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

摘要 美国是发达国家中母婴结局最差的国家之一，它们是 种族或少数民族、贫穷和/或患有慢性病的人经历的不成比例 医学上的疾病。妇女在怀孕、怀孕期间实施其生殖决定的能力 预防和终止可能需要临床医生的参与，他们可能(也可能不)促进访问 生殖服务。因此，为了更好地了解不良孕产妇和围产儿的根本原因 鉴于这一结果，我们认为需要对生殖保健环境进行更密切的调查。研究 压倒性地表明被社会边缘化或患有慢性复杂疾病的人 疾病经历了消极的生殖健康护理。这样的遭遇可能会阻止患者 获得制定和执行符合以下条件的生殖决策所需的信息、服务和支持 他们的价值观和优先事项。认为自己的生殖自主性受到损害的患者 在医疗保健背景下，可能会感到无能为力，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产生有害影响。因此，人们经历生殖的程度 医疗保健环境的自主性可能是理解医疗保健如何 环境可能会影响产妇的健康和结局。目前还没有量化的方法来衡量这一点 构建或将其与以患者为中心或临床结果联系起来。因此，我们建议制定一项新的措施 医疗中的生殖自主(RAH)。我们将完善我们对RAH的初步概念 通过定性访谈和概念图绘制。我们将使用此框架来生成初步项目 对于RAH衡量标准。我们将在一个由内容专家组成的跨学科小组的指导下对这些项目进行细化 以及对患者的认知访谈。最后，我们将在育龄人群中进行RAH测量的现场测试 被社会边缘化和/或患有慢性病的妇女评估其可接受性和评估其 初步的心理测量学特性。在未来的工作中，我们将在一大批 不同的女性，评估RAH作为下游临床的媒介或调节物的潜在作用 早产高危妇女的结局，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.