128 results on '"Farr SL"'
Search Results
2. High-risk human papillomavirus reactivation in human immunodeficiency virus-infected women: risk factors for cervical viral shedding.
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Theiler RN, Farr SL, Karon JM, Paramsothy P, Viscidi R, Duerr A, Cu-Uvin S, Sobel J, Shah K, Klein RS, Jamieson DJ, Theiler, Regan N, Farr, Sherry L, Karon, John M, Paramsothy, Pangaja, Viscidi, Raphael, Duerr, Ann, Cu-Uvin, Susan, Sobel, Jack, and Shah, Keerti
- Abstract
Objective: To evaluate the presence of and estimate risk factors for reactivation of latent high-risk human papillomavirus (HPV) cervical infection in human immunodeficiency virus (HIV)-infected and HIV-uninfected women.Methods: Data from 898 women in the HIV Epidemiology Research Study (HERS) were used to evaluate cervical HPV latency and reactivation. Prior exposure to HPV types (16, 18, 31, 35, and 45) was determined by serologic testing at enrollment, and cervical shedding of HPV was detected by polymerase chain reaction at 6-month intervals. Human papillomavirus cervical shedding and sexual history were used to estimate rates of reactivation and recurrence. Repeated measures survival analysis was used to estimate hazard ratios and 95% confidence intervals for reactivation and recurrence. Rates of total HPV shedding (recurrence and reactivation) during follow-up were assessed by HIV status and rate ratios were calculated.Results: Reactivation of latent HPV infections was observed in HIV-infected women, but few reactivation events were identified in HIV-uninfected women. Factors consistently associated with reactivation in HIV-infected women included CD4 count less than 200/mm and age younger than 35 years. Women infected with HIV had 1.8 to 8.2 times higher rates of viral shedding (reactivation plus recurrence) compared with HIV-uninfected women.Conclusion: Women with a history of cervical HPV infection may be at risk of reactivation of latent viral infection even in the absence of sexual activity, and this risk is higher in women with HIV infection.Level Of Evidence: II. [ABSTRACT FROM AUTHOR]- Published
- 2010
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3. Risk factors for cesarean delivery among Puerto Rican women.
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Farr SL, Jamieson DJ, Rivera HV, Ahmed Y, and Heilig CM
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- 2007
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4. Pesticide exposure and timing of menopause: the Agricultural Health Study.
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Farr SL, Cai J, Savitz DA, Sandler DP, Hoppin JA, and Cooper GS
- Abstract
Age at menopause has implications for fertility and risk of hormonally related chronic diseases. Some pesticides disrupt reproductive hormones or are toxic to the ovary, but little is known about the association between pesticide exposure and timing of menopause. Cox proportional hazards modeling was used to examine the association between use of pesticides and age at menopause among 8,038 women living and working on farms in Iowa and North Carolina. Premenopausal women aged 35-55 years were followed from enrollment (1993-1997) to the date of their last menstrual period, or their follow-up interview (1999-2003) if still premenopausal. Women who experienced surgical menopause were censored at the date of surgery. Approximately 62% of the women reported ever mixing or applying pesticides; women who had never used pesticides were the comparison group for all analyses. After control for age, smoking status, and past use of oral contraceptives, the median time to menopause increased by approximately 3 months for women who used pesticides (hazard ratio = 0.87, 95% confidence interval: 0.78, 0.97) and by approximately 5 months for women who used hormonally active pesticides (hazard ratio = 0.77, 95% confidence interval: 0.65, 0.92). Pesticide use may be associated with a later age at menopause. [ABSTRACT FROM AUTHOR]
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- 2006
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5. Chronic disease risk factors among American Indian/Alaska Native women of reproductive age.
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Amparo P, Farr SL, Dietz PM, Amparo, Pamela, Farr, Sherry L, and Dietz, Patricia M
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- 2011
6. Depression, diabetes, and chronic disease risk factors among US women of reproductive age.
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Farr SL, Hayes DK, Bitsko RH, Bansil P, Dietz PM, Farr, Sherry L, Hayes, Donald K, Bitsko, Rebecca H, Bansil, Pooja, and Dietz, Patricia M
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- 2011
7. Age and racial/ethnic disparities in prepregnancy smoking among women who delivered live births.
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Tong VT, Dietz PM, England LJ, Farr SL, Kim SY, D'Angelo D, Bombard JM, Tong, Van T, Dietz, Patricia M, England, Lucinda J, Farr, Sherry L, Kim, Shin Y, D'Angelo, Denise, and Bombard, Jennifer M
- Published
- 2011
8. Depression screening and treatment among nonpregnant women of reproductive age in the United States, 1990-2010.
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Farr SL, Dietz PM, Williams JR, Gibbs FA, Tregear S, Farr, Sherry L, Dietz, Patricia M, Williams, Jessica R, Gibbs, Falicia A, and Tregear, Stephen
- Published
- 2011
9. Rapid human immunodeficiency virus testing on labor and delivery.
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Tepper NK, Branson BM, Farr SL, Jamieson DJ, Rahangdale L, and Cohan D
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- 2008
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10. Survival to Young Adulthood Among Individuals With Congenital Heart Defects and Genetic Syndromes: Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being.
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Downing KF, Lin AE, Nembhard WN, Rose CE, Andrews JG, Goudie A, Klewer SE, Oster ME, and Farr SL
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- Humans, Young Adult, Adolescent, Adult, Child, Female, Male, Health Surveys, Health Services Needs and Demand, Genetic Diseases, Inborn genetics, Genetic Diseases, Inborn diagnosis, Heart Defects, Congenital genetics
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- 2024
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11. Health Insurance Status and Access to Healthcare Among Young Adults with Congenital Heart Disease: from the Congenital Heart Survey To Recognize Outcomes, Needs and Well-beinG (CH STRONG), 2016-2019.
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Bolin EH, Ali MM, Farr SL, Oster ME, Klewer SE, Thomas RC 2nd, Seckeler MD, and Nembhard WN
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- Humans, Female, Male, Adult, Young Adult, United States, Medically Uninsured statistics & numerical data, Adolescent, Comorbidity, Behavioral Risk Factor Surveillance System, Heart Defects, Congenital epidemiology, Health Services Accessibility statistics & numerical data, Insurance Coverage statistics & numerical data, Insurance, Health statistics & numerical data
- Abstract
Having health insurance is associated with better access to healthcare and lower rates of comorbidity in the general population, but data are limited on insurance's impact on adults with congenital heart disease (ACHD). The Congenital Heart Survey To Recognize Outcomes, Needs and well-beinG (CH STRONG) was conducted among ACHD in three locations from 2016 to 2019. We performed multivariable logistic regression to determine the associations between health insurance and both access to healthcare and presence of comorbidities. We also compared health insurance and comorbidities among ACHD to similarly-aged individuals in the Behavioral Risk Factor Surveillance System (BRFSS) as a proxy for the general population. Of 1354 CH STRONG respondents, the majority were ≤ 30 years old (83.5%), and 8.8% were uninsured versus 17.7% in the BRFSS (p < 0.01). Compared to insured ACHD, uninsured were less likely to report regular medical care (adjusted odds ratio [aOR] 0.2, 95% confidence interval [CI] 0.1-0.3) and visited an emergency room more often (aOR 1.6, CI 1.0-2.3). Among all ACHD reporting disability, uninsured individuals less frequently received benefits (aOR 0.1, CI 0.0-0.3). Depression was common among uninsured ACHD (22.5%), but insured ACHD had lower rates of depression than insured in the BRFSS (13.3% vs. 22.5%, p < 0.01). In conclusion, rates of insurance were higher among ACHD compared to the general population. Nonetheless, uninsured ACHD inconsistently accessed healthcare and benefits. Further studies are needed to determine if insurance ameliorates the risk of morbidity as ACHD age., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
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- 2024
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12. Cardiovascular disease risk factors in congenital heart disease survivors are associated with heart failure.
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Landstrom AP, Spears T, D'Ottavio A, Chiswell K, Sommerhalter K, Soim A, Farr SL, Crume T, Book WM, Whitehead K, Botto LD, Li JS, and Hsu DT
- Abstract
Background: Despite advances in treatment and survival, individuals with congenital heart defects (CHD) have a higher risk of heart failure (HF) compared to the general population., Objective: To evaluate comorbidities associated with HF in patients with CHD with a goal of identifying potentially modifiable risk factors that may reduce HF-associated morbidity and mortality., Methods: Five surveillance sites in the United States linked population-based healthcare data and vital records. Individuals with an ICD-9-CM code for CHD aged 11-64 years were included and were stratified by presence of HF diagnosis code. Prevalence of death and cardiovascular risk factors based on diagnosis codes were compared by HF status using log-linear regression., Results: A total of 25,343 individuals met inclusion/exclusion criteria. HF was documented for 2.2% of adolescents and 12.9% of adults with CHD. Adolescents and adults with HF had a higher mortality than those without HF. In both age groups, HF was positively associated with coronary artery disease, hypertension, obesity, diabetes, and increased healthcare utilization compared to those without HF., Conclusions: Within this population-based cohort, over 1 in 50 adolescents and 1 in 8 adults with CHD had HF, which was associated with increased mortality. Modifiable cardiovascular comorbidities were associated with HF., Impact: Five sites in the United States linked population-based healthcare data and vital records to establish surveillance network for identifying the factors which influence congenital heart disease (CHD) outcomes. Survivors of CHD frequently develop heart failure across the lifespan. Over 1 in 50 adolescent and 1 in 8 adult survivors of CHD have heart failure which is associated with increased mortality compared to CHD survivors without heart failure. Heart failure development is associated with potentially modifiable cardiovascular risk factors such as hypertension, coronary artery disease, and diabetes. Controlling modifiable cardiovascular risk factors may serve to lower the risk of heart failure and mortality in survivors of congenital heart disease of all ages., (© 2024. The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc.)
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- 2024
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13. Racial and Ethnic Disparities in Health Care Usage and Death by Neighborhood Poverty Among Individuals With Congenital Heart Defects, 4 US Surveillance Sites, 2011 to 2013.
