Laura E. Peterson

Improvement in Interstage Survival in a National Pediatric Cardiology Learning Network

Infants with univentricular congenital heart disease (CHD), including those with hypoplastic left heart syndrome (HLHS), regularly pose dilemmas in decision-making because their anatomy and physiology are often unique and variable. The typical staged surgical course for infants with complex univentricular anatomy with systemic outflow obstruction begins with the Norwood (stage 1) operation or variant shortly after birth, followed several months later by superior cavopulmonary anastomosis (stage 2 palliation) with an ultimate goal of a Fontan-type operation several years later.1–3 Improvement in surgical and postoperative management has led to considerable improvement in early post-Norwood survival in the recent era.4–7 However, after the Norwood procedure and before stage 2 palliation, a high-risk time period termed interstage, mortality has been previously been reported at 10% to 15%.8–10 The rare nature of this disorder has limited robust learning about successful strategies to improve survival undertaken by single-surgical centers, and a gap exists in our ability to further improve mortality in this population. The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), the first multicenter learning network within pediatric cardiology,11 was established with the goal of improving care and outcomes for children with univentricular heart after the Norwood operation and specifically to (1) improve interstage mortality, (2) decrease interstage growth failure, and (3) reduce interstage hospital readmissions for major medical events. There were several perceived challenges to success in changing clinical outcomes before starting the NPC-QIC collaborative. A primary challenge in collaboration among multiple sites can be agreement on best practices that should be implemented. This is especially true for rare diseases, such as univentricular heart disease, where evidence-based clinical guidelines are not available to clinicians. As noted above, major variation persists in management practices among individuals and institutions caring for children with HLHS and other …

Assessment of the Quality of Cost Analysis Literature in Physical Therapy

Background: Policy makers, payers, and other stakeholders increasingly call for greater evidence of the cost-effectiveness of health care interventions. Objective: The purposes of this study were to identify and rate the quality of cost analysis literature in physical therapy and to report summary information on the findings from the reviewed studies. Design: This study was a targeted literature review and rating of relevant studies published in the last decade using a quality evaluation tool for economic studies. Measurements: The Quality of Health Economic Studies (QHES) instrument was used to obtain quality scores. Results: Ninety-five in-scope studies were identified and rated using the QHES instrument. The average quality score was 82.2 (SD=15.8), and 81 of the studies received a score of 70 or higher, placing them in the “good” to “excellent” quality range. Investigators in nearly two thirds of the studies found the physical therapy intervention under investigation to be cost-effective. Limitations: The small number of studies meeting the inclusion criteria was a limitation of the study. Conclusions: The quality of the literature regarding the cost-effectiveness of physical therapy is very good, although the magnitude of this body of literature is small. Greater awareness of the strengths and limitations of cost analyses in physical therapy should provide guidance for conducting high-quality cost-effectiveness studies as demand increases for demonstrations of the value of physical therapy.

Pediatric Collaborative Networks for Quality Improvement and Research

Despite efforts of individual clinicians, pediatric practices, and institutions to remedy continuing deficiencies in pediatric safety and health care quality, multiple gaps and disparities exist. Most pediatric diseases are rare; thus, few practices or centers care for sufficient numbers of children, particularly in subspecialties, to achieve large and representative sample sizes, and substantial between-site variation in care and outcomes persists. Pediatric collaborative improvement networks are multi-site clinical networks that allow practice-based teams to learn from one another, test changes to improve quality, and use their collective experience and data to understand, implement, and spread what works in practice. The model was initially developed in 2002 by an American Board of Pediatrics Workgroup to accelerate the translation of evidence into practice, improve care and outcomes for children, and to serve as the gold standard for the performance in practice component of Maintenance of Certification requirements. Many features of an improvement network derive from the Institute for Healthcare Improvements collaborative improvement model Breakthrough Series, including focus on a high-impact condition or topic; providing support from clinical content and quality improvement experts; using the Model for Improvement to set aims, use data for feedback, and test changes iteratively; providing infrastructure support for data collection, analysis and reporting, and quality improvement coaching; activities to enhance collaboration; and participation of multidisciplinary teams from multiple sites. In addition, they typically include a population registry of the children receiving care for the improvement topic of interest. These registries provide large and representative study samples with high-quality data that can be used to generate information and evidence, as well as to inform clinical decision making. In addition to quality improvement, networks serve as large-scale health system laboratories, providing the social, scientific, and technical infrastructure and data for multiple types of research. Statewide, regional, and national pediatric collaborative networks have demonstrated improvements in primary care practice as well as care for chronic pediatric diseases (eg, asthma, cystic fibrosis, inflammatory bowel disease, congenital heart disease), perinatal care, and patient safety (eg, central line-associated blood stream infections, adverse medication events, surgical site infections); many have documented improved outcomes. Challenges to spreading the improvement network model exist, including the need for the identification of stable funding sources. However, these barriers can be overcome, allowing the benefits of improved care and outcomes to spread to additional clinical and safety topics and care processes for the nations children.

