Discussing the possibility of fertility treatment being unsuccessful as part of routine care offered at clinics: patients’ experiences, willingness, and preferences

Abstract

STUDY QUESTION Are patients willing to discuss the possibility of treatment being unsuccessful as part of routine care offered at clinics, and what are the factors associated with this willingness? SUMMARY ANSWER Nine in every 10 patients are willing to discuss this possibility as part of routine care, with willingness being associated with higher perceived benefits, lower barriers, and stronger positive attitudes towards it. WHAT IS KNOWN ALREADY Fifty-eight percent of patients who complete up to three cycles of IVF/ICSI in the UK do not achieve a live birth. Offering psychosocial care for unsuccessful fertility treatment (PCUFT), defined as assistance and guidance on the implications of treatment being unsuccessful, could reduce the psychosocial distress patients experience when it happens, and promote positive adjustment to this loss. Research shows 56% of patients are willing to plan for an unsuccessful cycle, but little is known about their willingness and preferences towards discussing the possibility of definitive unsuccessful treatment. STUDY DESIGN, SIZE, DURATION The study was of cross-sectional design, comprising a theoretically driven and patient-centred bilingual (English, Portuguese) mixed-methods online survey. The survey was disseminated via social media (April 2021–January 2022). Eligibility criteria included being aged 18 or older, waiting to or undergoing an IVF/ICSI cycle, or having completed a cycle within the previous 6 months without achieving a pregnancy. Out of 651 people accessing the survey, 451 (69.3%) consented to participate. From these, 100 did not complete 50% of the survey questions, nine did not report on the primary outcome variable (willingness), and 342 completed the survey (completion rate 75.8%, 338 women). PARTICIPANTS/MATERIALS, SETTING, METHODS The survey was informed by the Health Belief Model (HBM) and Theory of Planned Behaviour (TPB). Quantitative questions covered sociodemographic characteristics and treatment history. Quantitative and qualitative questions gathered data on past experiences, willingness, and preferences (with whom, what, how and when) to receive PCUFT, as well as theory-informed factors hypothesized to be associated with patients’ willingness to receive it. Descriptive and inferential statistics were used on quantitative data about PCUFT experiences, willingness, and preferences, and thematic analysis was applied to textual data. Two logistic regressions were used to investigate the factors associated with patients’ willingness. MAIN RESULTS AND THE ROLE OF CHANCE Participants were, on average, 36 years old and most resided in Portugal (59.9%) and the UK (38.0%). The majority (97.1%) were in a relationship for around 10 years, and 86.3% were childless. Participants were undergoing treatment for, on average, 2 years [SD = 2.11, range: 0–12 years], with most (71.8%) having completed at least one IVF/ICSI cycle in the past, almost all (93.5%) without success. Around one-third (34.9%) reported having received PCUFT. Thematic analysis showed participants received it mainly from their consultant. The main topic discussed was patients’ low prognosis, with the emphasis being put on achieving a positive outcome. Almost all participants (93.3%) would like to receive PCUFT. Reported preferences indicated that 78.6% wanted to receive it from a psychologist/psychiatrist/counsellor, mostly in case of a bad prognosis (79.4%), emotional distress (73.5%), or difficulties in accepting the possibility of treatment being unsuccessful (71.2%). The preferred time to receive PCUFT was before initiating the first cycle (73.3%), while the preferred format was in an individual (mean = 6.37, SD = 1.17; in 1–7 scale) or couple (mean = 6.34, SD = 1.24; in 1–7 scale) session. Thematic analysis showed participants would like PCUFT to provide an overview of treatment and all possible outcomes tailored to each patient’s circumstances and to encompass psychosocial support, mainly focused on coping strategies to process loss and sustain hope towards the future. Willingness to receive PCUFT was associated with higher perceived benefit of building psychosocial resources and coping strategies (odds ratios (ORs) 3.40, 95% CI 1.23–9.38), lower perceived barrier of triggering negative emotions (OR 0.49, 95% CI 0.24–0.98), and stronger positive attitudes about PCUFT being beneficial and useful (OR 3.32, 95% CI 2.12–5.20). LIMITATIONS, REASONS FOR CAUTION Self-selected sample, mainly composed of female patients who had not yet achieved their parenthood goals. The small number of participants unwilling to receive PCUFT reduced statistical power. The primary outcome variable was intentions, and research shows a moderate association between intentions and actual behaviour. WIDER IMPLICATIONS OF THE FINDINGS Fertility clinics should provide patients with early opportunities to discuss the possibility of their treatment being unsuccessful as part of routine care. PCUFT should focus on minimizing suffering associated with grief and loss by reassuring patients they can cope with any treatment outcome, promoting coping resources, and signposting to additional support. STUDY FUNDING/COMPETING INTEREST(S) M.S.-L. holds a doctoral fellowship from the Portuguese Foundation for Science and Technology, I.P. [Fundação para a Ciência e a Tecnologia] (FCT; SFRH/BD/144429/2019). R.C. holds a post-doctoral fellowship supported by the European Social Fund (ESF) and FCT (SFRH/BPD/117597/2016). The EPIUnit, ITR and CIPsi (PSI/01662) are also financed by FCT through the Portuguese State Budget, in the scope of the projects UIDB/04750/2020, LA/P/0064/2020 and UIDB/PSI/01662/2020, respectively. Dr Gameiro reports consultancy fees from TMRW Life Sciences and Ferring Pharmaceuticals A/S, speaker fees from Access Fertility, SONA-Pharm LLC, Meridiano Congress International and Gedeon Richter, grants from Merck Serono Ltd, an affiliate of Merck KgaA, Darmstadt, Germany. TRIAL REGISTRATION NUMBER N/A.