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Raskind-Hood CL, Kancherla V, Ivey LC, Rodriguez FH 3rd, Sullivan AM, Lui GK, Botto L, Feldkamp M, Li JS, D'Ottavio A, Farr SL, Glidewell J, and Book WM
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- Adolescent, Adult, Child, Child, Preschool, Female, Humans, Infant, Male, Middle Aged, Young Adult, Black or African American statistics & numerical data, Ethnicity statistics & numerical data, Hispanic or Latino statistics & numerical data, Neighborhood Characteristics, Patient Acceptance of Health Care ethnology, Patient Acceptance of Health Care statistics & numerical data, Poverty statistics & numerical data, Residence Characteristics statistics & numerical data, United States epidemiology, White People statistics & numerical data, Healthcare Disparities ethnology, Healthcare Disparities statistics & numerical data, Heart Defects, Congenital ethnology, Heart Defects, Congenital mortality, Heart Defects, Congenital therapy
- Abstract
Background: Socioeconomic factors may lead to a disproportionate impact on health care usage and death among individuals with congenital heart defects (CHD) by race, ethnicity, and socioeconomic factors. How neighborhood poverty affects racial and ethnic disparities in health care usage and death among individuals with CHD across the life span is not well described., Methods and Results: Individuals aged 1 to 64 years, with at least 1 CHD-related International Classification of Diseases, Ninth Revision, Clinical Modification ( ICD-9-CM ) code were identified from health care encounters between January 1, 2011, and December 31, 2013, from 4 US sites. Residence was classified into lower- or higher-poverty neighborhoods on the basis of zip code tabulation area from the 2014 American Community Survey 5-year estimates. Multivariable logistic regression models, adjusting for site, sex, CHD anatomic severity, and insurance-evaluated associations between race and ethnicity, and health care usage and death, stratified by neighborhood poverty. Of 31 542 individuals, 22.2% were non-Hispanic Black and 17.0% Hispanic. In high-poverty neighborhoods, non-Hispanic Black (44.4%) and Hispanic (47.7%) individuals, respectively, were more likely to be hospitalized (adjusted odds ratio [aOR], 1.2 [95% CI, 1.1-1.3]; and aOR, 1.3 [95% CI, 1.2-1.5]) and have emergency department visits (aOR, 1.3 [95% CI, 1.2-1.5] and aOR, 1.8 [95% CI, 1.5-2.0]) compared with non-Hispanic White individuals. In high poverty neighborhoods, non-Hispanic Black individuals with CHD had 1.7 times the odds of death compared with non-Hispanic White individuals in high-poverty neighborhoods (95% CI, 1.1-2.7). Racial and ethnic disparities in health care usage were similar in low-poverty neighborhoods, but disparities in death were attenuated (aOR for non-Hispanic Black, 1.2 [95% CI=0.9-1.7])., Conclusions: Racial and ethnic disparities in health care usage were found among individuals with CHD in low- and high-poverty neighborhoods, but mortality disparities were larger in high-poverty neighborhoods. Understanding individual- and community-level social determinants of health, including access to health care, may help address racial and ethnic inequities in health care usage and death among individuals with CHD.
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- 2024
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14. Bullying among children with heart conditions, National Survey of Children's Health, 2018-2020.
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Wright BN, Glidewell MJ, Downing KF, Vagi KJ, Fundora MP, and Farr SL
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Children with chronic illnesses report being bullied by peers, yet little is known about bullying among children with heart conditions. Using 2018-2020 National Survey of Children's Health data, the prevalence and frequency of being bullied in the past year (never; annually or monthly; weekly or daily) were compared between children aged 6-17 years with and without heart conditions. Among children with heart conditions, associations between demographic and health characteristics and being bullied, and prevalence of diagnosed anxiety or depression by bullying status were examined. Differences were assessed with chi-square tests and multivariable logistic regression using predicted marginals to produce adjusted prevalence ratios and 95% confidence intervals. Weights yielded national estimates. Of 69,428 children, 2.2% had heart conditions. Children with heart conditions, compared to those without, were more likely to be bullied (56.3% and 43.3% respectively; adjusted prevalence ratio [95% confidence interval] = 1.3 [1.2, 1.4]) and bullied more frequently (weekly or daily = 11.2% and 5.3%; p < 0.001). Among children with heart conditions, characteristics associated with greater odds of weekly or daily bullying included ages 9-11 years compared to 15-17 years (3.4 [2.0, 5.7]), other genetic or inherited condition (1.7 [1.0, 3.0]), ever overweight (1.7 [1.0, 2.8]), and a functional limitation (4.8 [2.7, 8.5]). Children with heart conditions who were bullied, compared to never, more commonly had anxiety (40.1%, 25.9%, and 12.8%, respectively) and depression (18.0%, 9.3%, and 4.7%; p < 0.01 for both). Findings highlight the social and psychological needs of children with heart conditions.
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- 2023
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15. Racial and ethnic disparities in socio-economic status, access to care, and healthcare utilisation among children with heart conditions, National Survey of Children's Health 2016-2019.
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Judge AS, Downing KF, Nembhard WN, Oster ME, and Farr SL
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- Child, Humans, Male, United States epidemiology, Female, Ethnicity, Health Services Accessibility, Patient Acceptance of Health Care, Healthcare Disparities, Child Health, Economic Status
- Abstract
Among children with and without heart conditions of different race/ethnicities, upstream social determinants of health, such as socio-economic status, access to care, and healthcare utilisation, may vary. Using caregiver-reported data from the 2016-19 National Survey of Children's Health, we calculated the prevalence of caregiver employment and education, child's health insurance, usual place of medical care in the past 12 months, problems paying for child's care, ≥2 emergency room visits, and unmet healthcare needs by heart condition status and race/ethnicity (Hispanic, non-Hispanic Black, and non-Hispanic White). For each outcome, we used multivariable logistic regression to generate adjusted prevalence ratios controlling for child's age and sex. Of 2632 children with heart conditions and 104,841 without, 65.4% and 58.0% were non-Hispanic White and 52.0% and 51.1% were male, respectively. Children with heart conditions, compared to those without, were 1.7-2.6 times more likely to have problems paying for healthcare, have ≥2 emergency room visits, and have unmet healthcare needs. Hispanic and non-Hispanic Black children with heart conditions, compared to non-Hispanic White, were 1.5-3.2 times as likely to have caregivers employed <50 weeks in the past year and caregivers with ≤ high school education, public or no health insurance, no usual place of care, and ≥2 emergency room visits. Children with heart conditions, compared to those without, may have greater healthcare needs that more commonly go unmet. Among children with heart conditions, Hispanic and non-Hispanic Black children may experience lower socio-economic status and greater barriers to healthcare than non-Hispanic White children.
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- 2023
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16. A machine learning model for predicting congenital heart defects from administrative data.
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Shi H, Book W, Raskind-Hood C, Downing KF, Farr SL, Bell MN, Sameni R, Rodriguez FH 3rd, and Kamaleswaran R
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- Humans, Bayes Theorem, Predictive Value of Tests, Algorithms, Machine Learning, Heart Defects, Congenital diagnosis, Heart Defects, Congenital epidemiology
- Abstract
Introduction: International Classification of Diseases (ICD) codes recorded in administrative data are often used to identify congenital heart defects (CHD). However, these codes may inaccurately identify true positive (TP) CHD individuals. CHD surveillance could be strengthened by accurate CHD identification in administrative records using machine learning (ML) algorithms., Methods: To identify features relevant to accurate CHD identification, traditional ML models were applied to a validated dataset of 779 patients; encounter level data, including ICD-9-CM and CPT codes, from 2011 to 2013 at four US sites were utilized. Five-fold cross-validation determined overlapping important features that best predicted TP CHD individuals. Median values and 95% confidence intervals (CIs) of area under the receiver operating curve, positive predictive value (PPV), negative predictive value, sensitivity, specificity, and F1-score were compared across four ML models: Logistic Regression, Gaussian Naive Bayes, Random Forest, and eXtreme Gradient Boosting (XGBoost)., Results: Baseline PPV was 76.5% from expert clinician validation of ICD-9-CM CHD-related codes. Feature selection for ML decreased 7138 features to 10 that best predicted TP CHD cases. During training and testing, XGBoost performed the best in median accuracy (F1-score) and PPV, 0.84 (95% CI: 0.76, 0.91) and 0.94 (95% CI: 0.91, 0.96), respectively. When applied to the entire dataset, XGBoost revealed a median PPV of 0.94 (95% CI: 0.94, 0.95)., Conclusions: Applying ML algorithms improved the accuracy of identifying TP CHD cases in comparison to ICD codes alone. Use of this technique to identify CHD cases would improve generalizability of results obtained from large datasets to the CHD patient population, enhancing public health surveillance efforts., (© 2023 Wiley Periodicals LLC.)
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- 2023
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17. Neighborhood social deprivation and healthcare utilization, disability, and comorbidities among young adults with congenital heart defects: Congenital heart survey to recognize outcomes, needs, and well-being 2016-2019.
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Judge A, Kramer M, Downing KF, Andrews J, Oster ME, Benavides A, Nembhard WN, and Farr SL
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- Child, Infant, Newborn, Humans, Female, Young Adult, Adolescent, Adult, Male, Comorbidity, Surveys and Questionnaires, Patient Acceptance of Health Care, Social Deprivation, Heart Defects, Congenital epidemiology
- Abstract
Background: Research on the association between neighborhood social deprivation and health among adults with congenital heart defects (CHD) is sparse., Methods: We evaluated the associations between neighborhood social deprivation and health care utilization, disability, and comorbidities using the population-based 2016-2019 Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) of young adults. Participants were identified from active birth defect surveillance systems in three U.S. sites and born with CHD between 1980 and 1997. We linked census tract-level 2017 American Community Survey information on median household income, percent of ≥25-year-old with greater than a high school degree, percent of ≥16-year-olds who are unemployed, and percent of families with children <18 years old living in poverty to survey data and used these variables to calculate a summary neighborhood social deprivation z-score, divided into tertiles. Adjusted prevalence ratios (aPR) and 95% confidence intervals (CI) derived from a log-linear regression model with a Poisson distribution estimated the association between tertile of neighborhood social deprivation and healthcare utilization in previous year (no encounters, 1 and ≥2 emergency room [ER] visits, and hospital admission), ≥1 disability, and ≥1 comorbidities. We accounted for age, place of birth, sex at birth, presence of chromosomal anomalies, and CHD severity in all models, and, additionally educational attainment and work status in all models except disability., Results: Of the 1435 adults with CHD, 43.8% were 19-24 years old, 54.4% were female, 69.8% were non-Hispanic White, and 33.7% had a severe CHD. Compared to the least deprived tertile, respondents in the most deprived tertile were more likely to have no healthcare visit (aPR: 1.5 [95% CI: 1.1, 2.1]), ≥2 ER visits (1.6 [1.1, 2.3]), or hospitalization (1.6 [1.1, 2.3]) in the previous 12 months, a disability (1.2 [1.0, 1.5]), and ≥1 cardiac comorbidities (1.8 [1.2, 2.7])., Conclusions: Neighborhood social deprivation may be a useful metric to identify patients needing additional resources and referrals., (© 2023 Wiley Periodicals LLC. This article has been contributed to by U.S. Government employees and their work is in the public domain in the USA.)
