The health belief and transtheoretical model were used to describe how women make decisions about fertility preservation (FP) and identify factors that predict their decisions. Methods: This is a two-year prospective study with 107 childless women aged 30-37. Women filled anonline survey assessing individual factors, intentions to do FP, variables of the health belief model, FP decisional stage and FP behaviour. Results: Womens intentions, desire and number of children wanted decreased, fertility knowledge and perceived susceptibility to infertility increased and perceived severity of infertility decreased. A low number of women progressed through the stages of the decision-making process. Only 14% reached a decision and all decided not to do FP. Women's baseline intentions to do FP predicted their decision. Conclusion: Women at the optimal age range to do FP (28-35 years) do not engage in decision-making about it, which reflects their initial low intentions to do FP. Women's decision about FP is influenced by their perceptions about the technique. Pratical implications: Women with a high desire for parenthood and within the optimal age range to do FP should receive accurate information about it and could benefit from prompts to engage in active decisionmaking about doing it.
STUDY QUESTION What are the perceptions of ESHRE members about the dissemination, implementation and impact of the first four ESHRE evidence-based guidelines to be published? SUMMARY ANSWER Around 30% of ESHRE members know and use the ESHRE evidence-based guidelines in their routine practice and this is perceived to result in better treatment, better screening/evaluation/diagnosis and better psychosocial and patient-centred care, with on average three in each four members who make changes perceiving that their patients benefit from it. WHAT IS KNOWN ALREADY ESHRE has been developing and disseminating evidence-based guidelines, aiming to improve the quality of fertility care across Europe. However, evidence has shown that guidelines dissemination is not enough to change practice at clinics, with implementation strategies that address local barriers to implementation being recommended. STUDY DESIGN, SIZE, DURATION A cross-sectional study based on an online survey was sent by email to all ESHRE members ( n = 7664) and advertised on ESHRE social media (20 February–3 April 2018). The survey was carried out to evaluate their perceptions about the dissemination, implementation and impact of the Management of Endometriosis (ENDO), Routine Psychosocial Care (RPC), Premature Ovarian Insufficiency (POI) and Recurrent Pregnancy Loss (RPL) ESHRE guidelines. PARTICIPANTS/MATERIALS, SETTING, METHODS The survey was advertised via the ESHRE website, social media and email to all ESHRE members. It assessed the dissemination (knowledge the guidelines were published, downloaded), implementation (using guidelines in daily practice, changed practice) and impact (perceived patient benefit, referred patients to the guidelines) of the guidelines, as well as their perceived implementability. Open questions assessed perceived changes in practice, barriers to and desired support for implementation. MAIN RESULTS AND THE ROLE OF CHANCE The final sample consisted of 658 participants (not possible to calculate response rate), with the majority being embryologists, biologists or geneticists ( n = 268, 40.7%), followed by clinicians ( n = 260, 39.5%), scientists ( n = 48, 7.3%), nurses or midwives ( n = 30, 4.6%), psychologists, counsellors or social workers ( n = 28, 4.3%) and others (e.g. medical student, lab manager, marketing, ethicist; n = 24, 3.6%). The majority knew that ESHRE published the guidelines (82.1% ENDO, 54.6% RPC, 56.6% POI, 59.4% RPL). From these, the majority downloaded it (65.9% ENDO, 52.4% RPC, 54.2% POI, 56.8% RPL), around one-third used it in their routine practice (41.7% ENDO, 29.5% RPC, 33.7% POI) and around one quarter made changes to their practice (30.7% ...
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.
Introduction: Many people undergo fertility treatment to have biological children, but around four in ten patients complete all treatment cycles without having the children they desire. This triggers intense grief from which patients report taking on average 2 years to recover. Fertility guidelines and regulators stress the need to support patients through this process, but there is a scarcity of evaluated interventions to this end and evidence about when and how to offer care is lacking. This study explored patients' and healthcare professionals' (HCPs) experiences of and views about provision of psychosocial care (to patients facing unsuccessful fertility treatment, i.e., care provided by a mental health professional to address the emotional, cognitive, behavioural, relational and social needs that patients have at this stage of treatment).Methods: Five qualitative online focus groups were conducted with Portuguese participants: three with patients waiting to initiate or undergoing their last cycle of in vitro fertilization/intracytoplasmic sperm injection or having completed it within the last 2 months without achieving a pregnancy and two with HCPs working at fertility clinics. Focus groups were recorded and transcribed verbatim, and data were analysed with Framework Analysis.Results: Thirteen patients and nine HCPs participated. Analysis resulted in 1293 codes, systematically organized into 13 categories, 4 themes and 1 metatheme. The latter showed high consensus about the need for psychosocial care for unsuccessful treatment, but perceived challenges in its implementation. Themes reflected (1) consensual demand for psychosocial care at all stages of treatment but particularly at the end, (2) high perceived acceptability of integrating preventive care initiated during treatment with early psychosocial care only for those patients who experience unsuccessful treatment, (3) perceived challenges of implementing
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