Communicating Chance of Success

Knowing what the chance is of having a baby as a result of treatment is of fundamental interest to those who consider MAR. But it can be difficult to understand information about success rates because it depends on how it is presented. Audits of clinic websites in the UK and Australia show that the quality of information about the chance of having a baby as a result of MAR is poor[2,3]. This is because most clinics define success as the chance of pregnancy per ET, which does not account for those who do not reach the ET stage or those who lose a pregnancy. Stating the proportion of women who have a baby after starting a stimulated cycle may allow a more realistic idea of what to expect. It may also be useful to quote the cumulative chance of having a baby after, e.g., three started stimulated cycles, including any frozen embryo transfers. This might help patients think of MAR as a series of treatments rather than a one off, which in turn may help them have more reasonable expectations and make them less likely to drop out of treatment if they are not successful the first time. Most importantly, since the woman’s age is the greatest determinant of success, success rate figures should be age specific.

Benefits and Risks of Adjuvants

Increasingly clinics offer a range of adjuvant therapies to improve the chance of pregnancy including assisted hatching, time-lapse imaging, embryo “glue,” sperm selection, immunotherapies, and others. For most adjuvants there is limited or no evidence about their effectiveness or potential risks[4,5]. At a minimum, clinic website information about adjuvants should include what is known about who they might benefit, how they might improve the chance of having a baby, what they cost, and what their risks are. In the absence of evidence, it should be stated that the possible benefits and risks of the adjuvant are unknown. While patients may be willing to try nonevidence-based treatments, their decisions should be well-informed.

Preconception Health Optimization

Evidence about the importance of intended parents optimizing their health before conception to improve their fertility, pregnancy health, and the health of the child at birth and in adulthood is growing[6]. Maternal and paternal obesity, poor nutrition, smoking, drug and alcohol use, and exposure to some environmental chemicals are all linked to poorer reproductive outcomes, including MAR outcomes. Patients seeking MAR are highly motivated to do what they can to improve their chance of having a baby and are likely to respond to preconception health optimization messages. Including information about the impact of lifestyle factors on MAR outcomes on clinic websites might prompt patients to commit to positive health behavior change and thereby improve their chance of conceiving and having a healthy baby. There are several emerging technology-based innovations to support positive health behaviors and preconception health optimization, including mobile phone apps and interactive web-based tools, which may help people seeking MAR[7,8]. Figure 8.1 shows an example of a web-based preconception health tool available on the “Your Fertility” website (www.yourfertility.org.au).

Figure 8.1 The Your Fertility preconception health self-assessment tool

Using Technology in Patient–Provider Communication

Electronic communication is convenient and time saving, and can facilitate patient–provider communication and information sharing. A survey among fertility patients in the United States showed that almost all were comfortable communicating electronically with the clinic and very few (<8%) had privacy concerns that prevented them from communicating electronically with their fertility doctor[9].

Written and verbal information about all aspects of MAR treatment provided by the clinic can be enhanced through an online forum where patients can access and communicate with clinic staff when they want and need to. In their analysis of the exchanges that occurred in one such forum, Aarts and colleagues[10] reported that most fertility patients gave more informational cues than emotional cues. The most frequently asked questions related to medication, factors associated with treatment success, and practical matters. The most common reason for asking questions online was that the patient had forgotten to ask these questions during their face-to-face visit. Almost all patients reported that the health professional had understood their question and had provided complete and reassuring responses. They also perceived the health professional who provided the responses as compassionate and respectful.

Using Technology to Provide Emotional Support

Some online interventions to support the emotional well-being of patients have been evaluated in RCTs, and findings suggest that they may be helpful and cost-effective complements to face-to-face counseling. Haemmerli and colleagues[11] evaluated a cognitive behavior coaching program for women and men in fertility treatment and found that the intervention significantly reduced the depression levels of clinically distressed and depressed patients. Cousineau and colleagues[12] tested a brief online education and support program for female infertility patients and reported that women in the intervention group felt significantly more informed about the medical decisions they made and had fewer infertility-related social concerns than women in the control group.

Using Technology to Monitor Quality of Care

Patient-reported experience measures (PREMs) are questionnaires assessing patients’ perceptions of their experience while receiving care and are indicators of quality of care[13]. PREMs are increasingly used in healthcare to monitor the quality of care from the patient’s perspective. Relational PREMs gauge patients’ experiences of their encounters with staff during treatment and functional PREMs measure their perceptions of more practical issues, such as the quality of clinic facilities. PREMs can be administered online and completed anonymously, and help clinics monitor the standard of care and take steps to improve care if indicated. An example of a relational PREM (the consultation and relational empathy measure) is shown in Figure 8.2.

Figure 8.2 The CARE PREM

Cancer Survivors

To preserve fertility potential (FP), people diagnosed with cancer in childhood or during their reproductive years can freeze reproductive material (gametes or ovarian or testicular tissue). However, to do this they need to be informed that this option is available. While studies indicate that cancer patients want and value information about FP options, there are many barriers for adequate oncofertility support, including lack of communication between cancer and fertility specialists[14,15]. Fertility clinics can support oncologists to discuss FP with their patients by providing information for health professionals on their websites and establishing a referral pathway that allows patients to be assessed by a fertility specialist and to access the FP option they choose with minimal delay to starting the cancer treatment they need.

Cancer patients want their future fertility addressed sensitively at the time of diagnosis and regard specialized websites and leaflets as the most helpful decision-support tools[16]. In their review of the availability and quality of information relating to female fertility in the context of cancer, de Man and colleagues[17] reported that fewer than half of fertility clinic websites included information about FP options. Hence, there is substantial scope for clinics to improve access to information about the impact of cancer treatment on fertility and the available FP options. The inclusion of a fertility-related decision aid may also help reduce decision regret[18]. Decision aids are used to help patients make decisions about complex health matters by providing information about the available options and their possible outcomes, and by clarifying personal values. They are designed to complement, rather than replace, discussions with health practitioners (see for example https://decisionaid.ohri.ca/).