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- 2023
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18. Characterizing Opioid Use Disorder Encounters in the Midwest Region, USA.
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Liu Y, Sahil S, Farr SL, and Hagle HN
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- Humans, Male, Female, Retrospective Studies, Analgesics, Opioid therapeutic use, White, Opioid-Related Disorders epidemiology, Opioid-Related Disorders drug therapy
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Introduction: The opioid epidemic has taken its toll on the Midwest, a census region of the USA. The Midwest includes two census divisions: East North Central and West North Central. This study aimed (1) to characterize patient encounters of opioid use disorder (OUD) in the Midwest using the Health Facts
® database; and (2) to compare selected patient and facility characteristics between the two census divisions., Methods: This study was a sub-analysis of a retrospective analysis of the Health Facts® database. For the first objective, the unit of analysis was a patient encounter. Selected patient characteristics were age, gender, marital status, race, length of stay, and patient type. Selected facility characteristics were census division and urban versus rural areas. Descriptive statistics were conducted, and population-based rates of OUD were calculated for categorical variables. For the second objective, t tests were performed for age and length of stay, and chi-square tests for categorical variables., Results: A total of 13,129 (23.7%) encounters were in East North Central, and 42,271 (76.3%) in West North Central. Patient characteristics that were associated with the highest frequency of encounters were Caucasian, male, single, and other patient types. In addition, rural areas had a higher number of encounters than urban areas. Compared with East North Central, West North Central had a greater average age and a longer average length of stay (p < 0.001). West North Central had a significantly higher proportion of patient encounters associated with patients being male, African American, single, and facilities being in rural areas (p < 0.001)., Conclusion: Compared to East North Central, patient encounters of OUD were more frequent and the average length of stay was longer than in West North Central. A significantly higher proportion of patient encounters in West North Central were associated with patients being male, African American, and single, and facilities being in rural areas., (© 2023. The Author(s), under exclusive licence to Springer Healthcare Ltd., part of Springer Nature.)- Published
- 2023
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19. Positive Predictive Value of International Classification of Diseases, Ninth Revision, Clinical Modification , and International Classification of Diseases, Tenth Revision, Clinical Modification , Codes for Identification of Congenital Heart Defects.
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Ivey LC, Rodriguez FH 3rd, Shi H, Chong C, Chen J, Raskind-Hood CL, Downing KF, Farr SL, and Book WM
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- Humans, Adult, Predictive Value of Tests, Reproducibility of Results, Electronic Health Records, International Classification of Diseases, Heart Defects, Congenital diagnosis, Heart Defects, Congenital epidemiology
- Abstract
Background Administrative data permit analysis of large cohorts but rely on International Classification of Diseases, Ninth Revision, Clinical Modification ( ICD-9-CM ), and International Classification of Diseases, Tenth Revision, Clinical Modification ( ICD-10-CM ) codes that may not reflect true congenital heart defects (CHDs). Methods and Results CHDs in 1497 cases with at least 1 encounter between January 1, 2010 and December 31, 2019 in 2 health care systems, identified by at least 1 of 87 ICD-9-CM / ICD-10-CM CHD codes were validated through medical record review for the presence of CHD and CHD native anatomy. Interobserver and intraobserver reliability averaged >95%. Positive predictive value (PPV) of ICD-9-CM / ICD-10-CM codes for CHD was 68.1% (1020/1497) overall, 94.6% (123/130) for cases identified in both health care systems, 95.8% (249/260) for severe codes, 52.6% (370/703) for shunt codes, 75.9% (243/320) for valve codes, 73.5% (119/162) for shunt and valve codes, and 75.0% (39/52) for "other CHD" (7 ICD-9-CM / ICD-10-CM codes). PPV for cases with >1 unique CHD code was 85.4% (503/589) versus 56.3% (498/884) for 1 CHD code. Of cases with secundum atrial septal defect ICD-9-CM / ICD-10-CM codes 745.5/Q21.1 in isolation, PPV was 30.9% (123/398). Patent foramen ovale was present in 66.2% (316/477) of false positives. True positives had younger mean age at first encounter with a CHD code than false positives (22.4 versus 26.3 years; P =0.0017). Conclusions CHD ICD-9-CM / ICD-10-CM codes have modest PPV and may not represent true CHD cases. PPV was improved by selecting certain features, but most true cases did not have these characteristics. The development of algorithms to improve accuracy may improve accuracy of electronic health records for CHD surveillance.
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- 2023
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20. Survival From Birth Until Young Adulthood Among Individuals With Congenital Heart Defects: CH STRONG.
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Downing KF, Nembhard WN, Rose CE, Andrews JG, Goudie A, Klewer SE, Oster ME, and Farr SL
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- Infant, Humans, Young Adult, Adult, Child, Adolescent, Retrospective Studies, Infant Mortality, Ethnicity, Hispanic or Latino, Heart Defects, Congenital epidemiology
- Abstract
Background: Limited population-based information is available on long-term survival of US individuals with congenital heart defects (CHDs). Therefore, we assessed patterns in survival from birth until young adulthood (ie, 35 years of age) and associated factors among a population-based sample of US individuals with CHDs., Methods: Individuals born between 1980 and 1997 with CHDs identified in 3 US birth defect surveillance systems were linked to death records through 2015 to identify those deceased and the year of their death. Kaplan-Meier survival curves, adjusted risk ratios (aRRs) for infant mortality (ie, death during the first year of life), and Cox proportional hazard ratios for survival after the first year of life (aHRs) were used to estimate the probability of survival and associated factors. Standardized mortality ratios compared infant mortality, >1-year mortality, >10-year mortality, and >20-year mortality among individuals with CHDs with general population estimates., Results: Among 11 695 individuals with CHDs, the probability of survival to 35 years of age was 81.4% overall, 86.5% among those without co-occurring noncardiac anomalies, and 92.8% among those who survived the first year of life. Characteristics associated with both infant mortality and reduced survival after the first year of life, respectively, included severe CHDs (aRR=4.08; aHR=3.18), genetic syndromes (aRR=1.83; aHR=3.06) or other noncardiac anomalies (aRR=1.54; aHR=2.53), low birth weight (aRR=1.70; aHR=1.29), and Hispanic (aRR=1.27; aHR=1.42) or non-Hispanic Black (aRR=1.43; aHR=1.80) maternal race and ethnicity. Individuals with CHDs had higher infant mortality (standardized mortality ratio=10.17), >1-year mortality (standardized mortality ratio=3.29), and >10-year and >20-year mortality (both standardized mortality ratios ≈1.5) than the general population; however, after excluding those with noncardiac anomalies, >1-year mortality for those with nonsevere CHDs and >10-year and >20-year mortality for those with any CHD were similar to the general population., Conclusions: Eight in 10 individuals with CHDs born between1980 and 1997 survived to 35 years of age, with disparities by CHD severity, noncardiac anomalies, birth weight, and maternal race and ethnicity. Among individuals without noncardiac anomalies, those with nonsevere CHDs experienced similar mortality between 1 and 35 years of age as in the general population, and those with any CHD experienced similar mortality between 10 and 35 years of age as in the general population., Competing Interests: Disclosures None.
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- 2023
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21. Healthcare and Socioeconomic Outcomes Among Young Adults With Congenital Heart Defects and Functional Cognitive Disabilities, CH STRONG 2016 to 2019.
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Downing KF, Klewer SE, Nembhard WN, Goudie A, Oster ME, and Farr SL
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- Humans, Young Adult, Delivery of Health Care, Socioeconomic Factors, Cognition, Heart Defects, Congenital epidemiology, Heart Defects, Congenital psychology
- Abstract
Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest to declare.
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- 2023
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22. Reproductive Health Counseling and Concerns Among Women with Congenital Heart Defects With and Without Disabilities.
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Farr SL, Galindo M, Downing KF, Nembhard WN, Klewer SE, Judge AS, Bolin EH, Benavides A, and Oster ME
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- Pregnancy, Child, Humans, Female, Reproductive Health, Contraception methods, Counseling, Disabled Persons, Heart Defects, Congenital epidemiology
- Abstract
Background: Women with disabilities are less likely to receive reproductive health counseling than women without disabilities. Yet, little is known about reproductive health counseling and concerns among women with congenital heart defects (CHD) and disabilities. Methods: We used population-based survey data from 778 women aged 19 to 38 years with CHD to examine contraceptive and pregnancy counseling and pregnancy concerns and experiences by disability status, based on six validated questions on vision, hearing, mobility, cognition, self-care, and living independently. Multivariable Poisson regression was used to examine adjusted prevalence ratios between disability status and each outcome, adjusted for CHD severity, age, race/ethnicity, place of birth (Arkansas, Arizona, Georgia), and insurance type. Results: Women with disabilities ( n = 323) were 1.4 and 2.3 times more likely than women without disabilities ( n = 455) to receive clinician counseling on safe contraceptive methods and avoiding pregnancy because of their CHD. Women with CHD and disabilities, compared to those without disabilities, were more likely to be concerned about their ability to have children (aPR = 1.2) and to have delayed or avoided pregnancy (aPR = 2.2); they were less likely to have ever been pregnant (aPR = 0.7). Associations differed slightly across specific disability types. All associations remained after excluding 71 women with chromosomal anomalies. Conclusion: Among women with CHD, reproductive counseling, concerns, and experiences differ by disability status.