Collaborative Chronic Care Networks (C3Ns) to Transform Chronic Illness Care

Despite significant gains by pediatric collaborative improvement networks, the overall US system of chronic illness care does not work well. A new paradigm is needed: a Collaborative Chronic Care Network (C3N). A C3N is a network-based production system that harnesses the collective intelligence of patients, clinicians, and researchers and distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of “operating systems” on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation design provides a scientific operating system or “laboratory” for what works and how to make it work. Data support testing and research on multiple levels: comparative effectiveness research for populations, evaluating care delivery processes at the care center level, and N-of-1 trials and other methods to select the best treatment of individual patient circumstances. Methods to reduce transactional costs to participate include a Federated IRB Model in which centers rely on a protocol approved at 1 central institutional review board and a “commons framework” for organizational copyright and intellectual property concerns. A fully realized C3N represents a discontinuous leap to a self-developing learning health system capable of producing a qualitatively different approach to improving health.

Special Challenges In Comparative Effectiveness Research On Children’s And Adolescents’ Health

The United States is undertaking a major expansion of comparative effectiveness research, with the potential to achieve systemwide improvements in health care quality, outcomes, and resource allocation. However, to achieve these improvements in childrens health and health care, comparative effectiveness research needs to be targeted, designed, conducted, and reported in ways that are responsive to the unique circumstances of children and adolescents. These include clinically important differences in the type and course of disease in children; demographic differences between the overall child and adult population in the United States, such as racial and ethnic makeup; and methodological issues involving study design. Our overarching point is that the base of evidence in pediatrics must not fall even further behind that for the adult population in an era of rapid advancement and funding of comparative effectiveness research.

Pediatric Collaborative Improvement Networks: Background and Overview

Multiple gaps exist in health care quality and outcomes for children, who receive <50% of recommended care. The American Board of Pediatrics has worked to develop an improvement network model for pediatric subspecialties as the optimal means to improve child health outcomes and to allow subspecialists to meet the performance in practice component of Maintenance of Certification requirements. By using successful subspecialty initiatives as exemplars, and features of the Institute for Healthcare Improvement’s Breakthrough Series model, currently 9 of 14 pediatric subspecialties have implemented collaborative network improvement efforts. Key components include a common aim to improve care; national multicenter prospective collaborative improvement efforts; reducing unnecessary variation by identifying, adopting, and testing best practices; use of shared, valid, high-quality real-time data; infrastructure support to apply improvement science; and public sharing of outcomes. As a key distinguisher from time-limited collaboratives, ongoing pediatric collaborative improvement networks begin with a plan to persist until aims are achieved and improvement is sustained. Additional evidence from within and external to health care has accrued to support the model since its proposal in 2002, including the Institute of Medicine’s vision for a Learning Healthcare System. Required network infrastructure systems and capabilities have been delineated and can be used to accelerate the spread of the model. Pediatric collaborative improvement networks can serve to close the quality gap, engage patients and caregivers in shared learning, and act as laboratories for accelerated translation of research into practice and new knowledge discovery, resulting in improved care and outcomes for children.

Quality Measures for the Care of Children With Otitis Media With Effusion

BACKGROUND: Current national efforts provide an opportunity to integrate performance measures into clinical practice and improve outcomes for children. OBJECTIVE: The goal of this study was to explore issues in developing and testing measures of care for children with otitis media with effusion (OME). METHODS: We assessed compliance with diagnostic, evaluation, and treatment measures for OME adapted from preliminary work of the Physician Consortium for Performance Improvement, using chart data in a convenience sample of practices from 2 primary care networks (Cincinnati Pediatric Research Group and the American Academy of Pediatrics Quality Improvement Innovation Network). Children aged 2 months to 12 years with at least 1 visit with a specified OME code during a 1-year period were included. RESULTS: Of 23 practices, 4 could not locate eligible visits. Nineteen practices submitted 378 abstractions (range: 3–37 per practice) with 15 identifying <30 eligible visits. Performance on diagnosis (33%) and hearing evaluation (29%) measures was low but high on measures of appropriate medication use (97% decongestant/antihistamine, 87% antibiotics, and 95% corticosteroids). Thirty-five percent of records documented antibiotic use concurrent with OME; only 16% of the 94 cases that cited reason for prescribing were appropriate. Using methods that consider appropriate clinical action, a more accurate rate for appropriate use of antibiotics was 68%. CONCLUSIONS: Coding, case finding, and evaluating appropriateness of treatment are some of the issues that will need to be considered to assess the care of children with OME. This study emphasizes the importance of testing proposed quality of care measures in “real-world” settings.

