Text Analysis of Trends in Health Equity and Disparities From the Internal Revenue Service Tax Documentation Submitted by US Nonprofit Hospitals Between 2010 and 2019: Exploratory Study.

BACKGROUND: Many US hospitals are classified as nonprofits and receive tax-exempt status partially in exchange for providing benefits to the community. Proof of compliance is collected with the Schedule H form submitted as part of the annual Internal Revenue Service Form 990 (F990H), including a free-response text section that is known for being ambiguous and difficult to audit. This research is among the first to use natural language processing approaches to evaluate this text section with a focus on health equity and disparities. OBJECTIVE: This study aims to determine the extent to which the free-response text in F990H reveals how nonprofit hospitals address health equity and disparities, including alignment with public priorities. METHODS: We used free-response text submitted by hospital reporting entities in Part V and VI of the Internal Revenue Service Form 990 Schedule H between 2010 and 2019. We identified 29 main themes connected to health equity and disparities, and 152 related key phrases. We tallied occurrences of these phrases through term frequency analysis, calculated the Moran I statistic to assess geographic variation in 2018, analyzed Google Trends use for the same terms during the same period, and used semantic search with Sentence-BERT in Python to understand contextual use. RESULTS: We found increased use from 2010 to 2019 across all the 29 phrase themes related to health equity and disparities. More than 90% of hospital reporting entities used terms in 2018 and 2019 related to affordability (2018: 2117/2131, 99.34%; 2019: 1620/1627, 99.57%), government organizations (2018: 2053/2131, 96.33%; 2019: 1577/1627, 96.93%), mental health (2018: 1937/2131, 90.9%; 2019: 1517/1627, 93.24%), and data collection (2018: 1947/2131, 91.37%; 2019: 1502/1627, 92.32%). The themes with the largest relative increase were LGBTQ (lesbian, gay, bisexual, transgender, and queer; 1676%; 2010: 12/2328, 0.51%; 2019: 149/1627, 9.16%) and social determinants of health (958%; 2010: 68/2328, 2.92%; 2019: 503/1627, 30.92%). Terms related to homelessness varied geographically from 2010 to 2018, and terms related to equity, health IT, immigration, LGBTQ, oral health, rural, social determinants of health, and substance use showed statistically significant (P<.05) geographic variation in 2018. The largest percentage point increase was for terms related to substance use (2010: 403/2328, 17.31%; 2019: 1149/1627, 70.62%). However, use in themes such as LGBTQ, disability, oral health, and race and ethnicity ranked lower than public interest in these topics, and some increased mentions of themes were to explicitly say that no action was taken. CONCLUSIONS: Hospital reporting entities demonstrate an increasing awareness of health equity and disparities in community benefit tax documentation, but these do not necessarily correspond with general population interests or additional action. We propose further investigation of alignment with community health needs assessments and make suggestions for improvements to F990H reporting requirements.

Long COVID risk and pre-COVID vaccination in an EHR-based cohort study from the RECOVER program.

Long COVID, or complications arising from COVID-19 weeks after infection, has become a central concern for public health experts. The United States National Institutes of Health founded the RECOVER initiative to better understand long COVID. We used electronic health records available through the National COVID Cohort Collaborative to characterize the association between SARS-CoV-2 vaccination and long COVID diagnosis. Among patients with a COVID-19 infection between August 1, 2021 and January 31, 2022, we defined two cohorts using distinct definitions of long COVID-a clinical diagnosis (n = 47,404) or a previously described computational phenotype (n = 198,514)-to compare unvaccinated individuals to those with a complete vaccine series prior to infection. Evidence of long COVID was monitored through June or July of 2022, depending on patients' data availability. We found that vaccination was consistently associated with lower odds and rates of long COVID clinical diagnosis and high-confidence computationally derived diagnosis after adjusting for sex, demographics, and medical history.

Risk of Neonatal Sepsis With Rescue Steroids in Preterm Premature Rupture of Membranes.

