7 research outputs found

    A Framework for Femtech: Guiding Principles for Developing Digital Reproductive Health Tools in the United States

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    The United States has abysmal reproductive health indices that, in part, reflect stark inequities experienced by people of color and those with preexisting medical conditions. The growth of “femtech,” or technology-based solutions to women’s health issues, in the public and private sectors is promising, yet these solutions are often geared toward health-literate, socioeconomically privileged, and/or relatively healthy white cis-women. In this viewpoint, we propose a set of guiding principles for building technologies that proactively identify and address these critical gaps in health care for people from socially and economically marginalized populations that are capable of pregnancy, as well as people with serious chronic medical conditions. These guiding principles require that such technologies: (1) include community stakeholders in the design, development, and deployment of the technology; (2) are grounded in person-centered frameworks; and (3) address health disparities as a strategy to advance health equity and improve health outcomes

    The Impact of US Abortion Policy on Rheumatology Clinical Practice: A Cross-Sectional Survey of Rheumatologists

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    In June of 2022, the US Supreme Court\u27s decision in Dobbs v Jackson Women’s Health overturned Roe v Wade, finding that there was no federal constitutional right to abortion. Subsequently, almost one third of states have near-total abortion bans in effect. Our team distributed a confidential web-based survey to a sample of US-based rheumatologists to assess how the Dobbs decision is affecting the clinical care of reproductive-age females with rheumatic diseases (RMDs), including teratogen prescribing, pregnancy termination referrals, and rheumatologists’ perceived vulnerability to criminalization

    Patient Care Pathways for Pregnancy in Rare and Complex Rheumatic Diseases:Results From an International Survey

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    OBJECTIVE: To map existing organizational care pathways in clinical centers of expertise that care for pregnant women affected by rare and complex connective tissue diseases (rcCTDs). METHODS: An international working group composed of experts in the field of pregnancy in rcCTDs co-designed a survey focused on organizational aspects related to the patient's pathway before, during, and after pregnancy. The survey was distributed to subject experts through referral sampling. RESULTS: Answers were collected from 69 centers in 21 countries. Patients with systemic lupus erythematosus and/or antiphospholipid syndrome were followed by more than 90% of centers, whereas those with disorders such as IgG4-related diseases were rarely covered. In the majority of centers, a multidisciplinary team was involved, including an obstetrician/gynecologist in 91.3% of cases and other healthcare professionals less frequently. Respondents indicated that 96% of the centers provided routine pre-pregnancy care, whereas the number of patient visits during pregnancy varied across centers. A formalized care pathway was described in 49.2% of centers, and 20.3% of centers had a predefined protocol for the monitoring of pregnant patients. Access to therapies during pregnancy also was heterogeneous among different centers. CONCLUSION: In international referral centers, a high level of care is provided to patients with rcCTDs before, during, and after pregnancy. No significant discrepancies were found between European and non-European countries. However, this work highlights a potential benefit to streamlining the care approaches across countries to optimize pregnancy and perinatal outcomes among patients with rcCTDs.</p

    Patient care pathways for pregnancy in rare and complex rheumatic diseases: results from an international survey

    No full text
    OBJECTIVE: To map existing organizational care pathways in clinical centers of expertise that care for pregnant women affected by rare and complex connective tissue diseases (rcCTDs). METHODS: An international working group composed of experts in the field of pregnancy in rcCTDs co-designed a survey focused on organizational aspects related to the patient's pathway before, during and after pregnancy. The survey was deployed to subject experts via referral sampling. RESULTS: Answers were collected from 69 centers in 21 countries. Patients with systemic lupus erythematosus and/or antiphospholipid syndrome were followed by more than 90% of centers, while diseases such as IgG4-related diseases were rarely covered. In the majority of centers, a multidisciplinary team was involved, including an obstetrician/gynaecologist in 91.3% of cases and other healthcare professionals less frequently. Respondents indicated that 96.0% of the centers provided routine pre-pregnancy care, while the number of patient visits during pregnancy varied across centers. A formalized care-pathway was described in 49.2% of centers, and 20.3% of centers had a pre-defined protocol for the monitoring of pregnant patients. Access to therapies during pregnancy also was heterogeneous among different centers. CONCLUSION: In international referral centers, a high level of care is provided to patients with rcCTDs before, during and after pregnancy. No significant discrepancies were found between European and non-European countries. However, this work highlights a potential benefit to streamline the care approaches across countries in order to optimize pregnancy and perinatal outcomes among patients with rcCTDs
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