESIGN, SETTING, AND PATIENTS: We performed a retrospective analysis of all 73 patients seen in a dedicated young adult congenital heart disease transition clinic from January 2012 to December 2015 within a single academic institution that delivered pediatric and adult care at separate children's and adult hospitals, respectively. INTERVENTION AND OUTCOME MEASURES: Demographic characteristics including congenital heart disease severity, gender, age, presence of comorbidities, presence of cardiac implantable electronic devices, and type of insurance were correlated to success of transfer. Rate of successful transfer was evaluated, and multivariate analysis was performed to determine which demographic variables were favorably associated with transfer. RESULTS: Thirty-nine percent of patients successfully transferred from pediatric to adult services during the study period. Severe congenital heart disease (OR 4.44, 95% CI 1.25-15.79, P = .02) and presence of a cardiac implantable electronic device (OR 4.93, 95% CI 1.18-20.58, P = .03) correlated with transfer. Trends favoring successful transfer with presence of comorbidities and private insurance were also noted. CONCLUSIONS: Despite a dedicated transition clinic, successful transfer rates remained relatively low though comparable to previously published rates. Severity of disease and presence of implantable devices correlated with successful transfer. Other obstacles to transfer remain and require combined efforts from pediatric and adult care systems, insurance carriers, and policy makers to improve transfer outcomes.

Development of Quality Metrics in Ambulatory Pediatric Cardiology.

The American College of Cardiology Adult Congenital and Pediatric Cardiology (ACPC) Section had attempted to create quality metrics (QM) for ambulatory pediatric practice, but limited evidence made the process difficult. The ACPC sought to develop QMs for ambulatory pediatric cardiology practice. Five areas of interest were identified, and QMs were developed in a 2-step review process. In the first step, an expert panel, using the modified RAND-UCLA methodology, rated each QM for feasibility and validity. The second step sought input from ACPC Section members; final approval was by a vote of the ACPC Council. Work groups proposed a total of 44 QMs. Thirty-one metrics passed the RAND process and, after the open comment period, the ACPC council approved 18 metrics. The project resulted in successful development of QMs in ambulatory pediatric cardiology for a range of ambulatory domains.

Increasing clindamycin resistance among methicillin-resistant Staphylococcus aureus in 57 northeast United States military treatment facilities.

BACKGROUND: Increasing community-acquired methicillin-resistant Staphylococcus aureus (CA-MRSA) has led many to use clindamycin for CA-MRSA disease, whereas others suggest caution because of inducible clindamycin resistance and rely on drugs such as trimethoprim-sulfamethoxazole (TMP-SMX). AIM: To analyze the change in antibiotic susceptibility pattern of S. aureus isolates from 2001 to 2004 in a closed health care system, a period during which clindamycin and TMP-SMX use increased 99 and 62%, respectively. METHODS: S. aureus cultures from 57 military hospitals and clinics from 2001-2002 and 2003-2004 were compared for body site and antibiotic sensitivity, particularly the potentially inducible clindamycin-susceptible erythromycin-resistant pattern. A portion was evaluated by a double disk diffusion test (D test). RESULTS: Numbers of S. aureus-positive cultures obtained from "wound" sites rose significantly in both pediatric (138 to 215, P < 0.001) and adult (715 to 972, P < 0.001) isolates, with a rise in MRSA in children (6 of 138 to 60 of 215, P < 0.001) and in adults (161 of 715 to 324 of 972, P < 0.001). Clindamycin resistance increased among pediatric S. aureus isolates (1 of 207 to 13 of 327, P < 0.05), whereas >96% remained TMP-SMX-susceptible. Five methicillin-susceptible S. aureus (MSSA), 2 MRSA of 41 pediatric and 36 MSSA, 43 MRSA of 437 adult S. aureus specimens were D test-positive. CONCLUSIONS: In late 2004, most S. aureus from our region are still beta-lactam-susceptible. Most of the MRSA are still susceptible to clindamycin and do not appear to have inducible resistance. We must closely monitor the rates of constitutive and inducible clindamycin resistance as well as consider treatment alternatives that may slow the rate of clindamycin resistance.