Objective To evaluate whether a rescue course of corticosteroids, when given at least 14 days after the initial course, is associated with an increased risk of neonatal sepsis after preterm premature rupture of membranes (PPROM). Methods We performed a retrospective, descriptive cohort study of women with singleton gestations from 23+0 to 34+0 weeks of gestation who received a rescue course of corticosteroids within the Indiana University Health Network from January 2009 through October 2016. Patients were separated into three groups based on amniotic membrane status at the time of each corticosteroid administration: Group 1 (intact membranes at initial/intact membranes at rescue), Group 2 (intact membranes at initial/PPROM at rescue), and Group 3 (PPROM at initial/PPROM at rescue). The primary outcome (neonatal sepsis) was compared between the groups. Patient characteristics and neonatal outcomes were analyzed with Fisher's exact test for categorical variables and ANOVA for continuous variables. Relative risk (RR) was calculated by comparing those with ruptured membranes to those with intact membranes at the time of rescue course administration. Results A total of 143 patients were eligible. Neonatal sepsis occurred in 6.8% of patients in Group 1, 21.1% of patients in Group 2, and 23.8% of patients in Group 3. Groups 2 and 3 had a statistically significant higher rate of neonatal sepsis than Group 1 (p = 0.021). The RR of neonatal sepsis after a rescue course in patients with PPROM (Groups 2 and 3) was 3.31 (95% CI = 1.32, 8.29) compared to those with intact membranes at the time of rescue course administration (Group 1). Conclusion A rescue course of corticosteroids in women with PPROM at the time of rescue administration was associated with an increased risk of neonatal sepsis. This increased risk was seen in women with intact membranes as well as ruptured membranes during their initial course of steroids. Larger studies are needed to further investigate this association.

Evaluating Policies to Decrease the Risk of Introducing SARS-CoV-2 Infections to Nursing Home Facilities.

We used an individual-based microsimulation model of North Carolina to determine what facility-level policies would result in the greatest reduction in the number of individuals with SARS-CoV-2 entering the nursing home environment from 12/15/2021 to 1/3/2022 (e.g., Omicron variant surge). On average, there were 14,287 (Credible Interval [CI]: 13,477-15,147) daily visitors and 17,168 (CI: 16,571-17,768) HCW coming from the community into 426 nursing home facilities. Policies requiring a negative rapid test or vaccinated status for visitors resulted in the greatest reduction in the number of individuals with SARS-CoV-2 infection entering the nursing home environment with a 29.6% (26.9%-32.0%) and 24.0% (CI: 22.2%-25.5%) reduction, respectively. Policies halving visits (21.2% [20.0%-28.2%]), requiring all vaccinated HCW to receive a booster (7.8% [CI: 7.4%-8.7%]), and limiting visitation to a primary visitor (6.5% [CI: 3.5%-9.7%]) reduced infectious contacts to a lesser degree.

SARS-CoV-2 Reinfection is Preceded by Unique Biomarkers and Related to Initial Infection Timing and Severity: an N3C RECOVER EHR-Based Cohort Study.

Although the COVID-19 pandemic has persisted for over 2 years, reinfections with SARS-CoV-2 are not well understood. We use the electronic health record (EHR)-based study cohort from the National COVID Cohort Collaborative (N3C) as part of the NIH Researching COVID to Enhance Recovery (RECOVER) Initiative to characterize reinfection, understand development of Long COVID after reinfection, and compare severity of reinfection with initial infection. We validate previous findings of reinfection incidence (5.9%), the occurrence of most reinfections during the Omicron epoch, and evidence of multiple reinfections. We present novel findings that Long COVID diagnoses occur closer to the index date for infection or reinfection in the Omicron BA epoch. We report lower albumin levels leading up to reinfection and a statistically significant association of severity between first infection and reinfection (chi-squared value: 9446.2, p-value: 0) with a medium effect size (Cramer's V: 0.18, DoF = 4).

Estimate of undetected severe acute respiratory coronavirus virus 2 (SARS-CoV-2) infection in acute-care hospital settings using an individual-based microsimulation model.

OBJECTIVE: Current guidance states that asymptomatic screening for severe acute respiratory coronavirus virus 2 (SARS-CoV-2) prior to admission to an acute-care setting is at the facility's discretion. This study's objective was to estimate the number of undetected cases of SARS-CoV-2 admitted as inpatients under 4 testing approaches and varying assumptions. DESIGN AND SETTING: Individual-based microsimulation of 104 North Carolina acute-care hospitals. PATIENTS: All simulated inpatient admissions to acute-care hospitals from December 15, 2021, to January 13, 2022 [ie, during the SARS-COV-2 ο (omicron) variant surge]. INTERVENTIONS: We simulated (1) only testing symptomatic patients, (2) 1-stage antigen testing with no confirmatory polymerase chain reaction (PCR) test, (3) 1-stage antigen testing with a confirmatory PCR for negative results, and (4) serial antigen screening (ie, repeat antigen test 2 days after a negative result). RESULTS: Over 1 month, there were 77,980 admissions: 13.7% for COVID-19, 4.3% with but not for COVID-19, and 82.0% for non-COVID-19 indications without current infection. Without asymptomatic screening, 1,089 (credible interval [CI], 946-1,253) total SARS-CoV-2 infections (7.72%) went undetected. With 1-stage antigen screening, 734 (CI, 638-845) asymptomatic infections (67.4%) were detected, with 1,277 false positives. With combined antigen and PCR screening, 1,007 (CI, 875-1,159) asymptomatic infections (92.5%) were detected, with 5,578 false positives. A serial antigen testing policy detected 973 (CI, 845-1,120) asymptomatic infections (89.4%), with 2,529 false positives. CONCLUSIONS: Serial antigen testing identified >85% of asymptomatic infections and resulted in fewer false positives with less cost per identified infection compared to combined antigen plus PCR testing.

