Sexual dysfunction and fertility-related distress in young adults with cancer over 5 years following diagnosis: study protocol of the Fex-Can Cohort study.

BACKGROUND: There is a lack of firm knowledge regarding sexual problems and fertility-related distress in young adults following a diagnosis with cancer. Establishing such understanding is essential to identify patients in need of specific support and to develop cancer care accordingly. This study protocol describes the Fex-Can Cohort study, a population-based prospective cohort study investigating sexual dysfunction and fertility-related distress in young adults diagnosed with cancer in Sweden. The primary objective of the study is to determine the prevalence and predictors of sexual dysfunction and fertility-related distress following a cancer diagnosis in young adulthood compared to prevalence rates for the general population. Further aims are to investigate the trajectories of these issues over time, the co-existence between sexual dysfunction and fertility-related distress, and the relation between these issues and body image, anxiety and depression, health-related quality of life, self-efficacy related to sexuality and fertility, and fertility-related knowledge. METHODS: Participants in the Fex-Can Cohort will be identified via the Swedish National Quality Registries for Brain Tumors, Breast Cancer, Gynecological Oncology, Lymphoma, and Testicular Cancer. All patients diagnosed at the ages of 18-39, during a period of 18 months, will be invited to participate. Established instruments will be used to measure sexual function (PROMIS SexFS), fertility-related distress (RCAC), body image (BIS), anxiety and depression (HADS), and health-related quality of life (QLQ-C30); Self-efficacy and fertility-related knowledge will be assessed by study-specific measures. The survey will be administered to participants at baseline (approximately 1.5 year after diagnosis) and at 3 and 5 years post-diagnosis. Registry data will be used to collect clinical variables. A comparison group of 2000 young adults will be drawn from the Swedish population register (SPAR) and subsequently approached with the same measures as the cancer group. DISCUSSION: The study will determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young men and women with cancer. The findings will form a basis for developing interventions to alleviate sexual problems and fertility-related distress in young adults with cancer in the short and long term. TRIAL REGISTRATION: This is an observational cohort study and clinical trial registration was therefore not obtained.

Sexual Dysfunction and Reproductive Concerns in Young Men Diagnosed With Testicular Cancer: An Observational Study.

INTRODUCTION: The survival rates for testicular cancer are excellent; still, there is a lack of knowledge regarding important survivorship issues, such as sexual dysfunction and reproductive concerns. AIM: The aim of this study was to investigate the prevalence and predictors of sexual dysfunction and reproductive concerns and the potential association between these issues in young men ∼2 years after a diagnosis of testicular cancer. METHODS: Data were collected from 111 men (response rate = 50%) diagnosed with testicular cancer at age 16-39. Patients were identified via the Swedish National Quality Registry for Testicular Cancer and approached with a survey, including standardized measures of sexual function, reproductive concerns, body image, and health-related quality of life. The survey was sent to participants approximately 2 years after their cancer diagnosis. Clinical variables were collected from the registry. Predictors were identified by multivariable linear regression analyses. MAIN OUTCOME MEASURES: The main outcomes were sexual function, assessed with the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measure version 2.0, and reproductive concerns, assessed with the Reproductive Concerns After Cancer scale. RESULTS: Sexual dysfunction was reported by 26% of men, and a high level of reproductive concerns was reported by 28%. Lower satisfaction with sex life was associated with older age (ß = -0.41), negative body image (ß = -0.42), not having a partner (ß = 4.8), and dissatisfaction with sex life before cancer (ß = 8.31). Negative body image was associated with reproductive concerns in the dimensions of fertility potential (ß = 0.06), partner disclosure (ß = 0.08), and child's health (ß = 0.07), whereas having had fertility preservation predicted higher levels of concerns with regard to personal health (ß = 0.52) and achieving pregnancy (ß = 0.53). Clinical variables did not predict either sexual function or reproductive concerns. CLINICAL IMPLICATIONS: Our results show that the majority of young men diagnosed with testicular cancer do not report sexual dysfunction or reproductive concerns 2 years after diagnosis. A sizeable minority, however, does report dysfunction or reproductive concerns, which should be recognized in the follow-up care of this population. STRENGTHS & LIMITATIONS: A strength of the study is the use of high-quality registry data and validated instruments. The lack of Swedish norms for sexual function and reproductive concerns is a possible limitation. CONCLUSION: A subgroup of young men treated for testicular cancer report sexual dysfunction or reproductive concerns approximately 2 years after diagnosis. Factors associated with these issues seem to mainly be psychological, rather than medical, nature. Ljungman L, Eriksson LE, Flynn KE, et al. Sexual Dysfunction and Reproductive Concerns in Young Men Diagnosed With Testicular Cancer: An Observational Study. J Sex Med 2019;16:1049-1059.

