A framework for measuring the cost to families of caring for children's health: the design, methodology, and study population of the r-Kids study.

BACKGROUND: All families experience financial and time costs related to caring for their children's health. Understanding the economic burden faced by families of children with chronic health conditions (CHC) is crucial for designing effective policies to support families. METHODS: In this prospective study we used electronic health records to identify children between 3 and 17 years old with autism spectrum disorder (ASD), asthma, or neither (control) from three Kaiser Permanente regions and several community health centers in the OCHIN network. We oversampled children from racial and ethnic minority groups. Parent/guardian respondents completed surveys three times, approximately four months apart. The surveys included the Family Economic Impact Inventory (measuring financial, time, and employment costs of caring for a child's health), and standardized measures of children's quality of life, behavioral problems, and symptom severity for children with ASD or asthma. We also assessed parenting stress and parent physical and mental health. All materials were provided in English and Spanish. RESULTS: Of the 1,461 families that enrolled (564 ASD, 468 asthma, 429 control), children were predominantly male (79%), with a mean age of 9.0 years, and racially and ethnically diverse (43% non-Hispanic white; 22% Hispanic; 35% Asian, Black, Native Hawaiian, or another race/ethnicity). The majority of survey respondents were female (86%), had a college degree (62%), and were married/partnered (79%). ASD group respondents were less likely to be employed (73%) than those in the asthma or control groups (both 80%; p = .023). Only 32% of the control group reported a household income ≤ $4,000/month compared with 41% of asthma and 38% of ASD families (p = .006). CONCLUSIONS: Utilizing a novel measure assessing family economic burden, we successfully collected survey responses from a large and diverse sample of families. Drawing upon the conceptual framework, survey measures, and self-report data described herein we will conduct future analyses to examine the economic burdens related to CHC and the incremental differences in these burdens between health groups. This information will help policy makers to design more equitable health and social policies that could reduce the burden on families.

Incidence of SARS-CoV-2 Infection, Emergency Department Visits, and Hospitalizations Because of COVID-19 Among Persons Aged ≥12 Years, by COVID-19 Vaccination Status - Oregon and Washington, July 4-September 25, 2021.

Population-based rates of infection with SARS-CoV-2 (the virus that causes COVID-19) and related health care utilization help determine estimates of COVID-19 vaccine effectiveness and averted illnesses, especially since the SARS-CoV-2 B.1.617.2 (Delta) variant began circulating in June 2021. Among members aged ≥12 years of a large integrated health care delivery system in Oregon and Washington, incidence of laboratory-confirmed SARS-CoV-2 infection, emergency department (ED) visits, and hospitalizations were calculated by COVID-19 vaccination status, vaccine product, age, race, and ethnicity. Infection after full vaccination was defined as a positive SARS-CoV-2 molecular test result ≥14 days after completion of an authorized COVID-19 vaccination series.* During the July-September 2021 surveillance period, SARS-CoV-2 infection occurred among 4,146 of 137,616 unvaccinated persons (30.1 per 1,000 persons) and 3,009 of 344,848 fully vaccinated persons (8.7 per 1,000). Incidence was higher among unvaccinated persons than among vaccinated persons across all demographic strata. Unvaccinated persons with SARS-CoV-2 infection were more than twice as likely to receive ED care (18.5%) or to be hospitalized (9.0%) than were vaccinated persons with COVID-19 (8.1% and 3.9%, respectively). The crude mortality rate was also higher among unvaccinated patients (0.43 per 1,000) than in fully vaccinated patients (0.06 per 1,000). These data support CDC recommendations for COVID-19 vaccination, including additional and booster doses, to protect individual persons and communities against COVID-19, including illness and hospitalization caused by the Delta variant (1).

Care trajectories for patients utilizing electronic visits for COVID-like symptoms in a large healthcare delivery system: May 2020-December 2021.

BACKGROUND: There is limited information about how on-line screening tools developed by integrated systems facilitated management of COVID-like illness patients. METHODS: Using the Kaiser Permanente Northwest (KPNW) Electronic Health Record, we identified adult plan members who accessed online COVID-19 screening e-visits and enumerated their subsequent medical encounters, tests for SARS-CoV-2, and test outcomes. RESULTS: Between May 2020 and December 2021, members completed 55,139 e-visits, with disproportionate representation among females (65% vs. 53% in the overall membership) and members aged <45 years (61% vs. 39%). Thirty percent of patients (16,953) were managed entirely through e-visits and 70% received subsequent in-person care. The percent of SARS-CoV-2 positive individuals was highest among the 1055 individuals triaged to inpatient care (17.9%), compared to 9.5% among those escalated to additional ambulatory care. CONCLUSIONS: The e-visit on-line screening tool helped KPNW assist thousands of patients with COVID-19 symptoms, avoid unnecessary in-person patient encounters, and preserved KPNW infection control and pandemic surge capacity.