Long COVID Risk and Pre-COVID Vaccination: An EHR-Based Cohort Study from the RECOVER Program.

Importance: Characterizing the effect of vaccination on long COVID allows for better healthcare recommendations. Objective: To determine if, and to what degree, vaccination prior to COVID-19 is associated with eventual long COVID onset, among those a documented COVID-19 infection. Design Settings and Participants: Retrospective cohort study of adults with evidence of COVID-19 between August 1, 2021 and January 31, 2022 based on electronic health records from eleven healthcare institutions taking part in the NIH Researching COVID to Enhance Recovery (RECOVER) Initiative, a project of the National Covid Cohort Collaborative (N3C). Exposures: Pre-COVID-19 receipt of a complete vaccine series versus no pre-COVID-19 vaccination. Main Outcomes and Measures: Two approaches to the identification of long COVID were used. In the clinical diagnosis cohort (n=47,752), ICD-10 diagnosis codes or evidence of a healthcare encounter at a long COVID clinic were used. In the model-based cohort (n=199,498), a computable phenotype was used. The association between pre-COVID vaccination and long COVID was estimated using IPTW-adjusted logistic regression and Cox proportional hazards. Results: In both cohorts, when adjusting for demographics and medical history, pre-COVID vaccination was associated with a reduced risk of long COVID (clinic-based cohort: HR, 0.66; 95% CI, 0.55-0.80; OR, 0.69; 95% CI, 0.59-0.82; model-based cohort: HR, 0.62; 95% CI, 0.56-0.69; OR, 0.70; 95% CI, 0.65-0.75). Conclusions and Relevance: Long COVID has become a central concern for public health experts. Prior studies have considered the effect of vaccination on the prevalence of future long COVID symptoms, but ours is the first to thoroughly characterize the association between vaccination and clinically diagnosed or computationally derived long COVID. Our results bolster the growing consensus that vaccines retain protective effects against long COVID even in breakthrough infections. Key Points: Question: Does vaccination prior to COVID-19 onset change the risk of long COVID diagnosis?Findings: Four observational analyses of EHRs showed a statistically significant reduction in long COVID risk associated with pre-COVID vaccination (first cohort: HR, 0.66; 95% CI, 0.55-0.80; OR, 0.69; 95% CI, 0.59-0.82; second cohort: HR, 0.62; 95% CI, 0.56-0.69; OR, 0.70; 95% CI, 0.65-0.75).Meaning: Vaccination prior to COVID onset has a protective association with long COVID even in the case of breakthrough infections.

Enhancing the prediction of hospitalization from a COVID-19 agent-based model: A Bayesian method for model parameter estimation.

Agent-based models (ABMs) have become a common tool for estimating demand for hospital beds during the COVID-19 pandemic. A key parameter in these ABMs is the probability of hospitalization for agents with COVID-19. Many published COVID-19 ABMs use either single point or age-specific estimates of the probability of hospitalization for agents with COVID-19, omitting key factors: comorbidities and testing status (i.e., received vs. did not receive COVID-19 test). These omissions can inhibit interpretability, particularly by stakeholders seeking to use an ABM for transparent decision-making. We introduce a straightforward yet novel application of Bayes' theorem with inputs from aggregated hospital data to better incorporate these factors in an ABM. We update input parameters for a North Carolina COVID-19 ABM using this approach, demonstrate sensitivity to input data selections, and highlight the enhanced interpretability and accuracy of the method and the predictions. We propose that even in tumultuous scenarios with limited information like the early months of the COVID-19 pandemic, straightforward approaches like this one with discrete, attainable inputs can improve ABMs to better support stakeholders.

