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.
Infertility affects roughly one in 5 US adults. At the conclusion of this study, we will have collected and analyzed longitudinal data on the decision-making experiences of patients seeking treatment for infertility, providing much-needed information about how individuals and couples negotiate the multifaceted cognitive and emotional terrain that infertility decision making presents. The results from our investigation will improve understanding of how to assist patients facing complex decisions.