Information and decision support needs: A survey of women interested in receiving planned oocyte cryopreservation information

Uptake of oocyte cryopreservation is rapidly increasing in high-income countries [1, 2]. In the United States (US), the annual number of cycles performed grew from around 2,700 in 2012 to 13,800 in 2018 [1]. There are also reports of increased uptake and consideration of the technique resulting from the COVID-19 pandemic [3‐6]. Oocyte cryopreservation was initially introduced as a fertility preservation method for patients needing gonadotoxic cancer treatment [7]. As data on the safety and efficacy of the technique improved, its experimental label was removed [8] and the option of ‘planned oocyte cryopreservation’ (POC) became more accessible for women concerned with future age-related infertility [9].

Planned oocyte cryopreservation decisions are complex, with several factors to consider including personal circumstances and values. For example, age at the time of POC is a key predictor of success, with live birth rates per thawed-oocyte-derived embryo transfer dropping from 43% for women aged <35 years at oocyte collection to 19% for those aged 41-42 years [1]. Multiple POC cycles may also be needed for a reasonable chance of a live birth from frozen oocytes [1]. Planned oocyte cryopreservation costs are substantial and pose a barrier for many women wanting to access the service [7, 10, 11]. In addition to the costs for retrieving and freezing oocytes, there are fees for ongoing storage and to utilise frozen oocytes in the future. Ovarian stimulation and oocyte collection expose women to small yet significant health risks. Complications are rare (0.4% of cycles) [12] but considered important amongst potential POC users [11, 13‐15]. Also, the risk of severe maternal morbidity from pregnancy (e.g. post-partum haemorrhage requiring blood transfusion, sepsis and cardiac failure) increases from age 30 years and is highest from 45 years onwards [16]. Finally, a 10-15 year follow up study reported that most (62%) POC patients had not accessed their frozen oocytes after storage [17]. Women who do not use their frozen oocytes may regret their decision to freeze and will eventually need to make a disposition decision. Those who do not wish or are unable to use their frozen oocytes [18‐21] may also face the dilemma of needing to make a disposition decision without having achieved their reproductive goals.

The limited evidence about POC decisions suggests that women may need more information and support to guide decision-making [22‐25]. For example, a US study of women who had frozen oocytes reported that 16% (n=33) had moderate to severe regret about pursuing the option, particularly when the information and emotional support they had received was perceived as inadequate for their decision [22]. A South Korean study of women who attended POC counselling also found that almost half their participants (n=40) had high decisional conflict after their visit [26]. Research performed to date on POC decisions have focussed on women who proceeded with the option [22‐24]. Data from a small sample of women who decided against POC (n=29) showed that few regretted their decision [27], however, more research is needed to understand the experiences of those who decide against it.

Availability of comprehensive and balanced POC information is limited. Most women are informed about POC from the media or online sources including fertility clinic websites [28‐30]. However, media information is often simplistic and incomplete [31], and online fertility clinic information reportedly lacks quality, transparency, and aims to persuade women towards POC [32‐35]. Some may also seek POC advice from primary care physicians such as general practitioners, who may feel inadequately informed to counsel their patients about the option [36] or, from fertility clinics which have commercial conflicts [37, 38].

Given the inadequacies in existing POC information and the apparent desire for decision support, this exploratory study aimed to identify the information and decision support needs of women interested in receiving POC information.

The number of eligible women who received the study invitation is unknown due to the recruitment methods used. Our participant information and consent form was clicked on 943 times. We cannot confirm if each click was by a unique and eligible person, therefore a precise response rate is unknown. Overall, 463 eligible women consented to participate. Of these, 352 (76%) started the survey and 290 (63%) completed all sections. Data from 332 (72%) women who completed at least the participant characteristics section of the survey were analysed (Fig. 1).

This novel study aimed to identify the information and decision support needs of reproductive aged women who were interested in receiving POC information. Overall, participants had gaps in their understanding of POC highlighting a need to improve awareness. The majority had considered POC but only about half had searched for information about it. For these participants, the predominant information source was fertility clinic websites. Few sought clinical advice. Many of the women who had considered POC had high decisional conflict, indicating a need for decision support. Those who reached a POC decision generally spent around two-years deciding. There was also strong support for providing women POC information by age 30 years. Preferred information providers were healthcare professionals or online resources.

