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Background: Besides hard medical outcomes in patients with inherited cardiac conditions (ICC). it is crucial to focus on the patient-reported outcomes (PRO) as well. These patients may have a disease-specific need due to ICC-related distress concerning family members and reproductive choices. We evaluated which PRO scales are currently used in cardiogenetics. Methods: From three datasets (PubMed, PsychINFO, and Web of Science), eligible studies published between 2008-2022 were selected as described in the review protocol (PROSPERO 2021 CRD42021271384). The quality of studies was assessed (https://pubmed.ncbi.nlm.nih.gov/27082055 ) and analyzed for the primary outcome variable of patient-reported outcomes. Results: Eighteen out of 232 articles were selected for data extraction; 9 studies used a cross-sectional design, and population characteristics and outcome measures varied. The risk of bias was high or unclear in 77% of the studies. All studies mainly used two questionnaires in combination or alone: the short form of medical outcomes survey (SF-36), a generic PROM that reports on health status and the Hospital Anxiety and Depression Scale (HADS), a standard measure of psychological well-being. Thirteen studies using SF-36 showed lower scores on the mental health component in patients with ICC versus population norms. Ten studies using HADS showed a prevalence of clinically significant anxiety (17-47%) and depression (8.3% to 28%) which are higher than the population norm (8.3% and 6.3%). Conclusion: Our results from only a few published studies indicate that although psychological morbidity in ICC patients is high, measurements are non-specific, variable, and generic and address overall health, instead of addressing factors specific to ICC, such as heritability. We propose to develop a disease-specific PROM for cardiogenetics to evaluate the heritability factor in patients with ICC to implement in the care pathway and optimize patient-centred care.

P-396 Family functioning and psychological well-being of 5- to 6-yearold singletons born after preimplantation genetic diagnosis; a prospective case-controlled matched study C.Winter1, F. van Acker2, M. Bonduelle1, S. Desmyttere1, J. Nekkebroeck1 1UZ Brussel, Centre for Medical Genetics, Brussels, Belgium 2Open Universiteit Heerlen, Faculty of Psychology, Heerlen, The Netherlands Study question: As preimplantation genetic diagnosis (PGD) is applied to families who might have suffered traumatic family histories, questions remain about the psychological development of their offspring. We investigated if PGD preschoolers differ in their social-emotional development from children born after intracytoplasmic sperm injection (ICSI) and spontaneous conception (SC). Summary answer: The psychological development of PGD children was not different from those of children born after ICSI and SC, nor in the perceptions of the children themselves neither by the reports of their parents. The amount of parental stress concerning family life is more prominent by SC mothers than PGD/ICSI families. What is known already: Literature about the broad psychological development of children at preschool age born after PGD is scarce. One study showed that, at toddler age PGD/PGS (preimplantation genetic screening) mothers reported less behavioral problems. Two other studies found that PGD/PGS parents experienced lower stress levels in comparison to controls. As PGD patients have a different indication than PGS couples, long term follow-up of their children is needed. Study design, size, duration: Between April 2011 and May 2013, the psychological development of 47 5- to 6-year-old PGD singletons was assessed in a prospective case-controlled matched follow-up study. ICSI and SC children were matched according to age, gender, educational level of mother and birth order. ART group assessments were mostly blinded. Participants/materials, setting, methods: 47 PGD singletons, 50 ICSI and 55 SC children were examined with the family relations test (FRT) measuring the perceptions of family interactions of the children themselves. PGD/ICSI children were tested in the UZ Brussel. Both parents completed the Child Behavior Checklist (CBCL) and the Parenting Stress Index (PSI). Main results and the role of chance: No group differences were detected concerning children's positive, negative and global perceptions on their mothers and fathers using the FRT. Fathers of the three groups did not differ significantly in their stress experience (PSI/NOSI) as opposed to mothers (p = .004; ?2 = .086). Post hoc Tukey tests (p = .001) confirmed that mothers of SC children (M = 313.37, SD = 10.16) reported significantly more stress than PGD (M = 265.31, SD = 10.32) and ICSI mothers (M = 275.71, SD = 9.98). The CBCL data did not reveal any group differences regarding behavioral problems. Limitations, reason for caution: Given the fact that we assessed a relatively small group of Caucasian Dutch speaking PGD singletons our data might not be generalizable. These are the first data of a broad evaluation of PGD preschoolers and their families; it will be interesting to report on the whole data set. Wider implications of the findings: Our results confirm those of the few other studies. PGD families do not seem to differ in their daily interactions/perceptions from SC or ICSI families. Furthermore our findings suggest that at preschool age PGD mothers are rather more relaxed than SC mothers. On the long term, when PGD parents might develop their own diseases or deteriorations, it might be useful to comprehend how these families interact and how they perceive each other. Study funding/competing interest(s): Funding by University(ies), Funding by hospital/clinic(s), Funding by national/international organization(s), Funding by commercial/corporate company(ies), This study was funded by the Onderzoeksraad (OZR) of the Vrije Universiteit Brussel and the FWO (Fonds Wetenschappelijk Onderzoek) and Wetenschappelijk Fonds Willy Gepts. The UZ Brussel and the Centre for Medical Genetics have received many educational grants for organizing the data collection from IBSA, Ferring, Organon, Shering-Plough, Merck, Merck Belgium. M. Bonduelle has received consultancy and speaker's fees from Organon, Serono Symposia, Merck. Trial registration number: No clinical trial.

