O-090 Patients’ willingness and preferences about being counselled for the possibility of fertility treatment being unsuccessful
Authors: Sousa Leite M , Costa R , Figueiredo B , Gameiro S 
Published: June 2022

Study question

What are the factors associated with patients’ willingness to be counselled about the possibility of treatment being unsuccessful and their preferences towards it?

Summary answer

Nine in ten patients are willing to be counselled, with willingness being associated with stronger positive attitudes towards counselling, higher perceived benefit and lower barriers

What is known already

Around 57% of patients in the UK end all cycles of IVF/ICSI without having a live birth. Counselling patients on this outcome could reduce the psychosocial distress they experience when it actually happens and facilitate adjustment. Patients perceive they do not have opportunity to discuss the end of treatment with staff. Staff express concerns about such counselling ‘crushing patients’ optimism’ and compromising their engagement with treatment. Research shows 56% of patients are willing to plan in advance for an unsuccessful cycle, but little is known about their willingness and preferences to be counselled about the possibility of treatment being unsuccessful.

Study design, size, duration

Cross-sectional, mixed-methods. Bilingual (Portuguese/English), online survey, disseminated via social media (April-December 2021). Eligibility criteria include being aged 18 or older, waiting to/undergoing an IVF/ICSI cycle, or completing one within the last six months without achieving pregnancy. Out of 651 people accessing the survey, 451 consented to participate. From these, 100 did not complete 50% of survey questions, nine did not report on willingness to be counselled, and 342 completed the survey (75.8%, 338 women).

Participants/materials, setting, methods

Theoretically informed survey. Quantitative questions covered sociodemographic, fertility history and treatment, willingness (yes, no), preferences (by whom, when, why, how), and perceptions (Theory of Planned Behaviour predictors: attitudes, perceived norms, perceived behavioural control; Health belief Model predictors: perceived susceptibility, severity, benefits, barriers) towards being counselled about the possibility of treatment being unsuccessful. Qualitative questions gathered textual data on past experiences of counselling (by whom, topics addressed). Descriptive, logistic regressions, and thematic analysis were used.

Main results and the role of chance

Participants were on average 36 years old, most resident in Portugal (59.9%) and the UK (37.7%). The majority (97.1%) were in a relationship for 10 years, and 86.3% were childless. Participants were undergoing treatment for on average two years [SD=2.11, 0-12 years]. Most (71.8%) completed at least one cycle in the past, with 93.5% not having achieved a positive outcome. Almost all (93.3%) would like to be counselled for possible unsuccessful treatment. Reported preferences indicated that 78.3% wanted to be counselled by a counsellor/psychologist/psychiatrist; 73.3% before initiating the first cycle; mostly in case of a bad prognosis (79.4%), emotional distress (73.5%) or difficulties in accepting the possibility treatment being unsuccessful (71.2%); and mainly in an individual (M=6.37, SD=1.17; in 1-7 scale) or couple (M=6.34, SD=1.24; in 1-7 scale) session. Willingness was associated with stronger positive attitudes towards counselling (OR[95% CI]; 3.11[2.02-4.78]), higher perceived benefits of discussing psychosocial resources and strategies to cope with the loss (12.83[1.72-95.67]), and lower concerns about counselling triggering negative emotions (0.15[0.03-0.74]). Around one-third (34.9%) reported having been counselled, with thematic analysis showing patients were mostly counselled by their consultant and the main topic addressed was low prognosis, with emphasis being put on a future positive outcome.

Limitations, reasons for caution

Self-selected sample, mostly composed of female patients who had not yet achieved their parenthood goals. Small number of unwilling participants reduced statistical power. The main outcome variable was intentions and research shows intentions are only moderately associated with actual behaviour.

Wider implications of the findings

To meet patients’ preferences, fertility clinics should provide more opportunities for patients to discuss the possibility of their treatment being unsuccessful, both before and during treatment. Such counselling should reassure patients they can cope with any treatment outcome and signpost them to coping resources and support sources.

Trial registration number

Not applicable