We sought to incorporate a community-based solution with a family health history (FHH) clinical support program (MeTree) integrated into well-patient appointments with the novel partnership of a public health state-level health information exchange (HIE). The Arkansas—Making History pilot project tested informatics compatibility among these systems and the patients’ electronic medical record (EPIC) in a rural clinic in the north central region of the state, having the state HIE as a means for patients to store and share their FHHs across multiple healthcare providers with updates in real time. We monitored for unexpected issues during the pilot and asked for the perspectives of patients and healthcare providers throughout the project to have a clear understanding of how to implement this project on a larger scale. The greatest barrier to project implementation was the inability of the state HIE to host or share the FHH data. We compensated for the lack of systems compatibility and documented valuable information about patient acceptability and usability of the MeTree platform, as well as gleaning important clinical outcome data from those who completed MeTree FHH accounts in an underserved area. Rural patients need additional technological support in the larger scaling of this project, both in available linkages to community clinics with patient-controlled options for how their data is stored and shared and in Internet connectivity and software options available for ease of use.
High-quality nursing research is important to healthcare and is precipitated by successful participant recruitment. Young adults aged 18 to 30 years are particularly difficult to recruit due to transitions during this time, which makes it more problematic to locate these individuals and may make it more difficult for them to prioritize the need for participation. This paper includes data from two cross-sectional survey design pilot studies that aimed to enroll young adults with congenital heart disease using a variety of recruitment methods. The number of participants enrolled in these two pilot studies (7 and 22) was much lower than expected but the recruitment challenges encountered were consistent with other research studies that have recruited young adult populations. After presenting these data and a discussion of the relevant literature, we conclude with proposed strategies for research recruitment of young adults for nurse scientists who directly impact evidence-based literature and practice with research contributions.
Abstract Advanced surgical repair procedures have resulted in the increased survival rate to adulthood of patients with CHD. The resulting new chronic conditions population is greater than one million in the United States of America and >1.2 million in Europe. This review describes the risks and effects of infective endocarditis – a systemic infectious process with high morbidity and mortality – on this population and examines the evidence to determine whether greater patient education on recognition of symptoms and preventative measures is warranted. The literature search included the terms “infective endocarditis” and “adult congenital heart disease”. Search refinement, the addition of articles cited by included articles, as well as addition of supporting articles, resulted in utilisation of 24 articles. Infective endocarditis, defined by the modified Duke Criteria, occurs at a significantly higher rate in the CHD population due to congenitally or surgically altered cardiac anatomies and placement of prosthetic valves. This literature review returned no studies in the past five years assessing knowledge of the definition, recognition of symptoms, and preventative measures of infective endocarditis in the adult CHD population. Existing data are more than 15 years old and show significant knowledge deficits. Studies have consistently shown the need for improved CHD patient knowledge with regard to infective endocarditis, and there is no recent evidence that these knowledge deficits have decreased. It is important to address and decrease knowledge deficits in order to improve patient outcomes and decrease healthcare utilisation and costs.
Abstract Newborn screening (NBS) is a public health program that detects genetic conditions in neonates enabling treatment before clinical symptoms manifest. Severe combined immune deficiency (SCID) is a primary immune deficiency found in the absence of functioning T and B lymphocytes. Hematopoietic cell transplantation is a potentially curative treatment if received within the first 42 months of life; without treatment, this condition is fatal in the first 2 years of life due to severe opportunistic infections. SCID was added to the recommended uniform panel of conditions for inclusion in state NBS programs in 2010. This manuscript examines the societal costs and benefits of NBS for SCID in Arkansas and implications to health services and social welfare. Total cost per year of all NBS for SCID and resulting early treatment for one patient with SCID in Arkansas is estimated at $1,078,714. Cost of late treatment of one patient with SCID is estimated at $1.43 million. Based on an expected diagnosis of one patient per year in Arkansas, this results in an estimated net cost savings for NBS for SCID in Arkansas of $351,286 per year. Based on cost‐effectiveness analysis, NBS for SCID in Arkansas is cost‐effective, with higher societal benefit than cost.