Incorporation of near-real-time hospital occupancy data to improve hospitalization forecast accuracy during the COVID-19 pandemic.

Public health decision makers rely on hospitalization forecasts to inform COVID-19 pandemic planning and resource allocation. Hospitalization forecasts are most relevant when they are accurate, made available quickly, and updated frequently. We rapidly adapted an agent-based model (ABM) to provide weekly 30-day hospitalization forecasts (i.e., demand for intensive care unit [ICU] beds and non-ICU beds) by state and region in North Carolina for public health decision makers. The ABM was based on a synthetic population of North Carolina residents and included movement of agents (i.e., patients) among North Carolina hospitals, nursing homes, and the community. We assigned SARS-CoV-2 infection to agents using county-level compartmental models and determined agents' COVID-19 severity and probability of hospitalization using synthetic population characteristics (e.g., age, comorbidities). We generated weekly 30-day hospitalization forecasts during May-December 2020 and evaluated the impact of major model updates on statewide forecast accuracy under a SARS-CoV-2 effective reproduction number range of 1.0-1.2. Of the 21 forecasts included in the assessment, the average mean absolute percentage error (MAPE) was 7.8% for non-ICU beds and 23.6% for ICU beds. Among the major model updates, integration of near-real-time hospital occupancy data into the model had the largest impact on improving forecast accuracy, reducing the average MAPE for non-ICU beds from 6.6% to 3.9% and for ICU beds from 33.4% to 6.5%. Our results suggest that future pandemic hospitalization forecasting efforts should prioritize early inclusion of hospital occupancy data to maximize accuracy.

Lessons learned from the rapid development of a statewide simulation model for predicting COVID-19's impact on healthcare resources and capacity.

The first case of COVID-19 was detected in North Carolina (NC) on March 3, 2020. By the end of April, the number of confirmed cases had soared to over 10,000. NC health systems faced intense strain to support surging intensive care unit admissions and avert hospital capacity and resource saturation. Forecasting techniques can be used to provide public health decision makers with reliable data needed to better prepare for and respond to public health crises. Hospitalization forecasts in particular play an important role in informing pandemic planning and resource allocation. These forecasts are only relevant, however, when they are accurate, made available quickly, and updated frequently. To support the pressing need for reliable COVID-19 data, RTI adapted a previously developed geospatially explicit healthcare facility network model to predict COVID-19's impact on healthcare resources and capacity in NC. The model adaptation was an iterative process requiring constant evolution to meet stakeholder needs and inform epidemic progression in NC. Here we describe key steps taken, challenges faced, and lessons learned from adapting and implementing our COVID-19 model and coordinating with university, state, and federal partners to combat the COVID-19 epidemic in NC.

Machine Learning for Medical Coding in Healthcare Surveys.

Objectives Medical coding, or the translation of healthcare information into numeric codes, is expensive and time intensive. This exploratory study evaluates the use of machine learning classifiers to perform automated medical coding for large statistical healthcare surveys.

Multimodal Pain Management for Cesarean Delivery: A Double-Blinded, Placebo-Controlled, Randomized Clinical Trial.

OBJECTIVE: Our objective was to evaluate the efficacy of perioperative multimodal pain management in reducing opioid use after elective cesarean delivery (CD). STUDY DESIGN: A single-center, double-blinded, placebo-controlled randomized trial of women undergoing elective CD. Participants were allocated 1:1 to receive the multimodal protocol or matching placebos. The multimodal protocol consisted of a preoperative dose of intravenous acetaminophen, preincision injection of subcutaneous bupivacaine, and intraoperative injection of intramuscular ketorolac. Primary outcome was total opioid intake at 48 hours postoperatively. Secondary outcomes were pain scores, time to first opioid intake, neonatal outcomes, and total outpatient opioid intake on postoperative day (POD) 7. Data were analyzed using parametric and nonparametric tests and quantile regression as appropriate. RESULTS: A total of 242 women were screened with 120 randomized, 60 to the multimodal group and 60 to control group. There was no significant difference in the primary outcome of opioid use nor in the secondary outcomes. Smokers and patients with a history of drug use had higher median postoperative opiate use and earlier administration. On POD 7, only 40% of prescribed opioids had been used, and there was no difference between the groups. CONCLUSION: This perioperative multimodal pain regimen did not reduce opioid use in 48 hours after CD. Patients who smoke or with a history of drug use required more opioids in the postoperative period. Providers significantly overprescribed opioids after CD.

