Development of a novel, patient-centered measure of reproductive autonomy in the healthcare context

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ABSTRACT The United States has among the worst maternal and infant outcomes of developed countries, which are disproportionately experienced by people who are racial or ethnic minorities, poor, and/or have chronic medical illnesses. The ability for women to actualize their reproductive decisions around pregnancy, pregnancy prevention, and termination, may require the involvement of clinicians, who may (or may not) facilitate access to reproductive services. Thus, to better understand the root causes of adverse maternal and perinatal outcomes, we believe that the reproductive healthcare setting requires closer investigation. Studies overwhelmingly suggest that people who are socially marginalized or have chronic and complex medical illnesses experience negative reproductive health care encounters. Such encounters may prevent patients’ access to the information, services, and supports needed to make and execute reproductive decisions that align with their values and priorities. Patients who perceive that their reproductive autonomy has been undermined in the healthcare context may feel disempowered, distrustful of their clinicians and the health care environment, and unlikely to follow clinical recommendations or receive follow-up care— all of which may have deleterious effects on their health and well-being. Thus, the extent to which people experience reproductive autonomy in healthcare settings may be a critical but understudied factor in understanding how the healthcare environment may influence maternal health and outcomes. No quantitative measure exists to capture this construct or link it to patient-centered or clinical outcomes. We therefore propose to develop a novel measure of Reproductive Autonomy in Healthcare (RAH). We will refine our preliminary conceptualization of RAH through qualitative interviews and concept mapping. We will use this framework to generate preliminary items for the RAH measure. We will refine the items with guidance from an interdisciplinary panel of content experts and cognitive interviews with patients. Finally, we will field test the RAH measure among reproductive-age women who are socially marginalized and/or have chronic diseases to assess its acceptability and evaluate its preliminary psychometric properties. In future work, we will validate the RAH measure in a large cohort of diverse women and evaluate the potential roles of RAH as a mediator or moderator of downstream clinical outcomes in women at high risk for preterm birth, and maternal morbidity and mortality.