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- 2023
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23. Cardiology Care and Loss to Follow-Up Among Adults With Congenital Heart Defects in CH STRONG.
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Andrews JG, Strah D, Downing KF, Kern MC, Oster ME, Seckeler MD, Goudie A, Nembhard WN, Farr SL, and Klewer SE
- Subjects
- Humans, Adult, United States epidemiology, Follow-Up Studies, Surveys and Questionnaires, Registries, Heart Defects, Congenital epidemiology, Heart Defects, Congenital therapy, Cardiology
- Abstract
Many of the estimated 1.4 million adults with congenital heart defects (CHDs) in the United States are lost to follow-up (LTF) despite recommendations for ongoing cardiology care. Using 2016 to 2019 CH STRONG (Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG) data, we describe cardiac care among community-based adults with CHD, born in 1980 to 1997, identified through state birth defects registries. Our estimates of LTF were standardized to the CH STRONG eligible population and likely more generalizable to adults with CHD than clinic-based data. Half of our sample were LTF and more than 45% had not received cardiology care in over 5 years. Of those who received care, only 1 in 3 saw an adult CHD physician at their last encounter. Not knowing they needed to see a cardiologist, being told they no longer needed cardiology care, and feeling "well" were the top reasons for LTF, and only half of respondents report doctors discussing the need for cardiac follow-up., Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest to declare., (Copyright © 2023 Elsevier Inc. All rights reserved.)
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- 2023
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24. Overcoming treatment inertia for patients with heart failure: how do we build systems that move us from rest to motion?
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Sherrod CF, Farr SL, and Sauer AJ
- Subjects
- Humans, Time-to-Treatment, Heart Failure therapy
- Abstract
Competing Interests: Conflict of interest Dr. C.F.S. is supported by the National Heart, Lung, and Blood Institutes of Health Under Award Number T32HL110837; the content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Dr. S.L.F. is a consultant to Novartis and owns Zena Healthcare Group, LLC. Dr. A.J.S. is a consultant for Bayer, Vifor, Abbott, Impulse Dynamics, Boston Scientific, Medtronics, Edwards Life Sciences, Biotronik, Story Health, Acorai, and General Prognostics.
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- 2023
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25. Association Between Caregiver Burden and Patient Recovery After Left Ventricular Assist Device Implantation: Insights From Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support.
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Thomas M, Spertus JA, Andrei AC, Wu T, Farr SL, Warzecha A, and Grady KL
- Subjects
- Aged, Aged, 80 and over, Female, Humans, Male, Middle Aged, Quality of Life, Treatment Outcome, Patient Readmission statistics & numerical data, Heart Failure surgery, Heart-Assist Devices, Caregiver Burden epidemiology
- Abstract
Introduction: After left ventricular assist device (LVAD) implantation, caregivers may experience increasing burden because of new roles and responsibilities. We examined the association between caregiver burden at baseline and patient recovery after long-term LVAD implantation in patients ineligible for heart transplantation., Methods: Between October 1, 2015, and December 31, 2018, data from 60 patients with a long-term LVAD (age, 60-80 years) and caregivers through 1 postoperative year were analyzed. Caregiver burden was measured using the Oberst Caregiving Burden Scale, a validated instrument used for measuring caregiver burden. Patient recovery post-LVAD implantation was defined by change in Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12) overall summary score and rehospitalizations over 1 year. Multivariable regression models (least-squares for change in KCCQ-12 and Fine-Gray cumulative incidence for rehospitalizations) were used to assess for association with caregiver burden., Results: Patients were 69.4 ± 5.5 years old, 85% men, and 90% White. Over the first year post-LVAD implantation, there was a 32% cumulative probability of rehospitalization; 72% (43/60) of patients had an improvement of ≥5 points in KCCQ-12 scores. Caregivers were 61.2 ± 11.5 years old, 93% women, 81% White, and 85% married. Median Oberst Caregiving Burden Scale Difficulty and Time scores at baseline were 1.13 and 2.27, respectively. Higher caregiver burden was not significantly associated with hospitalizations or change in patient health-related quality of life during the first year post-LVAD implantation., Conclusions: Higher caregiver burden at baseline was not associated with patient recovery in the first year after LVAD implantation. Understanding the associations between caregiver burden and patient outcomes after LVAD implantation is important as excessive caregiver burden is a relative contraindication for LVAD implantation., Competing Interests: Dr Spertus reports that, relevant to this work, he serves as a consultant for Novartis and owns the copyright to the Kansas City Cardiomyopathy Questionnaire. He also serves as a consultant for Bayer, AstraZeneca, Myokardia, Merck, Amgen, United Healthcare, and Janssen. He has equity in Health Outcomes Sciences and serves on the Board of Directors for Blue Cross-Blue Shield of Kansas City. Dr Grady serves as a consultant to Amgen. The other authors have no conflicts of interest to disclose., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)
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- 2023
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26. Reproductive Health of Women with Congenital Heart Defects.
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Farr SL, Downing KF, Tepper NK, Oster ME, Glidewell MJ, and Reefhuis J
- Subjects
- Adolescent, Female, Humans, Pregnancy, Contraception, Preconception Care, Heart Defects, Congenital, Reproductive Health
- Abstract
This report provides an overview of the unique reproductive health issues facing women with congenital heart defects (CHDs) and of the clinical care and professional guidelines on contraception, preconception care, and pregnancy for this population. It describes Centers for Disease Control and Prevention (CDC) activities related to surveillance of reproductive health issues among females with CHDs. It also describes CDC's work bringing awareness to physicians who provide care to adolescents and women with CHDs, including obstetrician/gynecologists, about the need for lifelong cardiology care for their patients with CHDs.
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- 2023
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27. Examining Geographic Variation of Opioid Use Disorder Encounters in the USA.
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Liu Y, Sahil S, Farr SL, and Hagle HN
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- Humans, United States epidemiology, Adolescent, Patient Discharge, Emergency Service, Hospital, Logistic Models, Analgesics, Opioid therapeutic use, Opioid-Related Disorders epidemiology, Opioid-Related Disorders drug therapy
- Abstract
Objectives: The objectives were (1) to characterize patient encounters of opioid use disorder (OUD) using Health Facts
® database; and (2) to identify geographic variation, patient characteristics, and facility characteristics impacting patients' reduced OUD encounters over time., Methods: Patient encounters were included if the patient (1) was 18 years old or greater; (2) had an index encounter; (3) survived at least 30 days after the discharge. The OUD encounter was based on ICD-10 codes. The date at which a patient first had an OUD encounter was the index date. For the first objective, OUD encounters were described according to patient characteristics, facility characteristics, and geographic variation. Patient characteristics were age, gender, marital status, race, health insurance coverage, discharge disposition, and patient type. Facility characteristics were care setting, medical specialty, census region, census division, urban vs. rural, acute vs. non-acute, and teaching hospital status. For the second objective, patients were examined 1 year prior to through 1 year after the index date. A logistic regression was used to determine the likelihood of reduced OUD encounters over time, conditional upon geographic variation, patient characteristics, and facility characteristics., Results: A total of 265,643 OUD encounters were identified. East South Central was associated with the highest population-based rate of OUD among nine census divisions. In the logistic regression (n = 10,762), discharged to home, outpatient, emergency room, psychiatry, East North Central, West North Central, and urban areas were significant positive predictors for reduced OUD encounters over time, whereas age and Mountain were significant negative predictors., Conclusions: East South Central was associated with the highest population-based rate of OUD. Compared with East South Central, East North Central and West North Central had a significantly positive impact on fewer encounters of OUD over time., (© 2022. The Author(s), under exclusive licence to Springer Healthcare Ltd., part of Springer Nature.)- Published
- 2022
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28. Envisioning the Evolution of Learning Healthcare Systems to a Learning Healthcare Community.
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Farr SL and Spertus JA
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- Humans, Delivery of Health Care, Learning, Learning Health System
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- 2022
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29. Preterm birth among pregnant persons with severe acute respiratory syndrome Coronavirus 2 infection.
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Newton SM, Reeves EL, O'Malley Olsen E, Woodworth KR, Farr SL, Galang RR, Reynolds MR, Harvey E, Shi J, Nestoridi E, Barton J, Ngo VP, Lush M, Longcore ND, Dzimira P, Im LK, Sokale A, Siebman S, Delgado López C, Chen T, Mobley EL, Khuwaja S, Romitti PA, Fredette C, Ellis EM, Silcox K, Hall AJ, Azziz-Baumgartner E, Gilboa SM, Shapiro-Mendoza CK, and Tong VT
- Subjects
- Female, Humans, Infant, Newborn, Pregnancy, Pregnancy Outcome, SARS-CoV-2, United States epidemiology, COVID-19, Pregnancy Complications, Infectious epidemiology, Premature Birth epidemiology
- Abstract
Objective: We examined the relationship between trimester of SARS-CoV-2 infection, illness severity, and risk for preterm birth., Study Design: We analyzed data for 6336 pregnant persons with SARS-CoV-2 infection in 2020 in the United States. Risk ratios for preterm birth were calculated for illness severity, trimester of infection, and illness severity stratified by trimester of infection adjusted for age, selected underlying medical conditions, and pregnancy complications., Result: Pregnant persons with critical COVID-19 or asymptomatic infection, compared to mild COVID-19, in the second or third trimester were at increased risk of preterm birth. Pregnant persons with moderate-to-severe COVID-19 did not show increased risk of preterm birth in any trimester., Conclusion: Critical COVID-19 in the second or third trimester was associated with increased risk of preterm birth. This finding can be used to guide prevention strategies, including vaccination, and inform clinical practices for pregnant persons., (© 2022. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)
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- 2022
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30. The Influence of Health Behavior Theory on Implementation Practice and Science: Brief Review and Commentary.
