Congenital heart defects (CHD) are the leading cause of infant mortality among birth defects, and later morbidities and premature mortality remain problematic. Although genetic factors contribute significantly to cause CHD, specific genetic lesions are unknown for most patients. The National Heart, Lung, and Blood Institute-funded Pediatric Cardiac Genomics Consortium established the Congenital Heart Disease Genetic Network Study to investigate relationships between genetic factors, clinical features, and outcomes in CHD. The Pediatric Cardiac Genomics Consortium comprises 6 main and 4 satellite sites at which subjects are recruited, and medical data and biospecimens (blood, saliva, cardiovascular tissue) are collected. Core infrastructure includes an administrative/data-coordinating center, biorepository, data hub, and core laboratories (genotyping, whole-exome sequencing, candidate gene evaluation, and variant confirmation). Eligibility includes all forms of CHD. Annual follow-up is obtained for probands <1-year-old. Parents are enrolled whenever available. Enrollment from December 2010 to June 2012 comprised 3772 probands. One or both parents were enrolled for 72% of probands. Proband median age is 5.5 years. The one third enrolled at age <1 year are contacted annually for follow-up information. The distribution of CHD favors more complex lesions. Approximately, 11% of probands have a genetic diagnosis. Adequate DNA is available from 97% and 91% of blood and saliva samples, respectively. Genomic analyses of probands with heterotaxy, atrial septal defects, conotruncal, and left ventricular outflow tract obstructive lesions are underway. The scientific community’s use of Pediatric Cardiac Genomics Consortium resources is welcome.
Background: Increasing access to non-pharmacologic pain management modalities, including acupuncture, has the potential to reduce opioid overuse. A lack of insurance coverage for acupuncture could present a barrier for both patients and providers. The objective of this scoping review was to assess the existing literature on acupuncture insurance coverage in the United States and to identify knowledge gaps and research priorities. Methods: We utilized the Arksey and O’Malley framework to guide our scoping review methodology. We followed a pre-determined study protocol for the level-one abstract and level-two full text screenings. We synthesized information into subject-area domains and identified knowledge gaps. Results: We found a lack of published data on acupuncture coverage in 44 states, especially in the Midwest and the South. Where data were available, a large proportion of acupuncture users did not have insurance coverage. Consumer demand, state mandates, and efforts to reduce opioid use were motivations to cover acupuncture. Licensed acupuncturists were less likely to be reimbursed and were reimbursed at lower rates compared to physicians. Reported barriers encountered when implementing coverage included a lack of providers, challenges determining when to offer non-pharmacologic treatments, and a lack of evidence for clinical efficacy and cost-effectiveness. Conclusion: We found a lack of recent publications and data comparing regional coverage in the United States. A key challenge is that commercial insurance plan data are not in the public domain. Further research should assess insurance coverage implementation for acupuncture and measure the impact of policy changes on acupuncture utilization and rates of opioid overuse.
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