Similar to previous reports of POC users, most participants were single, childless, university educated, and working in professional occupations [11, 22, 45, 46]. Unexpectedly, half had medical or other health-related training. Comparable data from similar studies are limited as this type of education is often not reported. One study of 150 POC users from the US and Israel showed 16% had a medical degree [47], however our cohorts are not directly comparable. It is possible that women working in these professions have a greater interest in POC as the challenges of career progression, particularly in the medical field, can often influence the timing of parenthood [48‐50], and hence consideration of use. Whilst career advancement is not considered a strong motivator for POC use [11], these women may still consider the option even if it does not translate to uptake.

Time to decision was typically around two-years for those who had decided about POC. This is consistent with data showing that most childless reproductive aged women remained undecided about POC after a two-year period [30]. The average age at POC in published data to date is mid-late 30s [1, 2, 11, 15]. A two-year contemplation period for women in their mid-30s or above is likely to reduce the benefit of POC and ultimately live birth outcomes [1]. Previous authors suggested that women become more engaged in POC decisions as they approach the end of their reproductive years [30]. However, most of our participants believed that women should be informed about the option by age 30 years suggesting a desire to engage in earlier decision-making. Some women regret not freezing their oocytes earlier [27, 51]. Therefore, informing women about POC at a younger age may support better pregnancy planning, and potentially timelier uptake. Nonetheless, barriers to access POC, such as costs and storage time limits [10, 11, 52], may still prevent women from using the technology at more ideal age (e.g. in their 20s or early 30s) [1, 2]. In addition, earlier consideration of POC may encourage more women to freeze oocytes which ultimately are never used [17]. Thus, it may also expose more women to unnecessary health risks, costs, and future decisions about the disposition of their oocytes. Women should be provided with comprehensive information at the time of considering POC to facilitate informed choice. This includes information about frozen oocyte usage rates and the disposition of unused oocytes.

Most participants believed healthcare professionals should provide POC information, demonstrating a need for clinical, evidence-based advice. Fertility specialists were the preferred source. However, if women want to engage in early education about POC, primary care physicians (e.g. general practitioners) may be best placed to initially discuss the option. Research into primary care physicians providing POC information is limited. However, these clinicians may find it challenging to discuss the topic and fertility more broadly, due to limited knowledge, appointment time constraints, and concerns about causing distress and appearing paternalistic or presumptuous towards their patients [36, 53, 54]. A small Australian study (n=72) reported that most primary care physicians wanted more information and training about POC, indicating a willingness to assist patients with these decisions [36]. This type of educational support could be provided by professional societies [36]. Although some patients may find it inappropriate for primary care physicians to provide unprompted fertility-related information [54], many others approve of them raising the topic [55]. To navigate these conversations, primary care physicians could ask their patients if they are interested in discussing their reproductive intentions. Suitable times for these conversations may be during general or reproductive health appointments [11, 56]. Also, despite most of our participants believing POC information should be provided by primary care physicians, few had consulted them consistent with previous data [56].

Over half our participants had searched for POC information mainly from fertility clinic websites. In addition, online information delivery was rated as the most useful method to support POC decisions. Together, this highlights the value of providing POC information online. Web-based materials are private, highly accessible, and do not require attending clinic appointments which usually incur costs and have restricted hours of access.

Also, our data suggests that some women make their decision (particularly against POC) without obtaining clinical advice. This is different to other health-related treatment decisions where clinicians are involved in the decision from the outset [57]. Specialist counselling is necessary for those who wish to proceed with POC or want personalised information to consider [58, 59]. But, for a subset of women who ultimately decide against POC, general information alone may be sufficient to inform their decision. In addition to receiving POC information from primary care physicians, an online resource providing evidence-based, unbiased information about POC and its alternatives, may support decision-making including whether to consult an IVF specialist.

