Portal de Periódicos da CAPES

Improvement in Interstage Survival in a National Pediatric Cardiology Learning Network

2015; Lippincott Williams & Wilkins; Volume: 8; Issue: 4 Linguagem: Inglês

10.1161/circoutcomes.115.001956

1941-7705

Jeffrey Anderson, Robert H. Beekman, John D. Kugler, Geoffrey L. Rosenthal, Kathy J. Jenkins, Thomas S. Klitzner, Gerard R. Martin, Steven R. Neish, David W. Brown, Colleen Mangeot, Eileen King, Laura E. Peterson, Lloyd Provost, Carole Lannon,

Healthcare Policy and Management

HomeCirculation: Cardiovascular Quality and OutcomesVol. 8, No. 4Improvement in Interstage Survival in a National Pediatric Cardiology Learning Network Free AccessResearch ArticlePDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissionsDownload Articles + Supplements ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toSupplemental MaterialFree AccessResearch ArticlePDF/EPUBImprovement in Interstage Survival in a National Pediatric Cardiology Learning Network Jeffrey B. Anderson, MD, MPH, MBA, Robert H. BeekmanIII, MD, John D. Kugler, MD, Geoffrey L. Rosenthal, MD, PhD, Kathy J. Jenkins, MD, Thomas S. Klitzner, MD, PhD, Gerard R. Martin, MD, Steven R. Neish, MD, David W. Brown, MD, Colleen Mangeot, MS, Eileen King, PhD, Laura E. Peterson, BSN, SM, Lloyd Provost, MS and Carole Lannon, MD, MPHfor the National Pediatric Cardiology Quality Improvement Collaborative Jeffrey B. AndersonJeffrey B. Anderson From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Robert H. BeekmanIIIRobert H. BeekmanIII From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , John D. KuglerJohn D. Kugler From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Geoffrey L. RosenthalGeoffrey L. Rosenthal From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Kathy J. JenkinsKathy J. Jenkins From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Thomas S. KlitznerThomas S. Klitzner From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Gerard R. MartinGerard R. Martin From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Steven R. NeishSteven R. Neish From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , David W. BrownDavid W. Brown From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Colleen MangeotColleen Mangeot From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Eileen KingEileen King From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Laura E. PetersonLaura E. Peterson From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). , Lloyd ProvostLloyd Provost From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). and Carole LannonCarole Lannon From the Heart Institute, Cincinnati Children's Hospital Medical Center, OH (J.B.A., R.H.B.); Children's Hospital & Medical Center, Omaha, NE (J.D.K.); University of Maryland School of Medicine, Baltimore (G.L.R.); Boston Children's Hospital Medical Center, Boston, MA (K.J.J., D.W.B.); Mattel Children's Hospital at University of California, Los Angeles (T.S.K.); Children's National Medical Center, Washington, DC (G.R.M.); University of Texas Health Center, San Antonio (S.R.N.); Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.M., E.K.); Health Care Consultant, Boston, MA (L.E.P.); Associates in Process Improvement, Austin, TX (L.P.); and The James M. Anderson Center for Clinical Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (C.L.). and for the National Pediatric Cardiology Quality Improvement Collaborative Originally published9 Jun 2015https://doi.org/10.1161/CIRCOUTCOMES.115.001956Circulation: Cardiovascular Quality and Outcomes. 2015;8:428–436Other version(s) of this articleYou are viewing the most recent version of this article. Previous versions: January 1, 2015: Previous Version 1 Goals and Vision of the ProgramInfants 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.Local Challenges in ImplementationThere 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 forms of univentricular CHD.8,12–16 Although NPC was designed as a learning collaborative, it was unclear whether teams of caregivers would be willing or interested in changing practices or whether there would continue to be persistent variation. A second challenge was the linkage between process measures and clinical outcomes. Although expert opinion and literature (where available) were used to design clinical practices expected to be related to reduction in mortality, it was unclear at the onset of the collaborative, whether adherence to these specific practices would indeed move mortality. We expected challenges in measuring adherence to processes and measuring outcomes in a learning network that would have rolling enrollment with new centers joining each year. Finally, it was felt to be essential that clinical care teams actively participate in the collaborative, including attending face-to-face NPC-QIC meetings. There was some concern that it would be difficult to gain institutional buy-in locally, so clinical teams would have support to do this work. The challenges of team buy-in and implementation of change practices were primarily addressed building the program with engagement of national leaders in the field of congential heart disease. We addressed the measurement challenges by working closely with experts in statistical process control (SPC) from the James M. Anderson Center for Health Systems Excellence at Cincinnati Children's Hospital Medical Center and the consultant firm Associates in Process Improvement.Design of the InitiativeConceptual ModelNPC-QIC is a longitudinal learning community modeled after the Institute of Medicine learning healthcare system framework.17 These networks are multisite collaborations that focus on both improvement and research and engage patients, families, clinicians, and researchers in working together to improve outcomes. They provide a resource for understanding variation in clinical care and opportunities to test changes in clinical practice to improve care. Large networks with registries provide the infrastructure to gather information on patients across treatment centers and to understand