Wide Variability in Documentation of Sexual Orientation, Gender Identity, and Preventive Health Screenings in a Diverse Sample of U.S. Community Health Centers.

Purpose: This study was conducted to characterize documentation of sexual orientation and gender identity (SOGI) and provision of screening and preventive services in a diverse sample of community health centers (CHCs). Methods: Twelve CHCs provided data submitted to the Health Resources and Services Administration (HRSA) in 2018 from their Uniform Data System (UDS) reports. Prevalence of SOGI documentation, screenings, and preventive services were calculated. Sociodemographic correlates of documentation were analyzed using Fisher's exact test and Wilcoxon rank sum/Mann-Whitney U test. Results: Patient data recording sexual orientation (SO) were missing in 2%-93% of UDS reports from the 12 CHCs, and gender identity (GI) data were missing from 0% to 96% of UDS reports. CHCs were most likely to report body mass index and tobacco screening and least likely to report hepatitis A or B vaccination, independent of SO or GI. Transgender females were less likely to have mammography documented than cisgender females. Transgender males were less likely to have anal Pap tests, be vaccinated for hepatitis B, or be referred for risky alcohol use compared to cisgender males. Patients who identified as "another gender" were less likely to be referred for risky alcohol use, undergo mammography or anal Pap testing, or receive hepatitis A vaccination than cisgender people. Individuals who did not disclose their GI were less likely to be vaccinated for hepatitis A or B than cisgender people. Conclusion: SOGI status was often not documented by a diverse array of CHCs. However, when SOGI status was documented, we saw evidence of disparities in preventive interventions and referrals, particularly for transgender patients. Clinical trial registration number: NCT03554785.

Impact of Social Determinants of Health on Patients with Complex Diabetes Who Are Served by National Safety-Net Health Centers.

OBJECTIVE: Recent research demonstrates an increased need to understand the contribution of social determinants of health (SDHs) in shaping an individual's health status and outcomes. We studied patients with diabetes in safety-net centers and evaluated associations of their disease complexity, demographic characteristics, comorbidities, insurance status, and primary language with their HbA1c level over time. METHODS: Adult patients with diabetes with at least 3 distinct primary care visits between January 1, 2006, and December 31, 2013, were identified in the CHARN data warehouse. These patients were categorized into 4 groups: those without a diagnosis of cardiovascular disease (CVD) or depression; those with CVD but not depression; those with depression but not CVD; and those with CVD and depression. Charlson score; demographic characteristics such as age, sex, and race/ethnicity; and SDHs such as primary language and insurance status were used as predictors. The outcome measure was HbA1c. Hypothesis testing was conducted using 3-level hierarchical linear models. RESULTS: Baseline HbA1c differed significantly across the 4 diabetes groups and by race/ethnicity. The amount of HbA1c change over time differed by insurance status. Patients who were continuously insured tended to have lower baseline HbA1c and a smaller increase. Chinese-speaking patients tended to have lower baseline HbA1c but a larger increase over time compared with English speakers. There were various unexpected associations: compared with the diabetes-only group, mean HbA1c tended to be lower among the other more complex groups at baseline; women tended to have lower measures at baseline; older age and higher Charlson scores were associated with lower HbA1c. CONCLUSIONS: There is still unexplained variability relating to both baseline HbA1c values and change over time in the model. SDHs, such as insurance status and primary language, are associated with HbA1c, and results suggest that these relationships vary with disease status among patients with diabetes in safety-net centers. It is important to recognize that there are complex relationships among demographic and SDH measures in complex patients, and there is work to be done in correctly modeling and understanding these relationships. We also recommend prioritizing the collection of SDH and enabling services data for safety-net patients that would be instrumental in conducting a more comprehensive study.

HIV and Hepatitis C Virus Screening Practices in a Geographically Diverse Sample of American Community Health Centers.

Because of the advent of highly effective treatments, routine screening for HIV and hepatitis C virus (HCV) has been recommended for many Americans. This study explored the perceived barriers surrounding routine HIV and HCV screening in a diverse sample of community health centers (CHCs). The Community Health Applied Research Network (CHARN) is a collaboration of CHCs, with a shared clinical database. In July, 2013, 195 CHARN providers working in 12 CHCs completed a survey of their attitudes and beliefs about HIV and HCV testing. Summary statistics were generated to describe the prevalence of HIV and HCV and associated demographics by CHCs. HIV and HCV prevalence ranged from 0.1% to 5.7% for HIV and from 0.1% to 3.7% for HCV in the different CHCs. About 15% of the providers cared for at least 50 individuals with HIV and the same was true for HCV. Two-thirds saw less than 10 patients with HIV and less than half saw less than 10 patients with HCV. Less than two-thirds followed USPHS guidelines to screen all patients for HIV between the ages of 13 and 64, and only 44.4% followed the guidance to screen all baby boomers for HCV. Providers with less HIV experience tended to be more concerned about routine screening practices. More experienced providers were more likely to perceive lack of time being an impediment to routine screening. Many US CHC providers do not routinely screen their patients for HIV and HCV. Although additional education about the rationale for routine screening may be indicated, incentives to compensate providers for the additional time they anticipate spending in counseling may also facilitate increased screening rates.