A web-based psycho-educational intervention (Fex-Can) targeting sexual dysfunction and fertility-related distress in young adults with cancer: study protocol of a randomized controlled trial.

BACKGROUND: This study protocol describes the clinical trial of the Fex-Can intervention, a web-based self-help program targeting sexual dysfunction and fertility-related distress. The psycho-educational intervention has been developed in collaboration with young patients with cancer and shown to be feasible. The primary objective is to determine whether the Fex-Can intervention, provided in addition to standard care, is superior to standard care in terms of reduction of sexual dysfunction and fertility-related distress directly after end of the 12-week program. The trial also aims to determine whether the intervention has an effect on the secondary outcomes including health-related quality of life, anxiety, depression, body image, fertility knowledge, and self-efficacy related to sexuality and fertility. METHODS: The trial has an randomized clinical trial (RCT) design with two parallel arms. The active groups receive either the version of the Fex-Can intervention targeting sexual problems or the version targeting fertility-related distress. Control groups receive standard care. Primary outcomes will be sexual function assessed with the Patient-Reported Outcomes Measurement Information System® Sexual Function and Satisfaction measure version 2.0 (SexFS) and fertility-related distress assessed with the Reproductive Concerns After Cancer scale (RCAC). The effect of the intervention will be evaluated directly after end of the program. Primary and secondary outcomes will also be assessed at the short- (12 weeks after end of program) and long-term (20 and 44 months after end of program) follow-up. At least 64 completers will be needed in each arm (total n = 256) to achieve adequate statistical power in the analyses. In order to increase the understanding of how the intervention brings about a possible change, semi-structured interviews will additionally be conducted with a purposeful sample shortly after completion of the intervention. DISCUSSION: If the Fex-Can intervention proves to be efficacious the necessary steps will be taken to implement it in routine care for young adults diagnosed with cancer. Healthcare could thereby be provided with an easily accessible, cost-effective intervention to offer to young adults suffering from fertility-related distress or sexual problems. TRIAL REGISTRATION: ISRCTN36621459 . Registered 25 January 2016.

Survey shows that Swedish healthcare professionals have a positive attitude towards surrogacy but the health of the child is a concern.

AIM: In February 2016, Sweden upheld its ban on surrogacy following a Government enquiry. This survey investigated attitudes towards surrogacy among primary health professionals working with children and their experiences of working with families following surrogacy abroad. METHODS: From April to November 2016, nurses, physicians and psychologist working in primary child health care in four counties in Sweden were invited to participate in a cross-sectional online survey about surrogacy. RESULTS: The mean age of the 208 participants was 49.2 years (range 27-68) and nearly 91% were women. Approximately 60% supported legalised surrogacy. Wanting a conscience clause to be introduced in Sweden was associated with not supporting surrogacy for any groups, while personal experiences of infertility and clinical experiences with families following surrogacy were associated with positive attitudes towards surrogacy for heterosexual couples. The majority (64%) disagreed that surrogate children were as healthy as other children, and many believed that they risked worse mental health (21%) and social stigmatisation (21%). CONCLUSION: We found that 60% supported legalised surrogacy, but many expressed concerns about the children's health and greater knowledge about the medical and psychosocial consequences of surrogacy is needed.

Threatened fertility: A longitudinal study exploring experiences of fertility and having children after cancer treatment.

Infertility is a recognised potential sequel of cancer treatment which impacts negatively on the quality of survival. The aim of this study was to explore how men and women experience the threat of infertility by cancer treatment and individuals' thoughts about having children after cancer during the first 2 years following diagnosis. Nine women and seven men (aged 24-41) participated in two interviews in this longitudinal interview study, after the initiation of cancer treatment and 2 years thereafter. The interviews focused on participants' thoughts and feelings about threatened fertility and having children. The interviews were analysed with qualitative content analysis with a particular focus on identifying experiences over time. The Traits-Desires-Intentions model was used to reflect upon the study findings. The analysis resulted in the identification of four themes: Continue calmly on chosen path, Abandoning plans for children, Avoiding the subject of fertility and Struggling towards life goals. The results emphasise the need to offer individualised fertility-related treatment communication and counselling, both at the time of cancer diagnosis and also in connection with follow-up care. Appropriate fertility-related communication should be included in young cancer patients' survivor care plans.

Physicians' self-reported practice behaviour regarding fertility-related discussions in paediatric oncology in Sweden.