Maternal obesity is associated with chorioamnionitis and earlier indicated preterm delivery among expectantly managed women with preterm premature rupture of membranes.

OBJECTIVE: To determine the association between maternal obesity and delivery due to chorioamnionitis prior to labor onset, among expectantly managed women with preterm premature rupture of membranes (pPROM). METHODS: This was a secondary analysis of a multicenter randomized trial of magnesium sulfate versus placebo to prevent cerebral palsy or death among offspring of women with anticipated delivery at 24-31-week gestation. After univariable analysis, Cox proportional hazard evaluated the association between maternal obesity and chorioamnionitis, while Laplace regression investigated how obesity affects the gestational age at delivery of the first 20% of women developing the outcome of interest. RESULTS: A total of 164 of the 1942 women with pPROM developed chorioamnionitis prior to labor onset. Obese women had a 60% increased hazard of developing such complication (adjusted HR 1.6, 95%CI 1.1-2.1, p = .008), prompting delivery 1.5 weeks earlier, as the 20th survival percentile was 27.2-week gestation (95%CI 26-28.6) among obese as opposed to 28.8 weeks (95%CI 27.4-30.1) (p = .002) among nonobese women. CONCLUSIONS: Maternal obesity is a risk factor for chorioamnionitis prior to labor onset. Future studies will determine if obesity is important enough to change the management of latency after pPROM according to maternal BMI.

Amnion epithelial cell-derived exosomes induce inflammatory changes in uterine cells.

BACKGROUND: Fetal endocrine signals are generally considered to contribute to the timing of birth and the initiation of labor. Fetal tissues under oxidative stress release inflammatory mediators that lead to sterile inflammation within the maternal-fetal interface. Importantly, these inflammatory mediators are packaged into exosomes, bioactive cell-derived extra cellular vesicles that function as vectors and transport them from the fetal side to the uterine tissues where they deposit their cargo into target cells enhancing uterine inflammatory load. This exosome-mediated signaling is a novel mechanism for fetal-maternal communication. OBJECTIVE: This report tested the hypothesis that oxidative stress can induce fetal amnion cells to produce exosomes, which function as a paracrine intermediary between the fetus and mother and biochemically signal readiness for parturition. STUDY DESIGN: Primary amnion epithelial cells were grown in normal cell culture (control) or exposed to oxidative stress conditions (induced by cigarette smoke extract). Exosomes were isolated from cell supernatant by sequential ultracentrifugation. Exosomes were quantified and characterized based on size, shape, and biochemical markers. Myometrial, decidual, and placental cells (BeWo) were treated with 2 × 105, 2 × 107, and 2 × 109 control or oxidative stress-derived amnion epithelial cell exosomes for 24 hours. Entry of amnion epithelial cell exosomes into cells was confirmed by confocal microscopy of fluorescent-labeled exosomes. The effect of amnion epithelial cell exosomes on target cell inflammatory status was determined by measuring production of interleukin-6, interleukin-8, interleukin-1ß, tumor necrosis factor-α, and prostaglandin E2 by enzyme-linked immunosorbent assay and inflammatory gene transcription factor (nuclear factor-κß) activation status by immunoblotting for phosphorylated RelA/p65. Localization of NANOG in term human myometrium and decidua obtained from women before labor and during labor was performed using immunohistochemistry. Data were analyzed by Wilcoxon-Mann-Whitney test to compare effects of exosomes from control and oxidative stress-treated amnion epithelial cells on inflammatory status of target cells. RESULTS: Amnion epithelial cells released ∼125 nm, cup-shaped exosomes with ∼899 and 1211 exosomes released per cell from control and oxidative stress-induced cells, respectively. Amnion epithelial cell exosomes were detected in each target cell type after treatment using confocal microscopy. Treatment with amnion epithelial cell exosomes increased secretion of interleukin-6, interleukin-8, and PGE2 and activation of NF-κß (each P < .05) in myometrial and decidual cells. Exosome treatments had no effect on interleukin-6 and PGE2 production in BeWo cells. NANOG staining was higher in term labor myometrium and decidua compared to tissues not in labor. CONCLUSION: In vitro, amnion epithelial cell exosomes lead to an increased inflammatory response in maternal uterine cells whereas placental cells showed refractoriness. Fetal cell exosomes may function to signal parturition by increasing maternal gestational cell inflammation.

Gestational tissue inflammatory biomarkers at term labor: A systematic review of literature.

