To describe how couples navigate infertility treatment decisions, including how they deliberate and reach consensus on plans for family building, how they adapt their plans as treatment progresses, and how they view past decisions.
Design
Longitudinal, mixed-methods study on infertility decisionmaking among couples making an initial appointment with a reproductive specialist (RS) at an academic medical center in a Midwestern state without a health insurance mandate. We used interview and survey data to construct the treatment paths couples pursued considering financial and emotional resources and decision-making approaches.
Materials and Methods
Each member of 37 couples separately completed surveys and interviews up to 6 times during the year after making a first appointment; clinical data were abstracted from medical records. Data were managed/analyzed in REDCap, NVivo, and Stata. Written transcripts were systematically coded via standard procedures for content analysis (>10% double coded).
Results
Through analysis of 414 interviews, we found that before an initial consultation with a RS most patients and their partners viewed gaining information as a key goal in meeting with a RS. Financial resources played an important role in shaping couples’ decision-making processes, and many respondents identified finances as an important constraint. Before their first appointment, 55% of respondents identified costs associated with trying to have a child as ‘‘quite a bit’’ or ‘‘very much’’ important to their decision-making, and that percentage increased to 64% after couples met with a RS. Couples able to purchase the care they desired generally moved relatively quickly both to consensus and to acting on their preferences. In contrast, couples whose finances were more constrained often delayed pursuing treatment that they otherwise agreed they would choose or worked together to identify a second-choice alternative that was financially feasible. Even as couples moved forward with one treatment path they often had a 2nd-choice alternative already in mind, as many were aware of the uncertainty associated with any given course of treatment. Finally, when looking back over the year, many supporting partners expressed regret at not being more involved along the way.
Conclusions
Understanding how couples reach consensus concerning plans for reproductive treatment holds promise to improve quality of care and increase long-term decisional satisfaction for patients and their partners. When couples first meet with a RS, most have not already made any decisions and are seeking information and advice. A key factor shaping couples’ abilities to reach agreement and proceed with treatment is their financial resources. Those who cannot afford their ‘‘first choice’’ often need the opportunity to ruminate and may appreciate input from the RS on next-best alternatives.
Alexandra L. Cooper, Elizabeth Ann Duthie, Kate D. Schoyer, Joseph B. Davis, Kathryn E. Flynn
Alex Cooper, A Cooper, Liz Duthie, Beth Duthie, Betsy Duthie, E Duthie, Catherine Schoyer, Katherine Schoyer, Kathryn Schoyer, K Schoyer, Joe Davis, Joey Davis, J Davis, Kathy Flynn, Kate Flynn, K Flynn
DOI 10.1016/j.fertnstert.2016.07.123 10.1016/j.fertnstert.2016.07.123 Cooper et al. 2016, Cooper 2016
Related articles
Informed Consent · Patient Preferences and Priorities
Patient-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. In 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. Content 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. Patient-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.
Perrotta M et al., 2022·Sociol Health Illn·
Open Access
With the increasing offer of fertility treatment by a largely privatised sector, which has involved the proliferation of treatment add-ons lacking evidence of effectiveness, In-Vitro Fertilisation (IVF) patients are expected to make informed choices on what to include in their treatment. Drawing on interviews with 51 individuals undergoing fertility treatment, this article explores patients' approaches to medical evidence interpretation and its role in their decisions to include add-ons. While most IVF patients share understandings of what counts as medical evidence, our findings show how their approaches also differ. Our analysis focuses on how patients negotiate the notion of medical evidence and its relation to other forms of experience or knowledge. We present four different approaches to evidence in (1) delegating evaluations of evidence to experts; (2) critically assessing available evidence; (3) acknowledging the process of making evidence; and (4) contextualising evidence in their lived experience of infertility. We suggest that patients' choice to include add-ons is not due to a lack of information on or understanding of evidence, but rather should be interpreted as part of the complexity of patients' experiences of infertility.
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Parnell T et al., 2026·Journal of Restorative Reproductive Medicine
To evaluate adherence to published American Society for Reproductive Medicine (ASRM) and American Urological Association (AUA) infertility evaluation and treatment recommendations among commercially insured infertility patients who subsequently underwent in vitro fertilization (IVF), and to assess whether observed care gaps support the need for a restorative reproductive medical framework.
A retrospective claims-based analysis was performed using MarketScan® Commercial Claims and Encounter Data between January 1, 2021, and December 31, 2024. Approximately five million commercially insured members were evaluated. Patients with infertility-related diagnoses who subsequently underwent IVF were identified. Claims were analyzed for evidence of selected diagnostic testing, medical treatment, or surgical interventions recommended by ASRM or AUA/ASRM guidance for specific infertility-related diagnoses before IVF initiation. Cumulative adherence rates were assessed up to nine months following initial infertility diagnosis and compared with the timing of initiating IVF.
IVF initiation started early and consistently preceded completion of most recommended evaluations and treatments. By 3 months, the proportion of patients with IVF initiation ranged from 28% to 39% across different infertility-related diagnoses, while adherence to most recommended interventions remained low. Overall, by 9 months, IVF utilization had reached 70–85%, while many recommended evaluations and treatments remained below 40% adherence, with several interventions remaining below 15%. Observed care gaps (percentage of patients receiving IVF prior to other evaluation or treatment recommendations) ranged from approximately 13% to 78% for most recommended evaluations and treatments, with several measures demonstrating gaps over 50% of patients.
These findings suggest substantial divergence between published infertility-care recommendations and observed practice patterns. From the perspective of restorative reproductive medicine (RRM), the gaps are clinically important because many recommended steps are directed toward identifying, correcting, restoring, or preserving reproductive function and anatomy before offering or initiating IVF treatment. Limitations to these data include lack of individualized patient medical data, preferences, or circumstances, and not capturing any treatment that was not reimbursed by commercial insurance (i.e., any cash payment for services). In addition, the recommendations assessed have variable levels of underlying evidence, and likely vary in the level of their acceptance among practicing clinicians.
Many commercially insured infertility patients progressed to IVF without documented evidence of diagnostic evaluation or therapeutic interventions recommended in ASRM and AUA/ASRM guidance. These findings raise important questions regarding the implementation of adequate evaluation before IVF and the extent to which patients receive meaningful opportunities for diagnosis-directed treatment of potentially reversible causes of infertility. The findings further suggest an important role for RRM as a quality-of-care framework focused on comprehensive evaluation, correction of underlying dysfunction, preservation of reproductive anatomy and physiology, and optimization of patient-centered fertility care, prior to considering IVF.