OBJECTIVE: The aim of this study was to investigate practice behaviours of Swedish physicians with regard to discussing the impact of cancer treatment on fertility with paediatric oncology patients and their parents, and to identify factors associated with such discussions. METHODS: A cross-sectional survey study was conducted targeting all physicians in Sweden working in paediatric oncology care settings. Participants responded to a questionnaire measuring practice behaviour, attitudes, barriers, and confidence in knowledge. Multivariable logistic regression was used to determine factors associated with seldom discussing fertility. RESULTS: More than half of the physicians routinely talked with their patients/parents about the treatment's potential impact on fertility (male patients: 62%; female patients: 57%; P = 0.570). Factors associated with less frequently discussing fertility with patients/parents were working at a non-university hospital (male patients: OR 11.49, CI 1.98-66.67; female patients: OR 33.18, CI 4.06-271.07), concerns that the topic would cause worry (male patients: OR 8.23, CI 1.48-45.89; female patients: OR 12.38, CI 1.90-80.70), and perceiving the parents as anxious (male patients: OR 7.18, CI 1.20-42.85; female patients: OR 11.65, CI 1.32-103.17). CONCLUSIONS: Based on our findings, we recommend structured training in how to communicate about fertility issues in stressful situations, which in turn might increase fertility-related discussions in paediatric oncology.

Oncologists and hematologists' perceptions of fertility-related communication - a nationwide survey.

BACKGROUND: Despite the negative impacts of several cancer treatments on fertility, many patients do not recall having fertility-related discussions with their physicians. This study was conducted to identify those factors related to physicians' discussing the treatment impacts on fertility with cancer patients of reproductive age. MATERIAL AND METHODS: In this nationwide survey of cancer care physicians (n = 329, response rate 55%), oncologists and hematologists (mainly) completed a questionnaire on practice behavior, barriers, attitudes and confidence in knowledge regarding treatment-related fertility risks. Logistic regression analyses were conducted to identify factors associated with not routinely discussing fertility issues with patients. RESULTS: Most of the physicians agreed that they were responsible for discussing fertility issues with patients of reproductive age (91%), but approximately 30% did not do so regularly. Those factors decreasing the likelihood of discussion were: patient already had children (female/male OR 3.0/6.9), high workload (OR 3.3/4.8), seeing <5 female/male patients of reproductive age weekly (OR 3.2/3.4) and access to a reproduction clinic (OR 5.2/4.2). CONCLUSIONS: Most Swedish oncologists and hematologists regularly discuss impact of treatment on fertility with their patients. Those factors having a negative impact on fertility discussions may guide targeted organizational and educational efforts to further improve fertility-related communication in cancer care.

Attitudes about donor information differ greatly between IVF couples using their own gametes and those receiving or donating oocytes or sperm.

OBJECTIVE: The objective of the study is to examine attitudes towards aspects of donation treatment based on a national Swedish sample of gamete donors and couples undergoing assisted reproductive techniques (ART). METHODS: The present study was part of the Swedish study on gamete donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. The sample comprised 164 oocyte donors, 89 sperm donors, 251 people treated with their own gametes (in vitro fertilisation (IVF)), 213 oocyte recipients and 487 sperm recipients. A study-specific questionnaire was used. RESULTS: Attitudes vary widely between couples using their own gametes for IVF and those receiving or donating oocyte or sperm. The groups differed in their responses to most questions. Oocyte and sperm donors were more likely to agree with the statements "The donor should be informed if the donation results in a child" and "Offspring should receive some information about the donor during mature adolescence" than recipients of donated gametes and couples treated with their own gametes. CONCLUSION: Donor recipients, IVF couples and donors expressed different attitudes towards openness and information when it came to gamete donation, and those differences seemed to depend on their current reproductive situation.

It takes two to tango: information-sharing with offspring among heterosexual parents following identity-release sperm donation.