Colorectal Cancer Screening Rates at Community Health Centers that Use Electronic Health Records: A Cross Sectional Study.

BACKGROUND: This study was conducted to validate use of electronic health record (EHR) data for measuring colorectal cancer (CRC) screening rates at community health centers (CHCs). METHODS: Electronic health records were queried to assess screening via colonoscopy, flexible sigmoidoscopy, or fecal occult blood testing (FOBT) in 2011. RESULTS: Multiple iterations were required to maximize query accuracy. Manual chart reviews, stratified by screening modality, confirmed query results for 112 of 113 (99.1%) reviewed colonoscopies, 110 of 110 (100%) reviewed FOBTs, and 111 of 120 (92.5%) unscreened patients. At participating CHCs, CRC screening rates ranged from 9.7% to 67.2% (median, 30.6%). Adherence to annual FOBT ranged from 3.3% to 59.0% (median, 18.6%). Most screening was done by colonoscopy. CONCLUSIONS: Colorectal cancer screening varies substantially across CHCs. Electronic health record data can validly measure CRC screening, but repeated assessments of programming accuracy are required. Community health centers may need support to measure quality using EHR data and increase screening.

Colorectal cancer screening at community health centers: A survey of clinicians' attitudes, practices, and perceived barriers.

OBJECTIVE: Colorectal cancer (CRC) screening rates remain lower among some racial/ethnic groups and individuals with low income or educational attainment who are often cared for within community health centers (CHCs). We surveyed clinicians in a network of CHCs to understand their attitudes, practice patterns, and perceived barriers to CRC screening. METHODS: A clinician survey was conducted in 2013 within the Community Health Applied Research Network (CHARN). RESULTS: 180 clinicians completed the survey (47.9% response rate). Participants had an average of 11.5 (SD: 9.8) years in practice, 62% were female, and 57% were physicians. The majority of respondents somewhat agreed (30.2%) or strongly agreed (57.5%) that colonoscopy was the best screening test. However, only 15.8% of respondents strongly agreed and 32.2% somewhat agreed that colonoscopy was readily available for their patients. Fecal immunochemical testing (FIT), a type of fecal occult blood test (FOBT), was viewed less favorably; 24.6% rated FIT as very effective. CONCLUSIONS: Although there are no data showing that screening colonoscopy is superior to FIT, CHC clinicians believe colonoscopy is the best CRC screening test for their patients, despite the high prevalence of financial barriers to colonoscopy. These attitudes could be due to lack of knowledge about the evidence supporting long-term benefits of fecal occult blood testing (FOBT), lack of awareness about the improved test characteristics of FIT compared to older guaiac-based FOBT, or the absence of systems to ensure adherence to regular FOBT screening. Interventions to improve CRC screening at CHCs must address clinicians' negative attitudes towards FIT.

The Community Health Applied Research Network (CHARN) Data Warehouse: a Resource for Patient-Centered Outcomes Research and Quality Improvement in Underserved, Safety Net Populations.

BACKGROUND: The Community Health Applied Research Network, funded by the Health Resources and Services Administration, is a research network comprising 18 Community Health Centers organized into four Research Nodes (each including an academic partner) and a data coordinating center. The network represents more than 500,000 diverse safety net patients across 11 states. OBJECTIVE: The primary objective of this paper is to describe the development and implementation process of the CHARN data warehouse. METHODS: The methods involved regulatory and governance development and approval, development of content and structure of the warehouse and processes for extracting the data locally, performing validation, and finally submitting data to the data coordinating center. PROGRESS TO DATE: Version 1 of the warehouse has been developed. Tables have been added, the population and the years of electronic health records (EHR) have been expanded for Version 2. CONCLUSIONS: It is feasible to create a national, centralized data warehouse with multiple Community Health Center partners using different EHR systems. It is essential to allow sufficient time: (1) to develop collaborative, trusting relationships among new partners with varied technology, backgrounds, expertise, and interests; (2) to complete institutional, business, and regulatory review processes; (3) to identify and address technical challenges associated with diverse data environments, practices, and resources; and (4) to provide continuing data quality assessments to ensure data accuracy.