Digoxin Use Is Associated With Reduced Interstage Mortality in Patients With No History of Arrhythmia After Stage I Palliation for Single Ventricle Heart Disease

Background Interstage mortality (IM) remains significant after stage 1 palliation (S1P) for single‐ventricle heart disease (SVD), with many deaths sudden and unexpected. We sought to determine whether digoxin use post‐S1P is associated with reduced IM, utilizing the multicenter database of the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC). Methods and Results From June 2008 to July 2013, 816 infants discharged after S1P from 50 surgical sites completed the interstage to stage II palliation, transplant, or IM. Arrhythmia during S1P hospitalization or discharge on antiarrhythmic medications were exclusions (n=270); 2 patients were lost to follow‐up. Two analyses were performed: (1) propensity‐score adjusted logistic regression with IM as outcome and (2) retrospective cohort analysis for patients discharged on digoxin versus not, matched for surgical site and other established IM risk factors. Of 544 study patients, 119 (21.9%) were discharged on digoxin. Logistic regression analysis with propensity score, site‐size group, and digoxin use as predictor variables showed an increased risk of IM in those not discharged on digoxin (odds ratio, 8.6; lower confidence limit, 1.9; upper confidence limit, 38.3; P<0.01). The retrospective cohort analysis for 60 patients on digoxin (matched for site of care, type of S1P, post‐S1P ECMO use, genetic syndrome, discharge feeding route, ventricular function, tricuspid regurgitation, and aortic arch gradient) showed 0% IM in the digoxin at discharge group and an estimated IM difference between the 2 groups of 9% (P=0.04). Conclusions Among SVD infants in the NPCQIC database discharged post‐S1P with no history of arrhythmia, use of digoxin at discharge was associated with reduced IM.

Transparency in a Pediatric Quality Improvement Collaborative: A Passionate Journey by NPC-QIC Clinicians and Parents.

Transparency-sharing data or information about outcomes, processes, protocols, and practices-may be the most powerful driver of health care improvement. In this special article, the development and growth of transparency within the National Pediatric Cardiology Quality Improvement Collaborative is described. The National Pediatric Cardiology Quality Improvement Collaborative transparency journey is guided by equal numbers of clinicians and parents of children with congenital heart disease working together in a Transparency Work Group. Activities are organized around four interrelated levels of transparency (individual, organizational, collaborative, and system), each with a specified purpose and aim. A number of Transparency Work Group recommendations have been operationalized. Aggregate collaborative performance is now reported on the public-facing web site. Specific information that the Transparency Work Group recommends centers provide to parents has been developed and published. Almost half of National Pediatric Cardiology Quality Improvement Collaborative centers participated in a pilot of transparently sharing their outcomes achieved with one another. Individual centers have also begun successfully implementing recommended transparency activities. Despite progress, barriers to full transparency persist, including health care organization concerns about potential negative effects of disclosure on reputation and finances, and lack of reliable definitions, data, and reporting standards for fair comparisons of centers. The National Pediatric Cardiology Quality Improvement Collaboratives transparency efforts have been a journey that continues, not a single goal or destination. Balanced participation of clinicians and parents has been a critical element of the collaboratives success on this issue. Plans are in place to guide implementation of additional transparency recommendations across all four levels, including extension of the activities beyond the collaborative to support transparency efforts in national cardiology and cardiac surgery societies.

Prevalence and nature of adverse medical device events in hospitalized children.

Our objective was to describe the prevalence and nature of adverse medical device events (AMDEs) in tertiary care childrens hospitals. In our retrospective cohort study of patients at 44 childrens hospitals in the Pediatric Health Information System (PHIS), we included all inpatient stays with an AMDE-related diagnosis from January 1, 2004 to December 31, 2011. We identified AMDEs by diagnoses that specified a device in their definition. We included events present on admission as well as those complicating hospital stays. We described the characteristics of these admissions and patients, and stratified analysis by device category and presence of a complex chronic condition. Of 4,115,755 admissions in the PHIS database during the study period, 136,465 (3.3%) had at least 1 AMDE. Vascular access and nervous system devices together represented 44.4% of pediatric AMDE admissions. The majority (75.5%) of AMDE admissions were of children with complex chronic conditions. The most common age group was patients aged 2 years or less at the time of their first AMDE-related admission. AMDEs occur commonly in a population cared for in tertiary childrens hospitals. Research to more specifically delineate AMDEs and their predictors are next steps to understand and improve device safety in children.