Patient-centered elective egg freezing: a binational qualitative study of best practices for women’s quality of care

Abstract

Purpose How can elective egg freezing (EEF) be made patient centered? This study asked women to reflect on their experiences of EEF, which included their insights and recommendations on the optimal delivery of patient-centered care. Methods In this binational, qualitative study, 150 women (114 in the USA, 36 in Israel) who had completed at least one cycle of EEF were recruited from four American IVF clinics (two academic, two private) and three in Israel (one academic, two private) over a two-year period (June 2014-August 2016). Women who volunteered for the study were interviewed by two medical anthropologists. Interviews were audio recorded, transcribed, and entered into a qualitative data management program (Dedoose) for analysis. Results The majority (85%) of women were without partners at the time of EEF, and thus were undertaking EEF alone in mostly couples-oriented IVF clinics. Following the conceptual framework known as Bpatient-centered infertility care,^we identified two broad categories and eleven specific dimensions of patient-centered EEF care, including (1) system factors: information, competence of clinic and staff, coordination and integration, accessibility, physical comfort, continuity and transition, and cost and (2) human factors: attitude and relationship with staff, communication, patient involvement and privacy, and emotional support. Cost was a unique factor of importance in both countries, despite their different healthcare delivery systems.

‘I feel that injustice is being done to me’: a qualitative study of women’s viewpoints on the (lack of) reimbursement for social egg freezing

“…In accordance with previous qualitative studies on SEF [20,38], we found that some participants felt discriminated against while reimbursement was not available. It is striking that some, being single, felt discriminated against based on their relationship status whereas Belgian compulsory health insurance covers single women in the same way as women in relationships if they undergo a full IVF procedure [39].…”

Knowledge about the impact of age on fertility: a brief review

“…However, research points out that women interested in elective egg freezing are often at the end of their reproductive life spans (late 30 s to early 40 s). These women want children, but have no partner with whom to build a family ( 57 ). Although the chances to have a child are rather low, the procedure is expensive (between 1500 €and 3000 €per cycle) and not affordable for everyone.…”

The marketing of elective egg freezing: A content, cost and quality analysis of UK fertility clinic websites

“…This was associated with perceived lower adequacy of information and emotional support provided to the women, suggesting that better-quality information can help women in their deliberations about egg freezing and reduce the incidence of feelings of regret. Echoing this sentiment in the findings of their detailed qualitative interview study with 150 women who froze their eggs in the USA and Israel, Inhorn et al (2019) also highlighted the importance of making accurate and detailed information available. In fact, they identified the provision of clear and detailed information as a key component of their 11 specific dimensions constituting ‘best practice’ in ‘patient-centred elective egg freezing’.…”

“…She has argued for the importance of including as much accurate data as possible, as well as a discussion of remaining uncertainties as part of informed consent processes, writing, ‘Perhaps most important of all, potential egg freezers need to understand that even if eggs survive the thawing process, there are no guarantees that a future IVF cycle will be successful’. Currently, there is very little information about egg freezing on UK fertility clinic websites that would fulfil either the patient-centred criteria explained by Inhorn et al (2019) , or the legal and ethical requirements outlined by Jackson (2018) .…”

“…Although some ethicists have argued that this should not be the case ( Mertes and Pennings, 2012 ), it is extremely unlikely to change; the authors foresee that EEF will continue to grow as a central offering of the private fertility sector, with some scholars even placing EEF at the heart of the growing logic and practices of the ‘financialization of fertility’ ( van de Wiel, 2020 ). While there has been significant academic scholarship, with both ethicists and social scientists debating the appropriate parameters for EEF ( Argyle et al, 2016 , Baldwin et al, 2014 , ESHRE Task Force on Ethics and Law, 2012 , Lockwood, 2011 , Mertes and Pennings, 2011 ), exploring the sociodemographic characteristics and motivations of its users ( Baldwin et al, 2018 , Inhorn et al, 2018a , Inhorn et al, 2018b , Gürtin et al, 2018a ), and seeking to identify best-practice guidelines to inform patient-centred care ( Inhorn et al, 2019 ), less attention has been paid to the ways in which clinics have been advertising and marketing their EEF services.…”