Socioeconomic Impact on Outcomes During the First Year of Life of Patients with Single Ventricle Heart Disease: An Analysis of the National Pediatric Cardiology Quality Improvement Collaborative Registry

2021 ◽  
Author(s):  
Sarah R. de Loizaga ◽  
Kristin Schneider ◽  
Andrew F. Beck ◽  
Huaiyu Zang ◽  
Nicholas Ollberding ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Heart Disease ◽  
Pediatric Cardiology ◽  
Single Ventricle ◽  
Socioeconomic Impact ◽  
First Year ◽  
Quality Improvement Collaborative ◽  
First Year Of Life

scholarly journals IMPACT Registry and National Pediatric Cardiology Quality Improvement Collaborative: Contributions to Quality in Congenital Heart Disease

2019 ◽  
Vol 10 (1) ◽  
pp. 72-80 ◽  
Author(s):  
Gerard R. Martin ◽  
Jeffrey B. Anderson ◽  
Robert N. Vincent
Keyword(s):  
Congenital Heart Disease ◽  
Quality Improvement ◽  
Heart Disease ◽  
Congenital Heart ◽  
Pediatric Cardiology ◽  
Device Closure ◽  
Stent Angioplasty ◽  
Quality Improvement Collaborative ◽  
The Common ◽  
The Impact

The IMproving Pediatric and Adult Congenital Treatments (IMPACT) Registry and the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) are two efforts initiated to improve outcomes in the congenital heart disease field. The IMPACT Registry is focused on evaluating the use, risks, adverse events (AEs), and outcomes associated with diagnostic and common interventional catheterization procedures in all children and adults with congenital heart disease. Utilizing a modular approach, the common procedures include diagnostic cardiac catheterization, atrial septal defect device closure, patent ductus arteriosus device closure, pulmonary valvuloplasty, aortic valvuloplasty, balloon and stent angioplasty of coarctation of the aorta, pulmonary artery balloon stent angioplasty, transcatheter pulmonary valve replacement, and electrophysiology procedures including radiofrequency ablation. To date, important observations on the common procedures have been made and a risk stratification methodology has been created to allow comparisons between centers in AEs and quality improvement activity. The registry is open to international participation. The NPC-QIC was developed to reduce mortality and improve the quality of life of infants with Hypoplastic Left Heart Syndrome (HLHS) during the interstage period between discharge from the Norwood operation and admission for the bidirectional Glenn procedure. Mortality in the interstage has been reduced by 44%. The IMPACT Registry and the NPC-QIC have demonstrated value to the congenital heart disease community. The IMPACT Registry, however, has not yet demonstrated an impact on patient outcomes. The NPC-QIC, which combines both a registry with a learning collaborative with specific aims, key drivers, and change strategies, has made more significant gains with reductions in variation, growth failures, and mortality.

Identifying best practices in interstage care: using a positive deviance approach within the National Pediatric Cardiology Quality Improvement Collaborative

2019 ◽  
Vol 29 (3) ◽  
pp. 398-407 ◽  
Author(s):  
Katherine E. Bates ◽  
Sunkyung Yu ◽  
Colleen Mangeot ◽  
Judy A. Shea ◽  
David W. Brown ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Best Practices ◽  
Pediatric Cardiology ◽  
Positive Deviance ◽  
First Year ◽  
Quality Improvement Collaborative ◽  
Team Members ◽  
Control Centre ◽  
The One ◽  
And Control

AbstractIntroductionTo identify interstage best practices associated with lower mortality, we studied National Pediatric Cardiology Quality Improvement Collaborative centres registry using a positive deviance approach.MethodsPositive deviant and control centre team members were interviewed to identify potential interstage best practices. Subsequently, all collaborative centres were surveyed on the use of these practices to test their associations with centre mortality. Questionnaires were scored using Likert scales; the overall score was linearly transformed to a 0–100-point scale with higher scores indicating increased use of practices. Mortality was based on patients enrolled after a centre’s first year in the collaborative. Centre mortality rates were divided into tertiles. Survey scores for the low mortality tertile were compared with the other tertiles.ResultsFor this study, seven positive deviant and four control teams were interviewed. A total of 20 potential best practices were identified, including team composition, improvement practices, and parent involvement. Questionnaires were completed by 36/43 eligible centres, providing 1504 patients for analysis. Average survey score was 50.2 (SD 13.4). Average mortality was 6.1% (SD 4.1). There was no correlation between survey scores and mortality (r=0.14, p=0.41). The one practice associated with the low mortality tertile was frequency of discussion of interstage results: 58.3% of low mortality teams discussed results at least monthly versus 8.4% of the middle and high tertile centres (p=0.02).ConclusionsLow-mortality centres more frequently discuss interstage results than high-mortality centres. Heightened awareness of outcomes may influence practice; however, further study is needed to understand the variation in outcomes across centres.

scholarly journals Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Elena Mitteregger ◽  
Martina Wehrli ◽  
Manuela Theiler ◽  
Jana Logoteta ◽  
Irina Nast ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Motor Development ◽  
Congenital Heart ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
First Year ◽  
First Year Of Life ◽  
Neuromotor Development

Abstract Background Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children’s neuromotor development in the first year of life. Methods In this qualitative study, fourteen families were recruited. Their children were aged 1–3 years and had undergone open heart surgery within the first 6 months of life. Semi-structured interviews were audio-recorded and transcribed. The data was explored within an expert group, and a qualitative content analysis was conducted using VERBI MAXQDA software 2020. The study was conducted in accordance with the COREQ checklist. Results Parents of children with CHD reported several burdens and needs. Parental burdens concerned the child’s motor development, their own physical and psychological strain, and difficulties in communication with healthcare professionals. The needs, parents reported included supporting their child’s motor development, a medical coordinator, and better communication between healthcare professionals and parents. During the first phase of their children’s illness, parents underwent a dynamic transitional phase and expressed the need to rely on themselves, to trust their children’s abilities, and to regain self-determination in order to strengthen their self-confidence. Conclusions It is essential to involve parents of children with CHD at an early stage of decision-making. Parents are experts in their children and appreciate medical information provided by healthcare professionals. Interprofessional teamwork, partnering with parents, and continuous support are crucial to providing the best possible care for children and their families. Family-centred early motor intervention for CHD children might counteract the effect of parental overprotection and improve children’s motor development and thus strengthen child-parent interaction. In future work, we aim to evaluate a family-centred early motor intervention for children with CHD developed on the basis of this qualitative study. Trial registration Not applicable.

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