bims-hylehe 2019-06-16 papers

Issue of 2019–06–16
four papers selected by
Richard James, University of Pennsylvania

J Pediatr. 2019 Jun 07. pii: S0022-3476(19)30543-8. [Epub ahead of print]

Transition Readiness in Adolescents and Young Adults with Heart Disease: Can We Improve Quality of Life?

Karen Uzark, Katherine Afton, Sunkyung Yu, Ray Lowery, Cynthia Smith, Mark D Norris.

OBJECTIVES: We previously reported common knowledge deficits and lack of transition readiness in 13- 25-year-olds with congenital or acquired heart disease. The aims of this study were to re-evaluate transition readiness in this cohort at follow-up and to examine the relationship between changes in transition readiness and quality of life (QOL).
STUDY DESIGN: In this prospective cohort study, patients completed the Transition Readiness Assessment and the Pediatric Quality of Life Inventory using an e-tablet, web-based format at a routine follow-up visit. Changes from initial to follow-up scores were evaluated.
RESULTS: Sixty-five percent of patients (106 of 164) completed follow-up assessments at a median age of 18.7 years (IQR, 16.5-21.2 years) at a median follow-up of 1 year. The average perceived knowledge deficit score (percent of items with no knowledge) at follow-up was 18.0 ± 15.2%, which decreased from 24.7 ± 16.5% (P < .0001). On a 100-point scale, the mean score for self-efficacy increased from 71.4 ± 17.0 to 76.7 ± 18.2 (P = .0004) and for self-management increased from 47.9 ± 18.4 to 52.0 ± 20.7 (P = .004). Although physical QOL did not change, the mean psychosocial QOL score increased significantly (P = .02). A decrease in the knowledge deficit score at follow-up was significantly associated with an increased psychosocial QOL score (P = .03). An increase in the self-efficacy score was associated with an increase in psychosocial QOL score (P = .04), especially social QOL (P = .02).
CONCLUSIONS: Although deficits in knowledge and self-management skills persist, transition readiness assessment and recognition of deficits can improve transition readiness with improved psychosocial QOL.

Keywords: adult congenital heart disease; healthcare transition; patient education; quality of life; self-management

DOI: https://doi.org/10.1016/j.jpeds.2019.04.060

Cardiol Young. 2019 Jun 10. 1-7

Psychometric testing of the developmental care scale for neonates with congenital heart disease.

Sara Arter, Elaine Miller, Tamilyn Bakas, David S Cooper.

PURPOSE: Developmental care of neonates with CHD is essential for proper neurodevelopment. Measurement of developmental care specific to these neonates is needed to ensure consistent implementation within and across cardiac ICUs. The purpose of this study was to psychometrically test the Developmental Care Scale for Neonates with Congenital Heart Disease, which measures the quality of developmental care provided by bedside nurses to neonates in the cardiac ICU.
METHODS: Psychometric testing was conducted with 119 cardiac ICU nurses to provide evidence of internal consistency reliability and construct validity. Participants were predominantly young (median = 32 years), white (90%) females (93%) with bachelor's degrees (78%) and a median experience in the cardiac ICU of 7 years.
RESULTS: Evidence of internal consistency reliability (α =.89) was provided with corrected item-total correlations ranging from .31 to .77. Exploratory factor analysis provided evidence of construct validity as a unidimensional scale, as well as a multidimensional scale consisting of four subscales: creating the external environment, assessment of family well-being, caregiver activities toward the neonate, and basic human needs.
CONCLUSIONS: Evidence of reliability and validity of the 31-item Developmental Care Scale for Neonates with Congenital Heart Disease was established with nurses caring for neonates in the cardiac ICU. This instrument will serve as a valuable outcome measure tasked with improving developmental care performance and makes it possible to identify relationships between developmental care performance and neonatal neurodevelopmental outcomes in future research.

Keywords: Developmental care; congenital heart disease; neonate; psychometrics

DOI: https://doi.org/10.1017/S1047951119000337

Congenit Heart Dis. 2019 May;14(3): 341-349

Comprehensive comparative outcomes in children with congenital heart disease: The rationale for the Congenital Catheterization Research Collaborative.

Christopher J Petit, Athar M Qureshi, Andrew C Glatz, Courtney E McCracken, Michael Kelleman, George T Nicholson, Jeffery J Meadows, Shabana Shahanavaz, Jeffrey D Zampi, Mark A Law, Joelle A Pettus, Bryan H Goldstein.

Clinical research in the treatment of patients with congenital heart disease (CHD) is limited by the wide variety of CHD manifestations and therapeutic options as well as the generally low incidence of CHD. The availability of comprehensive, contemporary outcomes studies is therefore limited. This inadequacy may result in a lack of data-driven medical decision making. In 2013, clinician scientists at two centers began a research collaboration, the Congenital Catheterization Research Collaborative (CCRC). Over time, the CCRC has grown to include nine cardiac centers from across the United States, with a common data coordinating center. The CCRC seeks to generate high-quality, contemporary, statistically robust, and generalizable outcomes research which can help address important clinical questions in the treatment of CHD. To date, the CCRC has reported on multicenter outcomes in: neonates with congenital aortic stenosis, infants undergoing right ventricular decompression for pulmonary atresia and intact ventricular septum, and infants with ductal-dependent pulmonary blood flow. The CCRC has been successful at leveraging large multicenter cohorts of patients in a contemporary period to perform comparative studies. In the future, the CCRC plans to continue to perform hypothesis-driven retrospective and prospective observational studies of CHD populations where controversy exists or where novel interventions or therapies have emerged. Quality improvement efforts including lesion-specific registry development may be an additional potential future target.

Keywords: Collaboration; Multicenter; Research

DOI: https://doi.org/10.1111/chd.12737

Semin Thorac Cardiovasc Surg. 2019 Jun 06. pii: S1043-0679(19)30069-3. [Epub ahead of print]

State of the Art: Tissue Engineering in Congenital Heart Surgery.

Rebekah Boyd, Frank Parisi, David Kalfa.

Congenital heart disease is the leading cause of death secondary to congenital abnormalities in the United States and the incidence has increased significantly over the last 50 years. For those defects requiring surgical repair, bioprosthetic xenografts, allografts, and synthetic materials have traditionally been used. However, none of these modalities offer the potential for growth and accommodation within the pediatric population. Tissue engineering has been an area of great interest in a variety of cardiac applications as an innovative solution to create a product that can grow and regenerate within the body over time. Over the last thirty years, the original tissue engineering paradigm of a scaffold seeded with cells and cultured in a bioreactor has been expanded upon to include innovative methods of decellularization and production of "off-the-shelf" tissue engineered products capable of in situ host cell repopulation. Despite progress in conceptual design and promising clinical results, widespread use of tissue engineered products remains limited due to both regulatory and ongoing scientific challenges. Here we describe the current state of the art with regards to in vitro, in vivo, and in situ tissue engineering as applicable within the field of congenital heart surgery and provide a brief overview of challenges and future directions.

Keywords: Tissue engineering; congenital heart surgery

DOI: https://doi.org/10.1053/j.semtcvs.2019.05.023