differences in care processes and clinical outcomes and to reduce unnecessary variation.18–20 Learning networks may be especially useful in rare medical problems, such as complex CHD, where no one center is able to care for enough cases to learn about potential optimal practices. Regional and national networks and databases have also been established to better understand care of pediatric cancer, inflammatory bowel disease, neonatal management, and cystic fibrosis.21–24Improvement MethodologyNPC-QIC's improvement method is based on an adapted Institute for Healthcare Improvement's Breakthrough Series Model, which incorporates knowledge about dissemination and behavior change to support practice change.25 Pediatric cardiology centers participate through local teams comprised of a physician champion, nursing, nutrition, and family representatives. Each month, teams submit data on patient status and care processes; postreports of their progress; participate in webinars and a listserv; and test changes to improve their systems. Teams receive monthly reports from NPC-QIC demonstrating results of their local clinical processes and outcomes, as well as those of the entire network for benchmarking (Table 1). Semiannual learning session workshops bring teams and parents together to share lessons learned about clinical process changes.Table 1. Key Metrics Reported on Each Patient in the NPC-QIC RegistryMeasureGoalData DefinitionsMortality0%Numerator: cumulative no. of deaths between discharge after Norwood repair and completion of stage 2 repair (ie, the interstage)Denominator: cumulative no. of parents who had a Glenn, died, or had a heart transplantMortality G·chart***No. of patients who were admitted for glenn surgery between patients who diedMajor event readmission0%Numerator: no. of interstage readmissions for a major eventDenominator: no. of patients who had at least 1 interstage day n the month/100Major event G chart***No. of patients who were admitted for Glenn surgery between patients who had a major event readmissionAverage daily weight gain90%Numerator: number achieving a minimum age-appropriate daily weight gain between Norwood discharge and Glenn admissionDenominator: no. of patients admitted for Glenn surgeryWeight for length achievement***No. of patients with adequate growth between patients with growth failure events. A growth failure event is defined as decreasing ≥2Weight for length percentile bands over the course of the interstage (Norwood discharge to Glenn admission)Proportion of discharges with identified discharge coordinator100%Numerator: no. of discharges with identified discharge coordinatorDenominator: no. of patients discharged alive after NorwoodProportion of discharges with complete preventative care plan100%Numerator: no. of discharges with documented immunization status at discharge, and plan for RSV and influenza prevention discussedDenominator: no. of patients discharged alive after Norwood where site indicates that routine immunizations are recommended during the interstageProportion of discharges with written medication list100%Numerator: no. of discharges with written medication list providedDenominator: no. of patients discharged alive after NorwoodProportion of discharges with written Red-Flag Action Plan100%Numerator: no. of discharges with written red-flag action plan provided to familiesDenominator: no. of patients discharged alive after NorwoodProportion of discharges with written nutrition plan100%Numerator: no. of discharges with written nutrition plan provided to familiesDenominator: no. of patients discharged alive after NorwoodProportion of discharges with follow-up plan with PCP and primary cardiologist100%Numerator: no. of discharges with identified PCP, identified primary cardiologist, and scheduled appointments or contact information for self-schedulingDenominator: no. of patients discharged alive after NorwoodProportion of clinic visits with identified postclinic care coordinator100%Numerator: no. of clinic visits with an individual or group identified for coordinating the outpatient management of the patientDenominator: total no. of clinic visits for interstage population that monthProportion of clinic visits with updated preventative care plan100%Numerator: no. of clinic visits with documented immunization status and plan for RSV and influenza prevention discussedDenominator: no. of clinic visits during the month where site indicates that routine immunizations are recommended during the interstageProportion of clinic visits with updated written medication list100%Numerator: no. of clinic visits with updated written medication list providedDenominator: total no. of clinic visits for interstage population that monthProportion of clinic visits with updated written red-flag action plan100%Numerator: no. of clinic visits with updated red-flag action plan providedDenominator: total no. of clinic visits for interstage population that monthProportion of clinic visits with growth parameter documentation100%Numerator: no. of clinic visits where weight, weight for age percentile, average daily weight gain and current caloric intake is documentedDenominator: total no. of clinic visits for interstage population that monthProportion of clinic visits with updated nutrition plan100%Numerator: no. of clinic visits with updated nutrition plan providedDenominator: total no. of clinic visits for interstage population that monthProportion of clinic visits where clinic visit information was communicated to PCP100%Numerator: no. of clinic visits with documented communication to PCP of clinic visit informationDenominator: total no. of clinic visits for interstage population that monthPCP indicates primary care physician; and RSV, respiratory syncytial virus.Theory for Mortality ImprovementEvidence (literature, where available) and expert opinion were used to identify clinical practices expected to be related to improvement in interstage mortality (key driver diagram: Figure 1). These care processes are grouped into 4 domains or key drivers: (1) care