Nancy McClung^1,2, Jill Glidewell¹, Sherry L. Farr¹

Congenital Heart Disease, Vol.13, No.4, pp. 554-562, 2018, DOI:10.1111/chd.12605

Abstract Objective: To examine the financial burdens and mental health needs of families of children with special healthcare needs (CSHCN) with congenital heart disease (CHD).
Methods: Data from the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) were used to examine parent-reported financial burdens (out-of-pocket expenses, financial problems, employment impact, caregiving hours) and family members’ need for mental health services in families of CSHCN with CHD. Multivariable logistic regression was used to compare financial burdens and family members’ need for mental health services among CSHCN with and without CHD. Among CSHCN with CHD, multivariable logistic regression, stratified by… More >

Albert C. Hergenroeder¹, Douglas S. Moodie², Daniel J. Penny², Constance M. Wiemann¹, Blanca Sanchez-Fournier¹, Lauren K. Moore², Jane Head³

Congenital Heart Disease, Vol.13, No.4, pp. 548-553, 2018, DOI:10.1111/chd.12604

Abstract Objective: To describe changes in functional status between the last pediatric and first adult congenital heart disease (CHD) clinic visits in patients with moderate to severe CHD after implementing a healthcare transition (HCT) planning program.
Design: Quasi-experimental design. Patients were followed prospectively following the implementation of the intervention; Control patients transitioned from the Pediatric CHD Clinic into Adult CHD Clinic before the intervention.
Setting: Texas Children’s Hospital (TCH).
Patients: Sixteen to 25-year-olds, cognitively normal, English speaking patients with moderate to severe CHD who transitioned from the Pediatric to the Adult CHD clinic.
Interventions: An EMR-based transition planning tool (TPT) was… More >

Chien-Jung Lin¹, Eric Novak¹, Michael W. Rich¹, Joseph J. Billadello^1,2

Congenital Heart Disease, Vol.13, No.3, pp. 384-391, 2018, DOI:10.1111/chd.12582

Abstract Background: Adults with congenital heart disease (ACHD) have traditionally been viewed as an underinsured population. Whether this is true in the Affordable Care Act era is unknown. We determined insurance patterns in ACHD patients compared to the non-ACHD cardiology population in a contemporary cohort.
Methods: All cardiology outpatient visits between July 2016 and February 2017 to a large referral center in the United States were reviewed. The primary payer was categorized as health maintenance organization (HMO), preferred provider organization (PPO), Medicare, Medicaid, self-pay, or other. Diagnosis and lesion severity of ACHD were extracted from ICD-10 diagnostic codes and assigned according… More >

Paul C. Helm¹, Sebastian Kempert², Marc-André Körten¹, Wiebke Lesch³, Katharina Specht³, Ulrike M. M. Bauer^1,3

Congenital Heart Disease, Vol.13, No.3, pp. 377-383, 2018, DOI:10.1111/chd.12581

Abstract Background: Children and adolescents with congenital heart disease (CHD) and their families require qualified combined medical and psychosocial information, care, and counseling. This study aimed to analyze CHD patients’ and parents’ perception of disease-specific knowledge, state of health, and impairments experienced in everyday life, as well as factors influencing these perceptions.
Materials and Methods: Analyses were based on a survey among patients/parents recruited via the German National Register for Congenital Heart Defects (NRCHD). The total sample (N = 818) was divided into four groups: “Children” (176 patients), “Adolescents” (142 patients), “Adults” (269 patients), and “Parents” (231 parents). The patients were… More >

Kriti Puri¹, Peter Kazembe², Treasure Mkaliainga³, Msandeni Chiume³, Antonio G. Cabrera¹, Amy Sims Sanyahumbi¹

