Abstract
BackgroundPatient-centered care is a pillar of quality health care and is important to patients experiencing infertility. In this study we used empirical, in-depth data on couples’ experiences of infertility treatment decision making to inform and revise a conceptual framework for patient-centered fertility treatment that was developed based on health care professionals’ conceptualizations of fertility treatment, covering effectiveness, burden, safety, and costs.MethodsIn this prospective, longitudinal mixed methods study, we collected data from both members (separately) of 37 couples who scheduled an initial consult with a reproductive specialist. Data collection occurred 1 week before the initial consultation, 1 week after the initial consultation, and then roughly 2, 4, 8, and 12 months later. Data collection included semi-structured qualitative interviews, self-reported questionnaires, and medical record review. Interviews were recorded, transcribed, and content analyzed in NVivo. A single coder analyzed all transcripts, with > 25% of transcripts coded by a second coder to ensure quality control and consistency.ResultsContent analysis of the interview transcripts revealed 6 treatment dimensions: effectiveness, physical and emotional burden, time, cost, potential risks, and genetic parentage. Thus, the revised framework for patient-centered fertility treatment retains much from the original framework, with modification to one dimension (from safety to potential risks) and the addition of two dimensions (time and genetic parentage). For patients and their partners making fertility treatment decisions, tradeoffs are explicitly considered across dimensions as opposed to each dimension being considered on its own.ConclusionsPatient-centered fertility treatment should account for the dimensions of treatment that patients and their partners weigh when making decisions about how to add a child to their family. Based on the lived experiences of couples seeking specialist medical care for infertility, this revised conceptual framework can be used to inform patient-centered treatment and research on infertility and to develop decision support tools for patients and providers.
Highlights
Patient-centered care is a pillar of quality health care and is important to patients experiencing infertility
We collected data through interviews, questionnaires, and medical records from both members of 37 couples who scheduled a new appointment with a reproductive specialist
In the context of a prospective, longitudinal cohort study on United States (US) couples’ infertility decision making, we examined a subset of patients and their partners who pursued multiple medical treatments for infertility
Summary
Patient-centered care is a pillar of quality health care and is important to patients experiencing infertility. The Institute of Medicine has long prioritized patientcenteredness in care, that is, “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” [1]. Research from Europe has suggested that while patients from many different countries view patientcentered fertility care [3], there is a gap in priorities between patients and reproductive specialists. In a discrete choice experiment in Dutch and Belgian fertility clinics, reproductive specialists overestimated how much patients value pregnancy rates and underestimated the value patients place on patient-centered care [4]. Relatively little empirical work on patientcentered care has been conducted, especially in the United States (US), where health insurance coverage of testing and treatment varies widely by state
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