Introduction: With the trend toward delaying pregnancy into the late 30s, an increasing number of women depend on oocyte donation to attain motherhood. Donors are typically young and healthy, but studies investigating the long-term medical and psychological impact of donating oocytes are scarce. We present here the results of a study that we conducted to assess fecundity and psychological well-being of women who have been oocyte donors. Material and Methods: We developed a standardized telephone questionnaire to evaluate reproductive health in donors before and after oocyte donation. The questionnaire had been constructed so that it would elicit responses that produce qualitative and quantitative data regarding the donation experience. A correlation analysis was performed between demographic features, the perceived physical and psychosocial burden of the procedure, possible regret, the intention to repeat oocyte donation and recommendation. All analyses were performed in SPSS 19.0 and by using the X2-test for categorical variables and the Kruskal-Wallis or Mann-Whitney U-test for continuous variables. Results: Contact details were available from 307 oocyte donors who had undergone treatment at UZ Brussel between 1999 and 2010. Of those, 205 could be contacted by telephone and 194 (94.6%) consented to participate in the study. The average follow-up since the first donation was 3.7 years (SD ± 2.1 y). In four out of 243 oocyte donation cycles (1.6%), a complication was recorded: three cycles (0.9%) resulted in a severe ovarian hyperstimulation syndrome (OHSS) requiring hospital admission and there was one case (0.3%) of ovarian torsion. Sixty donors (30.9%) reported active attempts to conceive after the donation procedure, six (10%) of whom did not conceive within a period of 12 months: three women eventually conceived spontaneously within 18 months, whereas the other three conceived after fertility treatment. 3.6% of the donors expressed regret because of discomfort or medical complications after the procedure, while 86.6% of the respondents would recommend oocyte donation to others. A positive recommendation was significantly correlated with the absence of physical complications (p = 0.01), with whether relatives and friends were informed of the donation (p = 0.025) and with the perception of having received adequate counseling before the donation (p = 0.01). Conclusion: Our study shows that oocyte donation does not affect fecundity of oocyte donors and provide reassurance for prospective oocyte donors with regard to the medical and psychosocial consequences of the procedure. Although side effects are usually mild and complications are rare, they do have an important impact on the donors' attitude towards egg donation. These findings underline the importance of safe ovarian stimulation protocols and egg retrieval procedures in oocyte donors, to minimize the treatment burden and the risk of complications because these significantly affect women's attitudes towards further oocyte donations.

background: Although cryopreservation of semen is a routine procedure for preserving male gametes, an efficient method of preserving fertility through oocyte freezing has only recently become available for women. In view of the limited female reproductive lifespan, oocyte freezing can now offer women some protection against the decline in fertility with aging. methods: A survey was performed in Belgium among 1914 women of reproductive age (21-40 years) to assess public attitudes towards the phenomenon called 'social oocyte freezing'. Women were questioned on their awareness of the age-related fertility decline and their views and intentions towards considering undergoing oocyte cryopreservation. results: The electronic questionnaire was completed by 1049 women, giving a response rate of 55%, and 25 were excluded as they were incomplete/inconsistent. Our results demonstrate that 31.5% of respondents consider themselves as potential social oocyte freezers, of which 3.1% would definitely considerthe procedure. Just over half of the women (51.8%) would not consider the procedure while 16.7% indicated they had no opinion. Potential oocyte freezers are characterized by a higher number of desired children and more openness to oocyte donation. The decision to actually embark on such treatment would primarily depend on conditions, such as the procedure not affecting their natural fertility and the health of future children. conclusions: We conclude that a significant proportion of young women would consider safeguarding their reproductive potential or are at least open to the idea of social oocyte freezing. Key words: survey / cryopreservation / social oocyte freezing / attitudes / aging