Congenital Heart Disease, Vol.13, No.2, pp. 334-341, 2018, DOI:10.1111/chd.12573

Abstract Malawi is one of the poorest nations in the world, ranked 151st among 195 countries by the World Bank, with an under-5-year mortality rate of 63 per 1000 live births. There are no previous studies describing the spectrum of inpatient pediatric cardiology consultations in sub-Saharan Africa. A descriptive cohort study was performed at Kamuzu Central Hospital (KCH), a tertiary care hospital in Lilongwe, Malawi. Demographic, anthropometric, and clinical information for all cardiology consults patients aged 0–18 years admitted to the children’s wards over a period of 1 month was reviewed. Seventy-three consults and 69 echocardiograms were performed on 71 patients… More >

Sumeet S. Vaikunth^1,2, Roberta G. Williams³, Merujan Y. Uzunyan⁴, Han Tun⁵, Cheryl Barton³, Philip M. Chang⁵

Congenital Heart Disease, Vol.13, No.1, pp. 85-91, 2018, DOI:10.1111/chd.12549

Abstract 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… More >

Astrida Kaugars¹, Clarissa Shields², Cheryl Brosig³

Congenital Heart Disease, Vol.13, No.1, pp. 72-78, 2018, DOI:10.1111/chd.12547

Abstract Objective: The study examined parent stress and health-related quality of life (HRQOL) among families of children with congenital heart disease (CHD) referred for psychological services.
Methods: Parents of 54 children (85% boys) aged 3 to 13 (M_age = 7.48, SD = 2.38) completed measures to assess parenting stress (Parenting Stress Index – Short Form; Pediatric Inventory for Parents) and the PedsQL Family Impact Module. Medical information was retrieved from medical record review.
Results: Half of parents of children with single ventricle anatomy had clinically significant levels of parenting stress. Parents of children with single ventricle anatomy reported more frequent illnessrelated… More >

Jill M. Steiner¹, James N. Kirkpatrick¹, Susan R. Heckbert², Asma Habib¹, James Sibley³, William Lober³, J. Randall Curtis³

Congenital Heart Disease, Vol.13, No.1, pp. 65-71, 2018, DOI:10.1111/chd.12524

Abstract Introduction: There is relatively sparse literature on the use of administrative datasets for research in patients with adult congenital heart disease (ACHD). The goal of this analysis is to examine the accuracy of administrative data for identifying patients with ACHD who died.
Methods: A list of the International Classification of Diseases codes representing ACHD of moderate- or great-complexity was created. A search for these codes in the electronic health record of adults who received care in 2010–2016 was performed, and used state death records to identify patients who died during this period. Manual record review was completed to evaluate performance… More >

Dana Y. Fuhrman^1,2, Lan Nguyen³, Morgan Hindes³, John A. Kellum²

Congenital Heart Disease, Vol.14, No.6, pp. 963-967, 2019, DOI:10.1111/chd.12862

Abstract Background: There are significant implications for kidney disease in young adults with congenital heart disease. Prior investigations have not focused on the use of urinary tubular biomarkers for the early identification of kidney disease in this growing patient group.
Objective: Determine if young adults with congenital heart disease have differences in the baseline concentration of urinary tubular biomarkers when compared to healthy young adults.
Design/Methods: In a pilot case control study, 30 patients from 18 to 35 years of age with congenital heart disease and a normal serum creatinine were recruited during a routine follow-up visit. In the same age… More >

Natalie Bottega¹, Isabelle Malhamé², Liming Guo¹, Raluca Ionescu‐Ittu¹, Judith Therrien¹, Ariane Marelli¹

Congenital Heart Disease, Vol.14, No.5, pp. 735-744, 2019, DOI:10.1111/chd.12811

Abstract Background: The number of women with congenital heart disease (CHD) of reproductive age is increasing, yet a description of trends in pregnancy and delivery outcomes in this population is lacking.
Objective: To assess secular trends in pregnancy rates, delivery outcomes, and related health care utilization in the adult female CHD population in Quebec, Canada.
Methods: The Quebec CHD database was used to construct a cohort with all women with CHD aged 18‐45 years between 1992 and 2004. Pregnancy and delivery rates were determined yearly and compared to the general population. Secular trends in pregnancy and delivery rates were assessed with… More >