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Sales AE, Farr SL, and Spertus JA
- Abstract
As research defines new treatments and policies to improve the health of patients, an increasing challenge has been to translate these insights into routine clinical practice to benefit patients and society. An important exploration is how theories of human behavior change fit into the science of implementation and quality improvement. In this paper, we begin with a brief review of the intellectual roots of implementation science and quality improvement, followed by a discussion of how theories and principles of behavior change can inform both goals and challenges in using behavior change theories. The insights offered through health behavior change theory have led to changes in how we plan for implementation and select, develop, design and tailor implementation interventions and strategies. While the degree to which organizational and external contexts influence the behavior of providers in these organizations varies widely, some degree of context external to the individual is important and needs adequate consideration. In short, health behavior change theory is essential but not sufficient to integrate in most implementation efforts, where priority must be given to both individual factors and contexts in which individuals operate.
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- 2022
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31. How Well Do ICD-9-CM Codes Predict True Congenital Heart Defects? A Centers for Disease Control and Prevention-Based Multisite Validation Project.
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Rodriguez FH 3rd, Raskind-Hood CL, Hoffman T, Farr SL, Glidewell J, Li JS, D'Ottavio A, Botto L, Reeder MR, Hsu D, Lui GK, Sullivan AM, and Book WM
- Subjects
- Centers for Disease Control and Prevention, U.S., Databases, Factual, Humans, Middle Aged, Predictive Value of Tests, United States epidemiology, Heart Defects, Congenital diagnosis, Heart Defects, Congenital epidemiology, International Classification of Diseases
- Abstract
Background The Centers for Disease Control and Prevention's Surveillance of Congenital Heart Defects Across the Lifespan project uses large clinical and administrative databases at sites throughout the United States to understand population-based congenital heart defect (CHD) epidemiology and outcomes. These individual databases are also relied upon for accurate coding of CHD to estimate population prevalence. Methods and Results This validation project assessed a sample of 774 cases from 4 surveillance sites to determine the positive predictive value (PPV) for identifying a true CHD case and classifying CHD anatomic group accurately based on 57 International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes. Chi-square tests assessed differences in PPV by CHD severity and age. Overall, PPV was 76.36% (591/774 [95% CI, 73.20-79.31]) for all sites and all CHD-related ICD-9-CM codes. Of patients with a code for complex CHD, 89.85% (177/197 [95% CI, 84.76-93.69]) had CHD; corresponding PPV estimates were 86.73% (170/196 [95% CI, 81.17-91.15]) for shunt, 82.99% (161/194 [95% CI, 76.95-87.99]) for valve, and 44.39% (83/187 [95% CI, 84.76-93.69]) for "Other" CHD anatomic group ( X
2 =142.16, P <0.0001). ICD-9-CM codes had higher PPVs for having CHD in the 3 younger age groups compared with those >64 years of age, ( X2 =4.23, P <0.0001). Conclusions While CHD ICD-9-CM codes had acceptable PPV (86.54%) (508/587 [95% CI, 83.51-89.20]) for identifying whether a patient has CHD when excluding patients with ICD-9-CM codes for "Other" CHD and code 745.5, further evaluation and algorithm development may help inform and improve accurate identification of CHD in data sets across the CHD ICD-9-CM code groups.- Published
- 2022
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32. Early-onset dementia among privately-insured adults with and without congenital heart defects in the United States, 2015-2017.
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Downing KF, Oster ME, Olivari BS, and Farr SL
- Subjects
- Adult, Humans, Insurance, Health, Medicaid, United States epidemiology, Dementia diagnosis, Dementia epidemiology, Heart Defects, Congenital diagnosis, Heart Defects, Congenital epidemiology
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- 2022
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33. Critical Illness Among Patients Hospitalized With Acute COVID-19 With and Without Congenital Heart Defects.
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Downing KF, Simeone RM, Oster ME, and Farr SL
- Subjects
- Critical Illness, Hospitalization, Humans, COVID-19, Heart Defects, Congenital complications, Heart Defects, Congenital diagnosis, Heart Defects, Congenital epidemiology
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- 2022
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34. Preventive Dental Care and Oral Health of Children and Adolescents With and Without Heart Conditions - United States, 2016-2019.
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Downing KF, Espinoza L, Oster ME, and Farr SL
- Subjects
- Adolescent, Child, Child, Preschool, Female, Health Surveys, Humans, Infant, Male, United States epidemiology, Child Health, Dental Care, Heart Diseases epidemiology, Oral Health
- Abstract
Approximately 900,000 U.S. children have heart conditions, such as congenital heart disease (1). These children might be at increased risk for life-threatening infective endocarditis from oral bacteria in the bloodstream (2). Therefore, preventive dental care (i.e., check-ups, dental cleaning, radiographs, fluoride treatment, or sealant) to maintain oral health is important. Oral health status and receipt of preventive dental care were compared between children with heart conditions (2,928) and without (116,826) using population-based 2016-2019 National Survey of Children's Health (NSCH) data. Approximately 83% of children with and 80% without heart conditions received preventive dental care in the past year (p = 0.06). Children with heart conditions were more likely than were those without to have poor oral health (17.2% versus 13.7%; p = 0.02) and teeth in fair or poor condition (9.9% versus 5.3%; p<0.01). Among those with a heart condition, having low household income; an intellectual or developmental disability; and no well-child visit or medical home were associated with poor oral health. Receipt of preventive dental care was higher among children aged ≥6 years and those with insurance. Public health practitioners and health care providers can implement strategies (e.g., parent and patient education and collaboration between pediatricians, dentists, and cardiologists) to improve oral health and care among children with heart conditions, especially those with fewer resources and intellectual or developmental disabilities., Competing Interests: All authors have completed and submitted the International Committee of Medical Journal Editors form for disclosure of potential conflicts of interest. No potential conflicts of interest were disclosed.
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- 2022
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35. Post-traumatic stress disorder, anxiety, and depression among adults with congenital heart defects.
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Simeone RM, Downing KF, Bobo WV, Grosse SD, Khanna AD, and Farr SL
- Subjects
- Adolescent, Adult, Anxiety complications, Anxiety epidemiology, Anxiety Disorders complications, Anxiety Disorders epidemiology, Depression complications, Depression epidemiology, Female, Humans, Male, Middle Aged, Young Adult, Heart Defects, Congenital complications, Heart Defects, Congenital epidemiology, Stress Disorders, Post-Traumatic complications, Stress Disorders, Post-Traumatic diagnosis, Stress Disorders, Post-Traumatic epidemiology
- Abstract
Background: Due to invasive treatments and stressors related to heart health, adults with congenital heart defects (CHDs) may have an increased risk of post-traumatic stress disorder (PTSD), anxiety, and/or depressive disorders. Our objectives were to estimate the prevalence of these disorders among individuals with CHDs., Methods: Using IBM® MarketScan® Databases, we identified adults age 18-49 years with ≥2 outpatient anxiety/depressive disorder claims on separate dates or ≥1 inpatient anxiety/depressive disorder claim in 2017. CHDs were defined as ≥2 outpatient CHD claims ≥30 days apart or ≥1 inpatient CHD claim documented in 2007-2017. We used log-binomial regression to estimate adjusted prevalence ratios (aPR) and 95% confidence intervals (CI) for associations between CHDs and anxiety/depressive disorders., Results: Of 13,807 adults with CHDs, 12.4% were diagnosed with an anxiety or depressive disorder. Adults with CHDs, compared to the 5,408,094 without CHDs, had higher prevalence of PTSD (0.8% vs. 0.5%; aPR: 1.5 [CI: 1.2-1.8]), anxiety disorders (9.9% vs. 7.5%; aPR: 1.3 [CI: 1.3-1.4]), and depressive disorders (6.3% vs. 4.9%; aPR: 1.3 [CI: 1.2-1.4]). Among individuals with CHDs, female sex (aPR range: 1.6-3.3) and inpatient admission (aPR range 1.1-1.9) were associated with anxiety/depressive disorders., Conclusion: Over 1 in 8 adults with CHDs had diagnosed PTSD and/or other anxiety/depressive disorders, 30-50% higher than adults without CHDs. PTSD was rare, but three times more common in women with CHDs than men. Screening and referral for services for these conditions in people with CHDs may be beneficial., (© 2021 Wiley Periodicals LLC. This article has been contributed to by US Government employees and their work is in the public domain in the USA.)
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- 2022
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36. Prevention and awareness of birth defects across the lifespan using examples from congenital heart defects and spina bifida.
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Farr SL, Riley C, Van Zutphen AR, Brei TJ, Leedom VO, Kirby RS, and Pabst LJ
- Subjects
- Folic Acid, Humans, Longevity, Heart Defects, Congenital prevention & control, Spinal Dysraphism prevention & control
- Published
- 2022
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37. Advance Care Directives Among a Population-Based Sample of Young Adults with Congenital Heart Defects, CH STRONG, 2016-2019.
- Author
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Farr SL, Downing KF, Goudie A, Klewer SE, Andrews JG, and Oster ME
- Subjects
- Arkansas, Female, Humans, Odds Ratio, Surveys and Questionnaires, Young Adult, Advance Directives, Heart Defects, Congenital
- Abstract
Little is known about advance care planning among young adults with congenital heart defects (CHD). Congenital Heart Survey to Recognize Outcomes, Needs, and well-beinG (CH STRONG) participants were born with CHD between 1980 and 1997, identified using active, population-based birth defects surveillance systems in Arkansas, Arizona and Atlanta, and Georgia, and surveyed during 2016-2019. We estimated the percent having an advance care directive standardized to the site, year of birth, sex, maternal race, and CHD severity of the 9312 CH STRONG-eligible individuals. We calculated adjusted odds ratios (aOR) and 95% confidence intervals (CI) for characteristics associated with having advance care directives. Of 1541 respondents, 34.1% had severe CHD, 54.1% were female, and 69.6% were non-Hispanic white. After standardization, 7.3% had an advance care directive (range: 2.5% among non-Hispanic blacks to 17.4% among individuals with "poor" perceived health). Individuals with severe CHD (10.5%, aOR = 1.6, 95% CI: 1.1-2.3), with public insurance (13.1%, aOR = 1.7, 95% CI: 1.1-2.7), with non-cardiac congenital anomalies (11.1%, aOR = 1.9, 95% CI: 1.3-2.7), and who were hospitalized in the past year (13.3%, aOR = 1.8, 95% CI: 1.1-2.8) were more likely than their counterparts to have advance care directives. Individuals aged 19-24 years (6.6%, aOR = 0.4, 95% CI: 0.3-0.7) and 25-30 years (7.6%, aOR = 0.5, 95% CI: 0.3-0.8), compared to 31-38 years (14.3%), and non-Hispanic blacks (2.5%), compared to non-Hispanic whites (9.5%, aOR = 0.2, 95% CI: 0.1-0.6), were less likely to have advance care directives. Few young adults with CHD had advance care directives. Disparities in advance care planning may exist., (© 2021. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.)
