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

摘要 美国是发达国家中孕产妇和婴儿结局最差的国家之一， 少数种族或少数民族、穷人和/或患有慢性病的人所经历的不成比例 医学疾病。女性在怀孕前后实现生育决定的能力， 预防和终止，可能需要临床医生的参与，他们可能（或可能不）促进访问 生殖服务。因此，为了更好地了解孕产妇和围产期不良的根本原因， 结果，我们认为，生殖保健环境需要更密切的调查。研究 绝大多数人认为，那些被社会边缘化的人或患有慢性和复杂医疗疾病的人， 疾病经历消极的生殖保健遭遇。这样的遭遇可能会阻止病人 获得所需的信息，服务和支持，以制定和执行生殖决策， 他们的价值观和优先事项。患者认为他们的生殖自主性受到了破坏 在医疗保健方面，可能会感到被剥夺权力，不信任他们的临床医生和医疗保健 环境，不太可能遵循临床建议或接受后续护理-所有这些都可能 对他们的健康和福祉的有害影响。因此，人们经历生殖的程度 在医疗机构中的自主权可能是理解医疗保健如何发挥作用的一个关键但未充分研究的因素。 环境可能会影响产妇的健康和结果。没有量化措施来捕捉这一点 构建或将其与以患者为中心的或临床结果联系起来。因此，我们建议制定一项新的措施， 生殖自主医疗（RAH）我们将完善我们对RAH的初步概念化 通过定性访谈和概念图。我们将使用此框架生成初步项目 对于RAH措施。我们将在跨学科内容专家小组的指导下完善这些项目 和对病人的认知访谈。最后，我们将在育龄人群中进行RAH测量的现场测试 社会边缘化妇女和/或患有慢性疾病的妇女，评估其可接受性， 初步的心理测量特性在未来的工作中，我们将在一个大的队列中验证RAH措施， 不同的妇女，并评估RAH作为下游临床疾病的中介者或调节者的潜在作用。 早产高危妇女的结果以及孕产妇发病率和死亡率。

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.