Most participants who considered using POC had high decisional conflict, demonstrating the difficulty of this decision. Higher DCS scores are associated with poorer knowledge of options, greater decision regret, and decision delay [39, 60]. In our study, consulting an IVF specialist about POC was highly associated with lower decisional conflict. However, given many women have high decisional conflict even after receiving specialist counselling [26], there appears to be a need for additional support to supplement clinical advice. A Decision Aid for POC may reduce decisional conflict as demonstrated in other health areas [61]. These tools are used to support shared decision-making [62, 63] and are recommended by the European Society of Human Reproduction and Embryology for fertility preservation decisions [52]. There are Decision Aids for other elective procedures [61] including the use of fertility preservation for medical reasons [64, 65]. The International Patient Decision Aid Standards Collaboration [66] provide a framework which can be implemented to develop a Decision Aid for POC. Finally, we found no association between high decisional conflict and advanced age (>37 years) as demonstrated in prior research [26]. This may reflect population differences between the two studies.

Participants who decided against POC had higher decisional conflict than those who decided to freeze their oocytes. This may reflect a difference in the information resources used by the two groups. For instance, most women who chose to freeze their oocytes received specialist counselling, whilst only a few who decided against POC sought similar advice, and consequently may be less informed. It is possible that barriers to access POC, such as affordability [10, 11], could mean that some women decide POC is unfeasible early in the consideration process without conducting full investigations into the option.

Overall, participants were moderately informed about POC and age-related infertility. Low knowledge of these concepts was reported in the general population using a similar knowledge scale [14]. The difference in comprehension likely reflects our cohort’s interest in the topic and prior research performed by some participants. Main knowledge gaps related to POC procedure associated health risks, success rates, limitations to assessing oocyte quality, and whether time in storage reduced oocyte quality. In addition, we observed an association between higher knowledge score and lower decisional conflict. Together, this suggests that addressing these gaps in knowledge, through specialist counselling or other educational initiatives, may reduce POC decisional conflict. The provision of accurate, transparent, and accessible information about POC success rates is particularly important as IVF success rates are often overestimated [67‐69]. It is possible that some women may choose to defer their decision about POC because they misjudge its potential benefit at an older age, which could create unrealistic expectations about the technology when they return to their decision in the future.

This is the first study to our knowledge measuring decisional conflict and time to decision in a broad, community-based group of women who have considered using POC. It addresses a gap in evidence about the information and decision support needs of those who want to receive POC information. The generalisability of these findings may be limited, although the extent of these limitations is difficult to determine as data from a directly comparable group are not available. It is possible that women were more likely to participate in this study if they were actively considering POC or searching for information. Participants may also reflect women with higher decisional conflict than in the population. However, given the only other study reporting on POC decisional conflict also found that many women who received specialist counselling had high DCS scores [26], this may not be the case. Whilst we aimed to recruit women from the community who were interested in receiving POC information, we observed an unexpectedly high proportion of participants with medical or health-related education. It is possible these women are more likely to consider POC, but it may also reflect the recruitment methods used. In addition, we observed participant attrition (Fig. 1). Participants with a greater interest in POC may have been more likely to complete the survey. We were ethically obliged to use data from incomplete surveys as participants had spent time providing us their information and did not withdraw from the study. This has contributed to some missing data observed in our analysis, however, question completion rates were high (>82%) (Supplementary Table 2). Other limitations inherent to any cross-sectional survey are the use of self-reported data, and the relevancy of results over time particularly in the rapidly evolving field of POC. Our knowledge scale was designed in the absence of a relevant validated scale; hence it may not measure actual knowledge as intended. The scale aims to assess understanding of general concepts and does not consider nuances that may arise with individuals or changes to success rates over time.

Women interested in receiving POC information had gaps in their knowledge of the topic including its potential health risks and success rates. They also believed women should receive POC information by age 30 years, preferably by healthcare professionals or online resources. Most who had considered using POC had high decisional conflict demonstrating a need for decision support. Time to decision was typically around two-years which may impact the chances of a successful pregnancy from frozen oocytes in the future. There is a need for comprehensive and transparent information, and decision support to help women make informed and timely POC decisions. Primary care physicians and online resources may help to address women’s gaps in knowledge, reduce their decisional conflict, and encourage earlier consideration of POC.