- Published
- 2021
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38. Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being 2016-2019.
- Author
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Downing KF, Oster ME, Klewer SE, Rose CE, Nembhard WN, Andrews JG, and Farr SL
- Subjects
- Cognition, Female, Humans, Middle Aged, Quality of Life, Surveys and Questionnaires, Young Adult, Disabled Persons, Heart Defects, Congenital epidemiology, Heart Defects, Congenital therapy
- Abstract
Background Disabilities have implications for health, well-being, and health care, yet limited information is available on the percentage of adults with congenital heart defects (CHD) living with disabilities. We evaluated the prevalence of disability and associated characteristics among the 2016-2019 CH STRONG (Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being) population-based sample of 19- to 38-year-olds with CHD from 3 US locations. Methods and Results Prevalence of disability types (hearing, vision, cognition, mobility, self-care, living independently) were compared with similarly aged adults from the general population as estimated by the American Community Survey and standardized to the CH STRONG eligible population to reduce nonresponse bias and confounding. Health-related quality of life (HRQOL) was measured via Patient-Reported Outcomes Measurement Information System Global Health Scale T-scores standardized to US 18- to 34-year-olds. Separate multivariable regression models assessed associations between disability and HRQOL. Of 1478 participants, 40% reported disabilities, with cognition most prevalent (29%). Of those reporting disability, 45% ever received disability benefits and 46% were unemployed. Prevalence of disability types were 5 to 8 times higher in adults with CHD than the general population. Those with ≥1 disability had greater odds of being female, and of having non-Hispanic Black maternal race and ethnicity, severe CHD, recent cardiac care, and noncardiac congenital anomalies. On average, adults with CHD and cognition, mobility, and self-care disabilities had impaired mental HRQOL and those with any disability type had impaired physical HRQOL. Conclusions Two of 5 adults with CHD may have disabilities, which are associated with impaired HRQOL. These results may inform healthcare needs and services for this growing population.
- Published
- 2021
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39. Individuals aged 1-64 years with documented congenital heart defects at healthcare encounters, five U.S. surveillance sites, 2011-2013.
- Author
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Jill Glidewell M, Farr SL, Book WM, Botto L, Li JS, Soim AS, Downing KF, Riehle-Colarusso T, D'Ottavio AA, Feldkamp ML, Khanna AD, Raskind-Hood CL, Sommerhalter KM, and Crume TL
- Subjects
- Adolescent, Adult, Age Distribution, Aged, Catchment Area, Health, Child, Child, Preschool, Colorado epidemiology, Georgia epidemiology, Heart Defects, Congenital ethnology, Heart Defects, Congenital therapy, Humans, Infant, International Classification of Diseases, Middle Aged, New York epidemiology, North Carolina epidemiology, Severity of Illness Index, Sex Distribution, Survivors statistics & numerical data, Utah epidemiology, Young Adult, Heart Defects, Congenital epidemiology, Medical Record Linkage, Population Surveillance
- Abstract
Background: Many individuals born with congenital heart defects (CHD) survive to adulthood. However, population estimates of CHD beyond early childhood are limited in the U.S., Objectives: To estimate the percentage of individuals aged 1-to-64 years at five U.S. sites with CHD documented at a healthcare encounter during a three-year period and describe their characteristics., Methods: Sites conducted population-based surveillance of CHD among 1 to 10-year-olds (three sites) and 11 to 64-year-olds (all five sites) by linking healthcare data. Eligible cases resided in the population catchment areas and had one or more healthcare encounters during the surveillance period (January 1, 2011-December 31, 2013) with a CHD-related ICD-9-CM code. Site-specific population census estimates from the same age groups and time period were used to assess percentage of individuals in the catchment area with a CHD-related ICD-9-CM code documented at a healthcare encounter (hereafter referred to as CHD cases). Severe and non-severe CHD were based on an established mutually exclusive anatomic hierarchy., Results: Among 42,646 CHD cases, 23.7% had severe CHD and 51.5% were male. Percentage of CHD cases among 1 to 10-year-olds, was 6.36/1,000 (range: 4.33-9.96/1,000) but varied by CHD severity [severe: 1.56/1,000 (range: 1.04-2.64/1,000); non-severe: 4.80/1,000 (range: 3.28-7.32/1,000)]. Percentage of cases across all sites in 11 to 64-year-olds was 1.47/1,000 (range: 1.02-2.18/1,000) and varied by CHD severity [severe: 0.34/1,000 (range: 0.26-0.49/1,000); non-severe: 1.13/1,000 (range: 0.76-1.69/1,000)]. Percentage of CHD cases decreased with age until 20 to 44 years and, for non-severe CHD only, increased slightly for ages 45 to 64 years., Conclusion: CHD cases varied by site, CHD severity, and age. These findings will inform planning for the needs of this growing population., (Published by Elsevier Inc.)
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- 2021
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40. Access to cardiac surgery centers for cardiac and non-cardiac hospitalizations in adolescents and adults with congenital heart defects- a descriptive case series study.
- Author
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Insaf TZ, Sommerhalter KM, Jaff TA, Farr SL, Downing KF, Zaidi AN, Lui GK, and Van Zutphen AR
- Subjects
- Adolescent, Adult, Female, Health Services Needs and Demand, Hospitalization statistics & numerical data, Humans, Male, New York epidemiology, Prevalence, Risk Adjustment organization & administration, Severity of Illness Index, Cardiac Surgical Procedures methods, Cardiac Surgical Procedures statistics & numerical data, Heart Defects, Congenital epidemiology, Heart Defects, Congenital therapy, Patient Acceptance of Health Care statistics & numerical data, Patient Care Management methods, Patient Care Management statistics & numerical data
- Abstract
Background: Individuals with congenital heart defects (CHDs) are recommended to receive all inpatient cardiac and noncardiac care at facilities that can offer specialized care. We describe geographic accessibility to such centers in New York State and determine several factors associated with receiving care there., Methods: We used inpatient hospitalization data from the Statewide Planning and Research Cooperative System (SPARCS) in New York State 2008-2013. In the absence of specific adult CHD care center designations during our study period, we identified pediatric/adult and adult-only cardiac surgery centers through the Cardiac Surgery Reporting System to estimate age-based specialized care. We calculated one-way drive and public transit time (in minutes) from residential address to centers using R gmapsdistance package and the Google Maps Distance Application Programming Interface (API). We calculated prevalence ratios using modified Poisson regression with model-based standard errors, fit with generalized estimating equations clustered at the hospital level and subclustered at the individual level., Results: Individuals with CHDs were more likely to seek care at pediatric/adult or adult-only cardiac surgery centers if they had severe CHDs, private health insurance, higher severity of illness at encounter, a surgical procedure, cardiac encounter, and shorter drive time. These findings can be used to increase care receipt (especially for noncardiac care) at pediatric/adult or adult-only cardiac surgery centers, identify areas with limited access, and reduce disparities in access to specialized care among this high-risk population., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)
- Published
- 2021
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41. Postpartum Depressive Symptoms and Screening Opportunities at Health Care Encounters.
- Author
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Haight SC, Ko JY, Yogman MW, and Farr SL
- Subjects
- Child, Delivery of Health Care, Female, Humans, Infant, Mass Screening, Postpartum Period, Pregnancy, Depression, Depression, Postpartum diagnosis, Depression, Postpartum epidemiology
- Abstract
Background: The American College of Obstetricians and Gynecologists recommends that providers screen women for depression at the postpartum checkup. If this checkup is the only screening opportunity, women who do not attend or whose depressive episode occurs at a different time may not be identified. We evaluated women's encounters with postpartum health care to identify screening opportunities for postpartum depressive symptoms (PDS). Materials and Methods: Pregnancy Risk Assessment Monitoring System (PRAMS) data for 2012-2015 from eight jurisdictions ( n = 23,990, representing 1,939,865 women) were used to calculate percentage of women reporting attendance at postpartum checkups, well-child visits, or postpartum home visitation, by presence of PDS. PDS were assessed using a modified two-item Patient Health Questionnaire. Using Modified Poisson regression, adjusted prevalence ratios (aPR) and confidence intervals (95% CI) were calculated to compare health services by PDS, adjusted for sociodemographic characteristics. Results: Almost all women with or without PDS attended a postpartum checkup (85.1% and 91.4%; aPR: 0.96; 95% CI: 0.93-0.99) and their infants attended a well-child visit (97.3% and 98.9%; aPR: 0.99; 95% CI: 0.98-1.00); 13.7% and 10.9% received home visitation (aPR: 1.18; 95% CI: 1.02-1.35). Of women with PDS who missed their postpartum checkup, 13.5% reported infant attendance at well-child visits, and 2.0% received home visitation. Of women with PDS, 98.8%, 86.1%, and 11.2% attended 1, 2, or 3 health services. Conclusion: A large percentage of women with PDS may attend well-child visits or receive home visitation, representing opportunities for depression screening and referral for care.
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- 2021
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42. Comorbidities Among Young Adults with Congenital Heart Defects: Results from the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG - Arizona, Arkansas, and Metropolitan Atlanta, 2016-2019.
