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.
Elizabeth Ann Duthie, Alexandra L. Cooper, Joseph B. Davis, Katherine D Schoyer, Kathryn E. Flynn
Liz Duthie, Beth Duthie, Betsy Duthie, E Duthie, Alex Cooper, A Cooper, Joe Davis, Joey Davis, J Davis, Kathy Schoyer, Kate Schoyer, Katie Schoyer, K Schoyer, Kathy Flynn, Kate Flynn, K Flynn
PMID 28882134 28882134 DOI 10.1186/s12978-017-0375-5 10.1186/s12978-017-0375-5 Duthie et al. 2017, Duthie 2017
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. 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. 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). 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. 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.
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.
Advocacy and Public Understanding · Public Awareness
Parnell TA et al., 2026·Journal of Restorative Reproductive Medicine
This study examined public attitudes toward restorative reproductive medicine (RRM) and in vitro fertilization (IVF) using secondary analysis and comparative reporting of two independent surveys conducted in the United States. It also explored preferences among individuals with fertility issues and the general population’s views on treatment options. A secondary analysis was conducted using data from two nationally representative online surveys, designed and administered by organizations independent of the researchers, whose samples demographically reflected the U.S. adult population. The surveys—conducted by J.L. Partners (N=1002) and McLaughlin & Associates (N=1000)—assessed familiarity, acceptance, and attitudes toward IVF and RRM. The J.L. Partners survey focused on IVF, including medical risks, creation and use of embryos, preimplantation genetic testing, arguments for government oversight of IVF, and overall attitudes toward IVF. The McLaughlin survey focused on comparative descriptions of IVF and RRM. Pearson’s Chi-Square tests of independence were used to assess differences in response distributions across demographic subgroups and between survey items of interest. Findings: Overall, there was strong consistency of responses to items that were similar in the two surveys. Approximately 80% supported IVF initially, although both surveys found respondents to have limited knowledge about IVF procedures. In contrast, 33% supported RRM initially, with 43% having never heard of RRM. After learning more about the characteristics of RRM and IVF approaches, as presented within the surveys, preference shifted toward approaches consistent with RRM (e.g., 69% preference for an approach for natural fertilization in a woman’s body vs. 17% for fertilization in a lab). Respondents prioritized baby health (74%) over cost (13%) and time to conceive (6%). Many IVF patients were concerned about undiagnosed health issues and being rushed into IVF. Overall, 70% wanted treatments that addressed underlying causes; nearly half were unaware of any medical risks of IVF. Stated support for IVF declined by 10% overall after presentation of medical risks, questions about the creation and use of embryos and genetic testing, and arguments to support government oversight of IVF. Both surveys showed strong support for patient access to full information about treatments and treatment processes. While IVF is widely accepted, these national survey data suggest preferences for fertility treatments that prioritize diagnosis and restoration of natural reproductive health, which is the focus of restorative reproductive medicine. Comprehensive assessment, restoration of healthy function, transparency regarding treatment processes, and sensitivity to ethical concerns in patient care reflect important public values. Greater awareness and public education, improved consent, more research, and ongoing surveys are needed to inform public health strategies and meet patient needs in fertility care.
Measurement and Statistics · Instrument Development and Validation
Many women throughout the world have history of subfertility (resolved or unresolved), but much remains unknown about services and treatments chosen. We developed a mixed-mode fertility experiences questionnaire (FEQ) in 2009 through literature review and iterative pilot work to optimize question format and mode of administration. The focus of the FEQ is to collect data retrospectively on time at risk for pregnancy, fertility treatments received and declined, pregnancy, time to pregnancy and pregnancy outcomes. We conducted a validation of key elements of the FEQ with comparison to medical records in 2009 and 2010. The validation sample was selected from women initially seen at a specialized fertility treatment center in Utah in 2004. The FEQ was optimized with two components: 1) written (paper or web-based), self-administered, followed by 2) telephoneadministered questions. In 63 patients analyzed, high levels of correlation were identified between patient self-report and medical records for the use of intrauterine insemination and assisted reproductive technology, pregnancy and live birth histories, time at risk for pregnancy and time to pregnancy. There was low correlation between medical records and self-report for the use of oral ovulation drugs and injectable ovulation drugs. Compared to the medical record, the FEQ was over 90% sensitive for all elements, except injectable ovulation drugs (70% sensitivity). The FEQ accurately captured elements of fertility treatment history at 5-6 years after the first visit to a specialty clinic.