Decision Making by Patients Seeking Care for Fertility Problems

项目总结 与不孕症相关的决定是复杂的。是什么构成了正确的决定往往是不清楚的，即使是 患者在考虑了最好的证据后，确定了自己的偏好。决定变得复杂起来，因为 治疗效果和结果的不确定性、潜在治疗的高昂成本、社会压力 关于治疗的价值，以前的决定及其结果的影响，以及 多个决策者，他们必然承担不同的成本，并可能有相互冲突的偏好。不孕不育 决策与高昂的情感、经济和潜在的健康成本有关。然而，人们对此知之甚少 关于患者如何协商其多方面的认知和情感领域，深思熟虑并达成共识 制定治疗计划，并随着治疗进展调整他们的计划。拟议的研究探索了如何 患者在咨询生殖内分泌学家后的第一年里做出了生育决定， 包括影响决策的临床、经济和社会因素。我们的目标是创造一个 全面、纵向的定性、定量和临床测量数据库，将提供 探索个人和夫妇的各种方式的独特有利位置 随着时间的推移，关于生育治疗的决定。我们的两个具体目标包括：(1)探索 随着时间的推移作出决策，以及(2)确定改善生育率决策的机会并确定其优先顺序 病人。为了实现这些目标，我们汇集了一支在医疗决策方面具有专业知识的团队， 生殖内分泌学、生殖伦理学、社会学、文化和医学人类学、政治学、 以及临床、定性和调查方法。我们将使用探索性混合方法 在为期一年的时间里，80名患者包括35对夫妇中的两名成员和10名非伴侣个人 当他们安排第一次咨询生殖内分泌学家的时候。参与者将是新患者 他们之前没有向生殖内分泌学家寻求过治疗。在寻求帮助的夫妇中 治疗，招募这对夫妇的两个成员是必要的。我们将采访每个人 参与者6次：在初次会诊之前和之后不久；在患者收到结果后 初步诊断测试；以及首次会诊后6、9和12个月。采访将包括深思熟虑和 随着时间的推移做出的决定以及患者对各种治疗结果的概率的理解 以及他们如何评价这些结果。我们将用调查数据来充实采访数据，包括决策 与生育有关的冲突和生活质量，以及与医疗记录中的临床数据的冲突。这项探索性研究 将提供丰富的数据集，用于检查和报告患者开始不孕的经历 治疗，用于确定在决策过程中提供支助的机会，并产生 未来不孕不育决策研究的假设。它还将为更广泛的 更全面地理解患者如何就复杂的医疗决定进行谈判。

PROJECT SUMMARY Decisions related to infertility are complex. What constitutes the ¿right¿ decision is often unclear, even for patients sure of their preferences after taking into account the best evidence. The decisions are complicated by uncertainty about treatment efficacy and outcomes, high costs of potential treatments, social pressures regarding the value of treatment, the impact of previous decisions and their outcomes, and the presence of multiple decision makers who necessarily bear different costs and may have conflicting preferences. Infertility decision making is associated with high emotional, financial, and, potentially, health costs. Yet little is known about how patients negotiate its multifaceted cognitive and emotional terrain, deliberate and reach consensus on plans for treatment, and adapt their plans as treatment progresses. The proposed research explores how patients navigate fertility decisions during their first year after consulting a reproductive endocrinologist, including the clinical, economic, and social factors that shape decision making. Our objective is to create a comprehensive, longitudinal database of qualitative, quantitative, and clinical measures that will provide a unique vantage point from which to explore the variety of ways in which individuals and couples make decisions regarding fertility treatments over time. Our 2 Specific Aims include (1) To explore patterns of decision making over time and (2) To identify and prioritize opportunities to improve decision making for fertility patients. To achieve these aims, we bring together a team with expertise in medical decision making, reproductive endocrinology, reproductive ethics, sociology, cultural and medical anthropology, political science, and clinical, qualitative, and survey methodologies. We will use an exploratory mixed methods approach with 80 patients¿both members of 35 couples plus 10 unpartnered individuals¿during a 1-year period beginning when they schedule their first consultation with a reproductive endocrinologist. Participants will be new patients who have not previously sought treatment from a reproductive endocrinologist. Among couples seeking treatment, recruitment of both members of the couple is necessary for inclusion. We will interview each participant on 6 occasions: shortly before and after the initial consult; after the patient receives the results of initial diagnostic tests; and 6, 9, and 12 months after the initial consult. Interviews will cover deliberation and decisions made over time as well as patients¿ understanding of the probabilities of various treatment outcomes and how they value those outcomes. We will augment the interview data with survey data, including decisional conflict and quality of life related to fertility, and with clinical data from medical records. This exploratory study will provide a rich data set for use in examining and reporting the experiences of patients commencing infertility treatment, for identifying opportunities to provide support in the decision-making process, and for generating hypotheses for future research on decision making in infertility. It will also contribute to a broader understanding of how patients negotiate complex medical decisions more generally.