Adults with congenital heart disease (CHD) are an emerging adult heart disease subset, now outnumbering the pediatric population with CHD.We aimed to gain understanding and knowledge of what adults with CHD perceive as important for self-management and describe these needs across demographic factors, developmental characteristics, lesion severity, and quality of life.We used a descriptive mixed-methods online survey merging 4 instruments: Adult CHD Self-management Experience Questionnaire; Adult CHD Demographic Questionnaire; Adaptive Behavior Assessment System, Third Edition; and Stanford Quality of Life Visual Numeric. Participants with CHD 18 to 30 years of age with initial defect repair before 12 months of age were recruited through support from the Adult Congenital Heart Association, clinic adult CHD support groups, and newspaper advertising. Thematic analysis for short-answer questions, descriptive analysis for demographic data and the visual numeric, and intrument-specific scoring assistant software for the Adaptive Behavior Assessment System were used.We received 22 responses from 13 women and 9 men. These individuals represented 15 different heart defect diagnoses, mostly of moderate or complex lesion severity. Most had postsecondary education and were employed. Four prominent themes emerged related to self-management: desire for connectivity-psychological support; a plan for the future-education about health and life expectations; coping needs-skills for mental stress; and access to care-navigation of healthcare systems.Future longitudinal research and replication studies with larger samples are needed. Educational materials and targeted interventions that promote self-management benefit the aging adult with CHD population.
Sickle cell disease (SCD) is one of the most common genetic diseases, affecting nearly every organ, causing disability and reduced life expectancy. Newborn screening (NBS) is a successful public health initiative identifying SCD and other hemoglobinopathy disorders in infants to facilitate early treatment and management. A linked comprehensive surveillance system for SCD does not exist across programs in the United States (US), but collaborative efforts backed by agencies such as the Centers for Disease Control and Prevention and Centers for Medicare and Medicaid Services (CMS) are in place to generate population-based longitudinal public health surveillance to inform understanding of long-term outcomes.
Introduction: A recent study suggested an association between a history of delivering a child with congenital heart defects (CHDs) and development of cardiovascular diseases (CVDs) later in life; however, little is known about this possible association. Research Question: Do women with a CHD-affected pregnancy have a higher risk of CVD compared to women who had a pregnancy unaffected by a structural birth defect? Goals: To determine the CVD risk among women with a history of a CHD-affected pregnancy. Methods: A total of 1,423 women who delivered an infant with at least one of selected CHDs, and 1,020 women who delivered a live-born infant with no structural birth defects were identified from the Arkansas site of the National Birth Defects Prevention Study (August 1997 – December 2011) and linked to the Arkansas All-Payers Claims Database (2000-2022) to identify cases of CVD. CVD was identified using International Classification Diagnostic Ninth (ICD-9) and Tenth (ICD-10) codes and was categorized as ischemic, cerebrovascular, essential hypertension, other heart diseases, other CVDs, and any CVDs. Women were followed from the estimated date of delivery of their offspring (in years) until the date of the first CVD event, death, or the end of the study (January 1, 2023), whichever occurred first. Unadjusted and adjusted hazard ratios (aHR) with corresponding 95% confidence intervals (CIs) were calculated from Cox Proportional Hazard regression analyses. Results: Both adjusted and unadjusted models showed women with CHD-affected pregnancies had a higher risk of developing any type of CVD than those with no structural birth defects. Women with CHD-affected children had a 1.40 times risk of developing any type of CVD (aHR=1.4, 95% CI: 1.1, 1.8) after adjusting for potential confounders. For specific types of CVD, the risk was (aHR=3.7, 95% CI: 1.1, 13.1) for developing ischemic heart disease. Conclusion: Women with CHD-affected pregnancies have an increased risk of developing CVD in later life. CHD-affected pregnancies may be early signs of cardiometabolic dysregulation and CVD in later life. Additional studies are needed to further investigate this possible association.
