ImportanceSARS-CoV-2 infection is associated with persistent, relapsing, or new symptoms or other health effects occurring after acute infection, termed postacute sequelae of SARS-CoV-2 infection (PASC), also known as long COVID. Characterizing PASC requires analysis of prospectively and uniformly collected data from diverse uninfected and infected individuals.ObjectiveTo develop a definition of PASC using self-reported symptoms and describe PASC frequencies across cohorts, vaccination status, and number of infections.Design, Setting, and ParticipantsProspective observational cohort study of adults with and without SARS-CoV-2 infection at 85 enrolling sites (hospitals, health centers, community organizations) located in 33 states plus Washington, DC, and Puerto Rico. Participants who were enrolled in the RECOVER adult cohort before April 10, 2023, completed a symptom survey 6 months or more after acute symptom onset or test date. Selection included population-based, volunteer, and convenience sampling.ExposureSARS-CoV-2 infection.Main Outcomes and MeasuresPASC and 44 participant-reported symptoms (with severity thresholds).ResultsA total of 9764 participants (89% SARS-CoV-2 infected; 71% female; 16% Hispanic/Latino; 15% non-Hispanic Black; median age, 47 years [IQR, 35-60]) met selection criteria. Adjusted odds ratios were 1.5 or greater (infected vs uninfected participants) for 37 symptoms. Symptoms contributing to PASC score included postexertional malaise, fatigue, brain fog, dizziness, gastrointestinal symptoms, palpitations, changes in sexual desire or capacity, loss of or change in smell or taste, thirst, chronic cough, chest pain, and abnormal movements. Among 2231 participants first infected on or after December 1, 2021, and enrolled within 30 days of infection, 224 (10% [95% CI, 8.8%-11%]) were PASC positive at 6 months.Conclusions and RelevanceA definition of PASC was developed based on symptoms in a prospective cohort study. As a first step to providing a framework for other investigations, iterative refinement that further incorporates other clinical features is needed to support actionable definitions of PASC.
The release of final rules from the Office of the National Coordinator for Health Information Technology's (ONC) Cures Act in March 2020 places a new focus on patients' access to their health data. 1 The ONC rules make "health data more computable and [give] patients more control of their medical record." 1 Hopefully, patients will be able to interact more easily with their data through patient portals and mobile health apps, and "shop for care by comparing costs, understanding possible treatments, and expected health outcomes." 1 The new rules intend to increase the pace of innovation and investment in patient-facing tools. Building on more than 300 000 health apps and $7.4 billion in digital health investments in 2019 alone, this policy environment may significantly transform the ways patients access care. 2 In light of the current coronavirus disease 2019 (COVID-19) pandemic, and the success in Taiwan and Singapore in using health information to identify, trace, track, and quarantine individuals, a more user-friendly system has become even more important. 3,4 However, improvements in patient self-management, care coordination, quality, and cost-effectiveness may be stymied by persisting digital divides. Given the recognition of the higher morbidity and mortality for underserved patients with COVID-19, including African Americans, understanding and eliminating these digital divides are critical. 5 Thus, the benefits of these innovations will require active efforts to ensure the needs of diverse groups are included in design and implementation strategies.Two patient-facing tools, patient portals and mobile health apps, represent patients' primary digital touch points with the health care system, and the importance of these tools is expanded with the new rules. These modalities also serve as means to access telehealth services, collect data, and address population health, patient-reported outcomes, and social determinants of health. Patient portals are one of the earliest investments in telehealth technology, yet uptake has lagged among underserved populations, including patients of racial/ethnic minority groups, limited English proficiency, low socioeconomic status, older age, and low literacy. 6 For example, Anthony et al 6 found that patients on Medicaid or with less than a high school diploma were about twice as likely to be nonportal users. This is not only relevant for clinical care, but also for research as portals become trial recruitment tools.Similarly, mobile apps have not been designed for underserved populations. 7 The ONC rules should prompt renewed efforts aimed at digital health equity. This will require guiding the commercial and regulatory landscape that currently influences the design and implementation of these technologies. In this Viewpoint, we highlight inequities in these digital health tools and opportunities to apply an equity framework in the era of expanded patient access to data.
Case management was successful at promoting mammography screening uptake, although no change in longitudinal patterns was found. Housing concerns and lacking a regular provider should be addressed to promote mammography uptake. Future research should provide social assessment and address social obstacles in a randomized controlled setting to confirm the efficacy of social determinant approaches to improve mammography use.
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