Parturition at term is characterized by inflammatory overload in both feto-maternal tissues. Despite the large number of individual studies on changes in inflammatory biomarkers linked to labor, a comprehensive profile of them in each of the uterine compartments is not available to better understand their mechanistic contributions to labor. This systematic review investigated the pro- and anti-inflammatory biomarkers reported in intra-uterine tissues (amnion, chorion, decidua, placenta, and myometrium) at term labor. We conducted a systematic review of studies on pro- and anti-inflammatory biomarkers (mRNA and/or protein) reported in feto-maternal tissues during normal human term labor, published in English (1980-2016), in 3 electronic data bases. From a total of 3712 citations, 172 were included for final review. Each tissue expresses a unique set of biomarkers at the time of term labor, but there is significant overlap between tissues. All tissues had IL-6, IL-8, IL-1ß, COX-2, PGE-2, TNF-α, and hCAP18 in common at term labor. Common and unique inflammatory biomarkers are expressed in various feto-maternal compartments at term labor. Increase in pro-inflammatory markers in all gestational tissue signifies their harmonious functional role in promoting labor. Anti-inflammatory markers at term labor are hardly reported.

Differences in Women Who Choose Subdermal Implants Versus Intrauterine Devices.

Objective: To determine if there are any differences in the patient populations that choose subdermal implants versus intrauterine devices (IUDs) for contraceptive purposes. Study Design: Retrospective chart review. Electronic medical records of women who presented to the University of Texas Medical Branch in Galveston's Regional Maternal Child Health Program Clinics in southeast Texas from March 2011 to March 2013 and received a subdermal implant or IUD were reviewed. Differences in characteristics of women who chose either form of contraception were determined. Results: A total of 356 charts were reviewed. Of those, 188 (53%) women chose the subdermal implant and 168 (47%) chose an IUD. Patients who chose subdermal implants were more likely to have had a long-acting reversible contraceptive (LARC) method previously (p<0.01), previous vaginal deliveries (p<0.001), and an interval from delivery to LARC placement of >1 year (p<0.001). LARC choice was race-specific in that, when compared to Caucasian women, African-American women were significantly more likely to choose an IUD, while Hispanic women were significantly more likely to choose subdermal implants (p=0.002). Conclusion: Different populations choose subdermal implants versus IUDs for contraception. Further research is needed to determine etiologies for these differences.

Health care professionals' views of sharing information with families who have a child with a genetic condition.

The purpose of this study was to examine health care professionals' views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals' semi-structured interviews. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research.

Parents' perspectives on having their children interviewed for research.

We describe parents' perspectives on research interviews with their children with single gene conditions. One hundred forty-two parents were interviewed between 2002 and 2003 in a larger study using a qualitative descriptive design. Two questions from the semi-structured interview guide were used to identify parents' perspectives about future interviews. Almost all of the parents said they would allow an interview with their children, but some parents specified stipulations. These stipulations included: focusing on age-appropriate information, limiting information with child, considering input from parents, and providing a child-oriented environment. Knowing this information, researchers can prepare to work more collaboratively with parents and include them more fully in the research process.

Parents' concerns about issues related to their children's genetic conditions.

PURPOSE: The purpose of this analysis was to examine parents' (N = 142) concerns about issues (i.e., privacy of information, insurance, healthcare costs, employment, school) related to their children's genetic conditions. DESIGN AND METHODS: Using a series of matrices, thematic analysis was conducted focusing on parents' concerns. RESULTS: Parents were less concerned with privacy and more concerned with insurance, healthcare costs, employment, and school issues. PRACTICE IMPLICATIONS: Nurses and other healthcare professionals need to give parents the opportunity to discuss their concerns and to assist parents with strategies and resources to meet the needs of their children and families.

Parents sharing information with their children about genetic conditions.

INTRODUCTION: Nurses are in an ideal situation to help families share information with their children about genetic conditions. While many factors contribute to this decision making, little is known about how parents decide when and how to convey this information to their children. The purpose of this qualitative analysis was to examine parents' beliefs and strategies related to sharing information about a genetic condition with their affected and unaffected children. METHOD: One hundred thirty-nine parents participated in this study. Narrative analysis and fundamental qualitative description were employed to identify approaches and strategies that parents used to share information with their children. RESULTS: Parents' information sharing approaches and strategies were grounded in the goal of promoting the child's adaptation to the genetic condition. Parents shared information based on their assessment of the child's developmental readiness and interest and described information sharing as an unfolding process that continued throughout childhood. DISCUSSION: The approaches and strategies contribute to understanding the processes associated with information sharing between parents and their children and between health care professionals and parents.