- Author
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Oster ME, Riser AP, Andrews JG, Bolin EH, Galindo MK, Nembhard WN, Rose CE, and Farr SL
- Subjects
- Adult, Arizona epidemiology, Arkansas epidemiology, Cities epidemiology, Comorbidity, Female, Georgia epidemiology, Health Services Needs and Demand, Humans, Male, Outcome Assessment, Health Care, Quality of Life, Surveys and Questionnaires, Young Adult, Heart Defects, Congenital epidemiology
- Abstract
An estimated 1.4 million adults in the United States live with congenital heart defects (CHDs), yet their health outcomes are not well understood (1). Using self-reported, cross-sectional data from 1,482 respondents in the 2016-2019 Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) (2), CDC and academic partners estimated the prevalence of comorbidities among adults with CHDs aged 20-38 years born in Arizona (AZ), Arkansas (AR), and metropolitan Atlanta, Georgia (GA) compared with the general population (aged 20-38 years) from the National Health and Nutrition Examination Survey (NHANES) during 2015-2018 (3) and the AZ, AR, and GA Behavioral Risk Factor Surveillance Systems (BRFSS) during 2016-2018 (4). Adults with CHDs were more likely than those in the general population to report cardiovascular comorbidities, such as a history of congestive heart failure (4.3% versus 0.2%) and stroke (1.4% versus 0.3%), particularly those with severe CHDs (2). Adults with CHDs were more likely to report current depressive symptoms (15.1% versus 8.5%), but less likely to report previous diagnoses of depression (14.2% versus 22.6%), asthma (12.7% versus 16.9%), or rheumatologic disease (3.2% versus 8.0%). Prevalence of noncardiovascular comorbidities was similar between adults whose CHD was considered severe and those with nonsevere CHDs. Public health practitioners and clinicians can encourage young adults with CHDs to seek appropriate medical care to help them live as healthy a life as possible., Competing Interests: All authors have completed and submitted the International Committee of Medical Journal Editors form for disclosure of potential conflicts of interest. Wendy N. Nembhard reports grants from the March of Dimes during conduct of the study. No other potential conflicts of interest were disclosed.
- Published
- 2021
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43. Inpatient admissions and costs for adolescents and young adults with congenital heart defects in New York, 2009-2013.
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Hsu WH, Sommerhalter KM, McGarry CE, Farr SL, Downing KF, Lui GK, Zaidi AN, Hsu DT, and Van Zutphen AR
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- Adolescent, Adult, Child, Female, Hospitalization, Humans, Length of Stay, New York epidemiology, Young Adult, Heart Defects, Congenital epidemiology, Heart Defects, Congenital therapy, Inpatients
- Abstract
Objectives: Most individuals born with congenital heart defects (CHDs) survive to adulthood, but healthcare utilization patterns for adolescents and adults with CHDs have not been well described. We sought to characterize the healthcare utilization patterns and associated costs for adolescents and young adults with CHDs., Methods: We examined 2009-2013 New York State inpatient admissions of individuals ages 11-30 years with ≥1 CHD diagnosis codes recorded during any admission. We conducted multivariate linear regression using generalized estimating equations to examine associations between inpatient costs and sociodemographic and clinical variables., Results: We identified 5,100 unique individuals with 9,593 corresponding hospitalizations over the study period. Median inpatient cost and length of stay (LOS) were $10,720 and 3.0 days per admission, respectively; 55.1% were emergency admissions. Admission volume increased 48.7% from 2009 (1,538 admissions) to 2013 (2,287 admissions), while total inpatient costs increased 91.8% from 2009 ($27.2 million) to 2013 ($52.2 million). Inpatient admissions and costs rose more sharply over the study period for those with nonsevere CHDs compared to severe CHDs. Characteristics associated with higher costs were longer LOS, severe CHD, cardiac/vascular hospitalization classification, surgical procedures, greater severity of illness, and admission in New York City., Conclusion: This study provides an informative baseline of health care utilization patterns and associated costs among adolescents and young adults with CHDs in New York State. Structured transition programs may aid in keeping this population in appropriate cardiac care as they move to adulthood., (© 2020 Wiley Periodicals LLC.)
- Published
- 2021
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44. Preventive care and medical homes among US children with heart conditions.
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Broughton A, Riehle-Colarusso T, Nehl E, Riser AP, and Farr SL
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- Child, Health Personnel, Health Services Accessibility, Humans, Infant, Logistic Models, Prevalence, Socioeconomic Factors, United States epidemiology, Parents, Patient-Centered Care
- Abstract
Within a medical home, primary care providers can identify needs, provide services, and coordinate care for children with heart conditions. Using parent-reported data from the 2016-2017 National Survey of Children's Health, we examined receipt of preventive care in the last 12 months and having a medical home (care that is accessible, continuous, comprehensive, family-centred, coordinated, compassionate, and culturally effective) among US children aged 0-17 years with and without heart conditions. Using the marginal predictions approach to multivariable logistic regression, we examined associations between presence of a heart condition and receipt of preventive care and having a medical home. Among children with heart conditions, we evaluated associations between sociodemographic and health characteristics and receipt of preventive care and having a medical home. Of the 66,971 children included, 2.2% had heart conditions. Receipt of preventive care was reported for more children with heart conditions (91.0%) than without (82.7%) (adjusted prevalence ratio = 1.09, 95% confidence interval: 1.05-1.13). Less than half of children with heart conditions (48.2%) and without (49.5%) had a medical home (adjusted prevalence ratio = 1.02, 95% confidence interval: 0.91-1.14). For children with heart conditions, preventive care was slightly more common among younger children and less common among those with family incomes 200-399% of the federal poverty level. Having a medical home was less common among younger children, non-Hispanic "other" race, and those with ≥2 other health conditions. Most children with heart conditions received preventive care, but less than half had a medical home, with disparities by age, socioeconomic status, race, and concurrent health conditions. These findings highlight opportunities to improve care for children with heart conditions.
- Published
- 2021
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45. Zika Virus Disease in Colombia - Preliminary Report.
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Pacheco O, Beltrán M, Nelson CA, Valencia D, Tolosa N, Farr SL, Padilla AV, Tong VT, Cuevas EL, Espinosa-Bode A, Pardo L, Rico A, Reefhuis J, González M, Mercado M, Chaparro P, Martínez Duran M, Rao CY, Muñoz MM, Powers AM, Cuéllar C, Helfand R, Huguett C, Jamieson DJ, Honein MA, and Ospina Martínez ML
- Subjects
- Adolescent, Adult, Aged, Child, Child, Preschool, Colombia epidemiology, Female, Geography, Medical, Humans, Incidence, Infant, Infant, Newborn, Male, Microcephaly epidemiology, Middle Aged, Population Surveillance, Pregnancy, Pregnancy Complications, Infectious epidemiology, Pregnancy Trimester, Third, RNA, Viral blood, Reverse Transcriptase Polymerase Chain Reaction, Sex Distribution, Young Adult, Zika Virus genetics, Disease Outbreaks, Zika Virus isolation & purification, Zika Virus Infection epidemiology
- Abstract
Background: Colombia began official surveillance for Zika virus disease (ZVD) in August 2015. In October 2015, an outbreak of ZVD was declared after laboratory-confirmed disease was identified in nine patients., Methods: Using the national population-based surveillance system, we assessed patients with clinical symptoms of ZVD from August 9, 2015, to April 2, 2016. Laboratory test results and pregnancy outcomes were evaluated for a subgroup of pregnant women. Concurrently, we investigated reports of microcephaly for evidence of congenital ZVD., Results: By April 2, 2016, there were 65,726 cases of ZVD reported in Colombia, of which 2485 (4%) were confirmed by means of reverse-transcriptase-polymerase-chain-reaction (RT-PCR) assay. The overall reported incidence of ZVD among female patients was twice that in male patients. A total of 11,944 pregnant women with ZVD were reported in Colombia, with 1484 (12%) of these cases confirmed on RT-PCR assay. In a subgroup of 1850 pregnant women, more than 90% of women who were reportedly infected during the third trimester had given birth, and no infants with apparent abnormalities, including microcephaly, have been identified. A majority of the women who contracted ZVD in the first or second trimester were still pregnant at the time of this report. Among the cases of microcephaly investigated from January 2016 through April 2016, four patients had laboratory evidence of congenital ZVD; all were born to asymptomatic mothers who were not included in the ZVD surveillance system., Conclusions: Preliminary surveillance data in Colombia suggest that maternal infection with the Zika virus during the third trimester of pregnancy is not linked to structural abnormalities in the fetus. However, the monitoring of the effect of ZVD on pregnant women in Colombia is ongoing. (Funded by Colombian Instituto Nacional de Salud and the Centers for Disease Control and Prevention.)., (Copyright © 2016 Massachusetts Medical Society.)
- Published
- 2020
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46. Adverse Pregnancy Conditions Among Privately Insured Women With and Without Congenital Heart Defects.
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Downing KF, Tepper NK, Simeone RM, Ailes EC, Gurvitz M, Boulet SL, Honein MA, Howards PP, Valente AM, and Farr SL
- Subjects
- Adolescent, Adult, Cardiovascular Agents adverse effects, Databases, Factual, Drug Prescriptions, Echocardiography, Female, Heart Defects, Congenital diagnostic imaging, Heart Defects, Congenital drug therapy, Heart Defects, Congenital physiopathology, Humans, Pregnancy, Pregnancy Complications diagnostic imaging, Pregnancy Complications physiopathology, Pregnancy Outcome, Prevalence, Retrospective Studies, Risk Assessment, Risk Factors, Ultrasonography, Prenatal, United States epidemiology, Young Adult, Heart Defects, Congenital epidemiology, Insurance, Health, Pregnancy Complications epidemiology, Private Sector
- Abstract
Background In women with congenital heart defects (CHD), changes in blood volume, heart rate, respiration, and edema during pregnancy may lead to increased risk of adverse outcomes and conditions. The American Heart Association recommends providers of pregnant women with CHD assess cardiac health and discuss risks and benefits of cardiac-related medications. We described receipt of American Heart Association-recommended cardiac evaluations, filled potentially teratogenic or fetotoxic (Food and Drug Administration pregnancy category D/X) cardiac-related prescriptions, and adverse conditions among pregnant women with CHD compared with those without CHD. Methods and Results Using 2007 to 2014 US healthcare claims data, we ascertained a retrospective cohort of women with and without CHD aged 15 to 44 years with private insurance covering prescriptions during pregnancy. CHD was defined as ≥1 inpatient code or ≥2 outpatient CHD diagnosis codes >30 days apart documented outside of pregnancy and categorized as severe or nonsevere. Log-linear regression, accounting for multiple pregnancies per woman, generated adjusted prevalence ratios (aPRs) for associations between the presence/severity of CHD and stillbirth, preterm birth, and adverse conditions from the last menstrual period to 90 days postpartum. We identified 2056 women with CHD (2334 pregnancies) and 1 374 982 women without (1 524 077 pregnancies). During the last menstrual period to 90 days postpartum, 56% of women with CHD had comprehensive echocardiograms and, during pregnancy, 4% filled potentially teratogenic or fetotoxic cardiac-related prescriptions. Women with CHD, compared with those without, experienced more adverse conditions overall (aPR, 1.9 [95% CI, 1.7-2.1]) and, specifically, obstetric (aPR, 1.3 [95% CI, 1.2-1.4]) and cardiac conditions (aPR, 10.2 [95% CI, 9.1-11.4]), stillbirth (aPR, 1.6 [95% CI, 1.1-2.4]), and preterm delivery (aPR, 1.6 [95% CI, 1.4-1.8]). More women with severe CHD, compared with nonsevere, experienced adverse conditions overall (aPR, 1.5 [95% CI, 1.2-1.9]). Conclusions Women with CHD have elevated prevalence of adverse cardiac and obstetric conditions during pregnancy; 4 in 100 used potentially teratogenic or fetotoxic medications, and only half received an American Heart Association-recommended comprehensive echocardiogram.