Driving factors in treatment decision-making of patients seeking medical assistance for infertility: a systematic review

“…However, in a recent study of patients experiencing unsuccessful IVF/ICSI cycles, 93.3% expressed a desire for psychosocial care, particularly when faced with a poor prognosis. Participants emphasized the need for personalized information on treatment options, outcomes, and comprehensive psychosocial support, as well as addressing coping strategies to process loss and sustain hope toward the future ( Sousa-Leite et al , 2023 ).…”

Fertility clinics have a duty of care towards patients who do not have children with treatment

“…Conversations about negative treatment outcomes are hard for patients and staff alike. Both fear these may trigger anxiety in patients, which has been confirmed by research ( Devroe et al , 2022 ), and a minority feel it makes no sense to discuss something that may not happen ( Harrison et al , 2021 ; Sousa-Leite et al , 2023 ). Qualitative evidence indicates HCPs find it hard to use personal discretion in deciding with whom and when to have end-of-treatment conversations and feel unprepared to introduce such sensitive topics and manage the difficult emotions these may trigger (especially anger, but also sadness, disappointment, frustration) ( Simpson and Bor, 2001 ; Grill, 2015 ; Leone et al , 2017 ).…”

“…For detailed information of what patients expect from these discussions, see Sousa-Leite et al (2023) .…”

“…In sum, we advise HCPs to systematically build in moments for patients to consider all possible treatment outcomes and to actively reflect on what is best for them moving forward. Currently, there is a discrepancy between the number of patients who report having properly discussed end of treatment with their HCPs and the number of patients who end treatment without a baby, meaning that many patients who needed and could have benefited from this conversation did not receive it ( Sousa-Leite et al , 2023 ). Even though some patients may not have the mental room to engage in these conversations when HCPs want to approach them, it is necessary that HCPs systematically signal they are available to have this conversation whenever patients are ready.…”

“…Multiple recent primary and evidence-synthesis studies clearly indicate patients are open to and value information about the negative aspects of treatment ( Peddie et al , 2004 ; Dancet et al , 2010 ; Harrison et al , 2021 , 2022 ; Sousa-Leite et al , 2023 ). They want to have a realist overview of what their treatment journey will look like before they embark on it, including of the probability of negative outcomes, so that they can better prepare by developing coping skills, anticipating decisions they may have to make, and knowing how to access support when needed ( Aarts et al , 2011 ; Harrison et al , 2021 ; Sousa-Leite et al , 2023 ). A very recent survey showed that nine in ten patients reported being willing to discuss the possibility and implications of their treatment not working while they are still undergoing treatment, with seven in ten stating the best time to do so is before doing their first cycle.…”