Decision Making by Patients Seeking Care for Fertility Problems

描述（由申请人提供）：与不孕有关的决定是复杂的。什么是“正确”的决定通常是不清楚的，即使病人在考虑了最好的证据后确定自己的偏好。由于治疗效果和结果的不确定性、潜在治疗的高成本、关于治疗价值的社会压力、先前决定及其结果的影响，以及必须承担不同成本并可能有相互冲突的偏好的多个决策者的存在，这些决定变得复杂。不孕症的决策与高昂的情感、经济和潜在的健康成本有关。然而，对于患者如何协调其多方面的认知和情感领域，对治疗计划进行深思熟虑并达成共识，并随着治疗的进展调整他们的计划，人们知之甚少。这项拟议的研究探讨了患者在咨询生殖内分泌学后的第一年如何做出生育决定，包括影响决策的临床、经济和社会因素。我们的目标是建立一个全面的、纵向的定性、定量和临床测量数据库，这将提供一个独特的有利位置，从这个角度来探索夫妇在生育治疗方面做出决定的各种方式。我们的两个具体目标是：(1)探索决策模式随时间的变化(2)确定研究需求，以改善不孕患者的决策。为了实现这些目标，我们汇集了一支在医疗决策、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、定性和调查方法方面具有专业知识的团队。我们将使用一种探索性的混合方法，从35对夫妇的双方成员安排他们第一次咨询生殖内分泌学家开始，为期一年。参与者将是以前没有寻求过生殖内分泌学家治疗的新患者。我们将对每位参与者进行6次访谈：在初次咨询之前和之后不久；患者收到初步诊断检查结果后；在初次咨询后的6、9和12个月。访谈将包括随着时间的推移所做的考虑和决定，以及参与者对各种治疗结果可能性的理解，以及他们如何评价这些结果。我们将用调查数据（包括与生育有关的决策冲突和生活质量）和来自医疗记录的临床数据来增加访谈数据。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在第一年的经验

DESCRIPTION (provided by applicant): Decisions related to infertility are complex. What constitutes the "right" decision is often unclear, even for patients sure of their preferences afte 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 endocrinologis, 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 couples make decisions regarding fertility treatments over time. Our 2 Specific Aims are (1) To explore patterns of decision making over time and (2) To identify research needs 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 both members of 35 couples 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. 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 at 6, 9, and 12 months after the initial consult. Interviews will covr deliberation and decisions made over time as well as participants' 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 provie a rich data set for use in examining and reporting the experiences of patients in the first year of 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 over time.