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- 2020
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47. Contraceptive methods of privately insured US women with congenital heart defects.
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Anderson KN, Tepper NK, Downing K, Ailes EC, Abarbanell G, and Farr SL
- Subjects
- Adolescent, Adult, Female, Follow-Up Studies, Humans, Morbidity trends, Pregnancy, Prevalence, Retrospective Studies, Socioeconomic Factors, Surveys and Questionnaires, Survival Rate trends, United States epidemiology, Young Adult, Contraception methods, Contraception Behavior statistics & numerical data, Heart Defects, Congenital epidemiology, Pregnancy, Unplanned, Sexual Behavior statistics & numerical data
- Abstract
Background: The American Heart Association recommends women with congenital heart defects (CHD) receive contraceptive counseling early in their reproductive years, but little is known about contraceptive method use among women with CHD. We describe recent female sterilization and reversible prescription contraceptive method use by presence of CHD and CHD severity in 2014., Methods: Using IBM MarketScan Commercial Databases, we included women aged 15 to 44 years with prescription drug coverage in 2014 who were enrolled ≥11 months annually in employer-sponsored health plans between 2011 and 2014. CHD, CHD severity, contraceptive methods, and obstetrics-gynecology and cardiology provider encounters were identified using billing codes. We used log-binomial regression to calculate adjusted prevalence ratios (aPRs) and 95% confidence intervals (CIs) to compare contraceptive method use overall and by effectiveness tier by CHD presence and, for women with CHD, severity., Results: Recent sterilization or current reversible prescription contraceptive method use varied slightly among women with (39.2%) and without (37.3%) CHD, aPR = 1.04, 95% CI [1.01-1.07]. Women with CHD were more likely to use any Tier I method (12.9%) than women without CHD (9.3%), aPR = 1.41, 95% CI [1.33-1.50]. Women with severe, compared to non-severe, CHD were less likely to use any method, aPR = 0.85, 95% CI [0.78-0.92], or Tier I method, aPR = 0.84, 95% CI [0.70-0.99]. Approximately 60% of women with obstetrics-gynecology and <40% with cardiology encounters used any included method., Conclusions: There may be missed opportunities for providers to improve uptake of safe, effective contraceptive methods for women with CHD who wish to avoid pregnancy., (Published by Elsevier Inc.)
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- 2020
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48. Rationale and design of CH STRONG: Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG.
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Farr SL, Klewer SE, Nembhard WN, Alter C, Downing KF, Andrews JG, Collins RT, Glidewell J, Benavides A, Goudie A, Riehle-Colarusso T, Overman L, Riser AP, and Oster ME
- Subjects
- Adult, Comorbidity, Female, Humans, Male, Needs Assessment, Surveys and Questionnaires, United States, Young Adult, Educational Status, Health Services statistics & numerical data, Heart Defects, Congenital physiopathology, Heart Defects, Congenital psychology, Quality of Life
- Abstract
Studies of outcomes among adults with congenital heart defects (CHDs) have focused on those receiving cardiac care, limiting generalizability. The Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) will assess comorbidities, health care utilization, quality of life, and social and educational outcomes from a US population-based sample of young adults living with CHD., Methods: Individuals with CHD born between 1980 and 1997 were identified using active, population-based birth defects surveillance systems from 3 US locations (Arkansas [AR]; Arizona [AZ]; and Atlanta, Georgia [GA]) linked to death records. Individuals with current contact information responded to mailed survey materials during 2016 to 2019. Respondents and nonrespondents were compared using χ
2 tests., Results: Sites obtained contact information for 74.6% of the 9,312 eligible individuals alive at recruitment. Of those, 1,656 returned surveys, either online (18.1%) or via paper (81.9%), for a response rate of 23.9% (AR: 18.3%; AZ: 30.7%; Atlanta, GA: 28.0%; P value < .01). For 20.0% of respondents, a proxy completed the survey, with 63.9% reporting that the individual with CHD was mentally unable. Among respondents and nonrespondents, respectively, sex (female: 54.0% and 47.3%), maternal race/ethnicity (non-Hispanic white: 74.3% and 63.0%), CHD severity (severe: 33.8% and 27.9%), and noncardiac congenital anomalies (34.8% and 38.9%) differed significantly (P value < .01); birth year (1991-1997: 56.0% and 57.5%) and presence of Down syndrome (9.2% and 8.9%) did not differ., Conclusions: CH STRONG will provide the first multisite, population-based findings on long-term outcomes among the growing population of US adults with CHD., (Published by Elsevier Inc.)- Published
- 2020
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49. ADHD Medication Use During Pregnancy and Risk for Selected Birth Defects: National Birth Defects Prevention Study, 1998-2011.
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Anderson KN, Dutton AC, Broussard CS, Farr SL, Lind JN, Visser SN, Ailes EC, Shapira SK, Reefhuis J, and Tinker SC
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- Case-Control Studies, Female, Humans, Infant, Mothers, Odds Ratio, Pregnancy, Risk Factors, Attention Deficit Disorder with Hyperactivity drug therapy, Attention Deficit Disorder with Hyperactivity epidemiology, Gastroschisis
- Abstract
Objective: The objective of this study was to examine the prevalence of, and maternal characteristics associated with, ADHD medication use before and during pregnancy, and associations between early pregnancy ADHD medication use and risk for 12 selected birth defects. Method: We used data from the National Birth Defects Prevention Study (1998-2011), a U.S. population-based case-control study examining risk factors for major structural birth defects. Results: There was an increase in ADHD medication use from 1998-1999 (0.2%) to 2010-2011 (0.5%; p < .001). Early pregnancy ADHD medication use was more commonly reported by mothers of infants/fetuses with gastroschisis (crude odds ratio [cOR]: 2.9, 95% confidence interval [CI] = [1.2, 6.9]), omphalocele (cOR: 4.0, 95% CI = [1.2, 13.6]), and transverse limb deficiency (cOR: 3.3, 95% CI = [1.1, 9.6]). Conclusion: ADHD medication use before and during pregnancy was rare, but the prevalence of use has increased over time. In this analysis, early pregnancy ADHD medication use was associated with three of 12 selected birth defects.
- Published
- 2020
- Full Text
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50. Receipt of American Heart Association-Recommended Preconception Health Care Among Privately Insured Women With Congenital Heart Defects, 2007-2013.
- Author
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Farr SL, Downing KF, Ailes EC, Gurvitz M, Koontz G, Tran EL, Alverson CJ, and Oster ME
- Subjects
- Adolescent, Adult, American Heart Association, Blood Cell Count statistics & numerical data, Blood Chemical Analysis statistics & numerical data, Cardiology, Disease Management, Echocardiography statistics & numerical data, Electrocardiography statistics & numerical data, Exercise Test statistics & numerical data, Female, Heart Defects, Congenital diagnostic imaging, Heart Defects, Congenital drug therapy, Heart Defects, Congenital physiopathology, Humans, Implementation Science, Insurance, Health, Liver Function Tests statistics & numerical data, Obstetrics, Practice Guidelines as Topic, Pregnancy, Pregnancy Complications, Cardiovascular diagnostic imaging, Pregnancy Complications, Cardiovascular drug therapy, Pregnancy Complications, Cardiovascular physiopathology, Thyrotropin blood, United States, Young Adult, Cardiovascular Agents therapeutic use, Guideline Adherence statistics & numerical data, Heart Defects, Congenital therapy, Preconception Care standards, Pregnancy Complications, Cardiovascular therapy
- Abstract
Background Our objective was to estimate receipt of preconception health care among women with congenital heart defects (CHD), according to 2017 American Heart Association recommendations, as a baseline for evaluating recommendation implementation. Methods and Results Using 2007 to 2013 IBM MarketScan Commercial Databases, we identified women with CHD diagnosis codes ages 15 to 44 years who became pregnant and were enrolled in health insurance for ≥11 months in the year before estimated conception. We assessed documentation of complete blood count, electrolytes, thyroid-stimulating hormone, liver function, ECG, comprehensive echocardiogram, and exercise stress test, using procedural codes, and outpatient prescription claims for US Food and Drug Administration category D and X cardiac-related medications. Differences were examined according to CHD severity, age, region of residence, year of conception, and documented encounters at obstetric and cardiology practices. We found 2524 pregnancies among 2003 women with CHD (14.4% severe CHD). In the 98.3% of women with a healthcare encounter in the year before conception, <1% received all and 22.6% received no American Heart Association-recommended tests or assessments (range: 54.4% for complete blood count to 3.1% for exercise stress test). Women with the highest prevalence of receipt of recommended care were 35 to 44 years old, pregnant in 2012 to 2013, or had a documented obstetric or cardiology encounter in the year before conception ( P <0.05 for all). In 9.0% of pregnancies, ≥1 prescriptions for US Food and Drug Administration category D or X cardiac-related medications were filled in the year before conception. Conclusions A low percentage of women with CHD received American Heart Association-recommended preconception health care in the year before conception.
- Published
- 2019
- Full Text
- View/download PDF
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