coordination, (2) care transitions, (3) interstage growth, and (4) engaging families. Example processes include applying standard Norwood discharge procedures, providing families with a written action plan for acting on clinical Red Flags that may arise in the interstage and communicating the care plan to the infant's primary care physician at the time of discharge after stage 1 palliation and when updated at interstage clinic visits.Download figureDownload PowerPointFigure 1. National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) key driver diagram.To address concerns for buy-in from local teams and institutions, several steps were taken. The leadership of NPC-QIC was made up of a group of national experts in CHD. The Joint Council on Congenital Heart Disease (JCCHD) was formed in 2003 as an alliance between pediatric cardiologists, congenital cardiothoracic surgeons, and adult CHD specialists. This group founded NPC-QIC in 2006. This leadership at the national level gave instant clinical credibility to the collaborative. At the local team level, NPC-QIC leadership made a point to encourage local teams to include clinician and parent involvement, allowing parental voice to push teams for improvement. NPC-QIC leadership also worked with US News and World Report to add involvement in NPC-QIC as a line item point on the scoring system for Cardiac and Cardiothoracic Surgery Programs, increasing the value to institutions. In addition, the American Board of Pediatrics Maintenance of Certification Part 4 credit was made available to participating physicians. The engagement of clinical leaders and parents, as well as the alignment with US News and the American Board of Pediatrics, helped drive the involvement of institutions and teams and buy-in to quality improvement activities.Data CollectionThe NPC-QIC registry captures information about infants with a univentricular CHD who undergo a Norwood procedure or variant with ultimate plan for a stage 2 palliation. Institutional Review Boards at all participating sites approved their participation. Infants become eligible for registry inclusion when they are discharged home from their Norwood surgery; patients who are eligible and consented are enrolled in the registry. Patients who spend their entire interstage hospitalized are not eligible and are not included in the registry. At the time of this discharge, data from their surgery and initial hospitalization are captured. Additional clinical information is then collected from each outpatient visit and readmission to the hospital during the interstage and information about each interstage transplantation or mortality. Finally, data are collected on admission for stage 2 surgical palliation and the hospitalization that follows this surgery. Data are collected at the site level and entered into an electronic registry using the Research Electronic Data Capture system.Statistical MethodologyNPC-QIC uses SPC methods and charts to measure and report progress. This is a novel approach in the fields of pediatric cardiology and cardiac surgery. As with all rare diseases, the low incidence of HLHS presents a challenge to the ability to measure changes in care process or outcome performance using traditional statistical methods.26 Combining data from individual sites improves the statistical power to measure differences and the effects of changes over time. SPC methods combine rigorous time series analysis methods with graphical presentation of data, allowing meaningful interpretation of data despite the relatively small numbers of patients in the population of interest.27–29 SPC charts document statistical changes to a system using control limits, which define 3 SDs above and below the mean. Statistical rules determine when there has been a significant change to the system and identify measurement points that fall outside the statistical control limits. Several SPC charts are used by NPC-QIC to identify system changes. These include G charts, P charts, and cumulative sum (CuSum) charts. G charts track time and distance between rare events. In this case, NPC-QIC tracks the number of infants who successfully complete the interstage between mortalities. P charts document percentage of events, here tracking the percentage of mortalities per interstage patient for the collaborative on a monthly basis. Finally, a CuSum chart determines the accumulation of small changes to a system over time.Implementation of the InitiativeThe NPC-QIC interstage project was implemented in 2008 with a group of 6 pilot sites. Since then, the network has grown to 55 sites (Figure 2; Appendix A in the Data Supplement) with a rolling onboarding system, and now, it includes the majority of centers that perform staged palliation for univentricular CHD in the United States. Since 2008, there has been steady growth of the number of infants enrolled in the registry. However, since October 2012 when the 50th surgical site joined the network, only 4 additional surgical sites have been added, leading to a fairly stable system of surgical centers since late 2012. Self-audits by participating sites twice yearly indicate that >95% of eligible infants at participating centers are consented and included in the registry. Over half (54%) of centers report regularly involving parents of HLHS patients in their local improvement work. We have had few barriers in engaging care teams at local sites, but it has been a challenge to get each team to find and engage parents in the teams in a meaningful way. We have worked closely with a parent group, Sisters By Heart, to identify parents that would like to be involved at each center. However, working with parents on this type of project is not something that many clinicians have done before. However, with education and shared practices among sites, we have had steady improvement in parent involvement at the local level over time.Download figureDownload PowerPointFigure 2. Growth of National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). Growth in number of NPC-QIC teams (red) and patients enrolle