Introduction As oocyte cryopreservation techniques are still considered experimental, the main professional bodies consider the non-medical use premature. However, fertility centres around the world have started to offer oocyte cryopresevation to healthy and fertile women. The major concerns are that women will deliberately postpone pregnancy, give priority to their careers and that it will offer a false sense of security that one is optimizing her chances of motherhood. With this study we try to construct the profile of the women opting for oocyte freezing for non-medical reasons. Materials and methods The Centre for Reproductive Medicine (UZBrussel) received 15 candidates who all underwent a semi-structured interview to asses their motivation to apply for this treatment and to evaluate whether they were aware of the risks and limitations of the treatment. Results The average age of the women at intake was 38.3 years (± 2.7, range 34-43). All women had a high educational level and stated they could financially afford the treatment. They all had had partner-relationships in the past and did not make their desire for a child concrete because they did not found the 'right' partner. 14 women were single and 1 had a recently ongoing relation. For half of them their latest relation ended only six months ago (45,5% n=5). The majority discovered the possibility to freeze oocytes because the topic appeared in the media and/or by searching on the internet (73.4%). Before they discovered this possibility; adoption or staying childless were considered as alternatives by 26.7% of the candidates and becoming a single mother with the use of donor sperm by 46.7% of the candidates. However, except for one woman who had just engaged in a relationship, actively keep on searching for 'mister right' was the only valuable option. The main reasons to opt for oocyte freezing were; 'taking the pressure of the search for the right partner' (53.3%), 'giving a future relationship more time to blossom before bringing upthe subject of child-desire' (26.7%) and for 33.3% it meant an 'assurance against future infertility'. All 15 candidates had shared their intentions with their entourage and none of them felt discouraged by their entourage to undergo this treatment. The financial costs (53.3%) and the use of hormones (26.7%) were considered as the main disadvantages of the treatment. However, all of them accepted they had to undergo a fertility treatment while being healthy/fertile and were even willing to repeat the treatment on average 2.14 (±0.36) times. The average age women thought of using their frozen oocytes was 43.4 years (±2.03). If they would find a suitable partner most of them want to try to become pregnant spontaneously, than perform IVF with fresh material and in last instance, use their frozen oocytes. If they would not need their oocytes 46.7% would donate them for scientific research, 13.3% would donate them to another woman, 26.7% was unsure about their destination. Conclusions Although candidateswere highly educated and had been preoccupied with their careers 'not finding a suitable partner' as opposed to 'career achievements' was considered as the explanatory factor for their childlessness. Simultaneous to opting for oocyte freezing all women had engaged in an active search for the 'right' partner. The recent awareness of the possibility to freeze oocytes, the advanced age of certain women and the recent break-up of a relation were the pivotal events to opt for this treatment whereby women tried to buy a little biological time well aware that there is no guarantee of childbearing. Moreover, frozen oocytes were considered as very precious goods since even if they would meet 'mister right' in the near future they would only use the frozen oocytes in last instance, after having tried to become pregnant spontaneously. These findings can add to the formulation of guidelines for counselling for this very specific population.

