Decision Making by Patients Seeking Care for Fertility Problems

项目总结

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.