Introduction The decline in fertility in many western societies go together with a trend to delay motherhood until later in life. Postponement confronts women with the age related decrease in fertility. Today, women foreseeing motherhood at a more advanced age can stop their biological clock through oocyte cryopreservation. This study also aimed to characterize women that may potentially undergo social oocyte freezing. Materials and Methods An electronic survey was completed by 1024 women living in Belgium in June 2009. The questionnaire was mailed to women representative of all social classes, geographic locations within the country and aged between 21 and 40 years, representing the age group for potential oocyte freezers. Prior to the administration of the questionnaire, women received an informative text on oocyte cryopreservation. Women were informed about the possible use of the technique for medical and social reasons the associated risks, side effects and experimental state of the technique. A number of statements were formulated to assess the attitudes towards various aspects of oocyte freezing. The respondents were asked to indicate on a 5-point scale to what extent each attitude applied to them. In total 1049 women out of 1914 filled out the questionnaire leading to a response rate of 55%. Another 25 cases were excluded because of an inconsistent or incomplete answering pattern. Results 3.1% (n?=?32) of the 1.024 women answered 'yes' to the question whether they would consider to freeze their oocytes. 28.4% (n?=?291) answered 'maybe', 16.7% (n?=?171) stated they 'do not know/have no idea' and half of the women answered 'no' (51.8%; n?=?530). In order to simplify the further analyses, the sample was split up into three groups; 'potential freezers' (answered 'yes' or 'maybe'), the 'doubtful group' and the 'non-freezers'. Potential freezers are more likely to be younger and less often married (23.5% versus 60.9%) or in a cohabiting relationship (31.9% versus 52.4%) when compared to the non-freezers or doubtful group. Potential freezers are also less likely to already have children as compared to non freezers (22.4% vs 64%) (p?Conclusions This is the first study that has investigated attitudes towards social oocyte freezing in a large group of women of reproductive age. Only a small proportion of women considers to cryopreserve their oocytes, however another 25% state they would maybe consider to undergo such a procedure. This survey also indicates that also women at a young reproductive age would consider the procedure and that potential oocyte freezers would be more inclined to donote if the stored oocytes are no longer needed.

Introduction: PGD (Preimplantation Genetic Diagnosis) combined with HLA (Human Leukocyte Antigen) matching is one of the recent applications in reproductive medicine which is used to select HLA compatible embryos in order to cure a severely affected sibling with a transplantation using haematopoietic stem cells from the newborn umbilical cord blood. PGD-HLA emerges numerous ethical and psychological questions. Materials and methods: The number of children born after PGD-HLA is very scarce. In order to evaluate the psychological well-being of the child conceived after PGD-HLA, we visited 3 families spread over Europe and interviewed them about the initial motives to opt for this treatment, how the pregnancy/ treatment was experienced, the openness about this project towards family, friends and the PGD-HLA conceived child and how the PGD-HLA conceived child is experienced by the parents and sibling(s). The degree of contentment about the guidance of the fertility centre before, during and after the treatment was also addressed. Results: All three children were too young (between 18-24 months) to participate in the interview. The parents informed the broader social circle about their project, the sibling(s) were also very aware of the fact that the youngest sibling is a compatible donor. In 2/3 of the families the PGD-HLA children will be informed about the nature of their conception once they start asking questions or can understand. One of the PGD-HLA children was born two weeks after his ill sibling deceased. In this family the PGD-HLA child was the only living child in the family. Because of this reason and because of the different socio-cultural background (Muslims) of this family they did not see the need to inform the child about the motives for his conception. In the two other cases additional bone marrow transplantations were necessary to cure the affected sibling. All parents stated they had had the desire to have another child and the PGD-HLA child was not only conceived to be the donor for his brother or sister. Moreover, all three children seemed very well integrated in their families and were raised and loved in the same way as their sibling(s) according to the parents. The mothers, told that any problems or inconveniences during the treatment/pregnancy faded as compared to what their ill child had to suffer and in one case the ill child was worried about the well-being of the PGD-HLA conceived sibling because additional transplants were necessary an it did not want her PGD-HLA sibling to suffer for her. All three families were content with the guidance/treatment from the hospital. Even the couple that had lost the child before the PGD-HLA conceived child was born was satisfied about the services of the centre since they were pregnant after the first attempt. Conclusion: It is impossible to make solid conclusions on the basis of only 3 follow-up interviews. In the future, assessments of these children and their families on the basis of a multi-method approach (interviews, questionnaires, formal childassessment) are recommended. All 3 families had their own particular story introducing many psychological issues that can only be addressed in time. It is clear that with the birth of a PGD-HLA conceived child the medical issues and the coexisting psychological issues are not solved and a long journey with an insecure outcome seems to be ahead. In general, the PGD-HLA treatment did not seemed to adversely affect the psychological well-being of these 3 children so conceived.

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