STUDY QUESTION: How do heterosexual parents reason about and experience information-sharing with offspring following identity-release sperm donation? SUMMARY ANSWER: Sharing information about using donor-conception with offspring is a complex process at several levels, with the parent's personal beliefs and the child's responses serving as driving or impeding forces for the information-sharing process. WHAT IS KNOWN ALREADY: The overall view of disclosure in gamete donation has shifted from secrecy to openness, but there is still uncertainty among parents concerning how and when to tell the child about his/her genetic origin. Most research on donor-conceived families has focused on donation treatment under anonymous or known circumstances, and there is a lack of studies in settings with identity-release donations. STUDY DESIGN, SIZE, DURATION: A qualitative interview study among 30 parents following identity-release sperm donation treatment. Interviews were conducted from February 2014 to March 2015. PARTICIPANTS/MATERIALS, SETTING, METHODS: The present study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD), including all fertility clinics performing gamete donation in Sweden. A sample of participants in the SSGD, consisting of heterosexual parents with children aged 7-8 years following identity-release sperm donation, participated in individual semi-structured interviews. MAIN RESULTS AND THE ROLE OF CHANCE: The analysis revealed one main theme: information-sharing is a process, with three subthemes; (i) the parent as process manager, (ii) the child as force or friction and (iii) being in the process. The first two subthemes were viewed as being linked together and their content served as driving or impeding forces in the information-sharing process. LIMITATIONS, REASONS FOR CAUTION: The fact that the study was performed within the context of the Swedish legislation on identity-release donation must be taken into consideration as regards transferability to other populations, as this may affect parents' reasoning concerning their information-sharing with the child. WIDER IMPLICATIONS OF THE FINDINGS: The present findings highlight the role of the donor-conceived child in the information-sharing process and may contribute to develop counselling that increases parents' confidence in handling children's reactions to information about their genetic origin. STUDY FUNDING/COMPETING INTERESTS: Financial support from The Swedish Research Council, The Family Planning Fund in Uppsala and Ferring Pharmaceuticals. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

Intentions and attitudes towards parenthood and fertility awareness among Chinese university students in Hong Kong: a comparison with Western samples.

STUDY QUESTION: What are the levels of awareness regarding female fertility and the intentions and attitudes towards parenthood among Chinese university students in Hong Kong compared with their counterparts in the West? SUMMARY ANSWER: Chinese university students in Hong Kong were similarly over-optimistic about the age-related fertility decline, although they were less inclined to have children and undergo fertility treatment compared with their Western counterparts. WHAT IS KNOWN ALREADY: Past studies of highly educated young adults in Europe and the USA have found that they are not sufficiently aware of the age-related decline in female fertility, and falsely believe that advanced reproductive treatments such as IVF will overcome fertility problems associated with age. Little is known about the perceptions of Chinese students in Hong Kong, a modernized Chinese city where the fertility rate is among the lowest in the world. STUDY DESIGN, SIZE, DURATION: An online cross-sectional survey of Chinese university students in Hong Kong was conducted in 2013. Results were compared with two similar studies in Sweden and the USA. PARTICIPANTS/MATERIALS, SETTING, METHODS: A total of 367 university students in Hong Kong (275 female, 92 male; mean age 23) responded to an e-mail invitation to participate in an online survey. Intentions and attitudes towards parenthood and awareness regarding female fertility were assessed using the Swedish Fertility Awareness Questionnaire. MAIN RESULTS AND THE ROLE OF CHANCE: Like their Western counterparts, a large proportion of Chinese university students underestimated the age-related fertility decline (92%) and overestimated the fertility treatment success rate (66%). However, they were less inclined to have children, were more aware of and less concerned with infertility and were less motivated to seek solutions in the event of a fertility problem. These comparisons were significant at P < 0.05. LIMITATIONS, REASONS FOR CAUTION: Self-selection bias was inevitable in the questionnaire survey, and the anonymous nature of the survey did not permit the collection of characteristics of non-responders. International comparisons warrant caution because the Hong Kong sample was older than the US sample (mean age 20), but not older than the Sweden sample (mean age 24). WIDER IMPLICATION OF FINDINGS: While this study was consistent with past Western studies on the lack of fertility awareness among highly educated young people, the findings reveal significant cultural differences in family planning and responses to infertility between Asia and the West.

'Will I be able to have a baby?' Results from online focus group discussions with childhood cancer survivors in Sweden.

STUDY QUESTION: What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile? SUMMARY ANSWER: The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future. WHAT IS KNOWN ALREADY: Many childhood cancer survivors want to have children and worry about possible infertility. STUDY DESIGN, SIZE, DURATION: For this qualitative study with a cross-sectional design, data were collected through 39 online focus group discussions during 2013. PARTICIPANTS/MATERIALS, SETTING, METHODS: Cancer survivors previously treated for selected diagnoses were identified from The Swedish Childhood Cancer Register (16-24 years old at inclusion, ≥5 years after diagnosis) and approached regarding study participation. Online focus group discussions of mixed sex (n = 133) were performed on a chat platform in real time. Texts from the group discussions were analysed using qualitative content analysis. MAIN RESULTS AND THE ROLE OF CHANCE: The analysis resulted in the main category Is it possible to have a baby? including five generic categories: Risk of infertility affects well-being, Dealing with possible infertility, Disclosure of possible infertility is a challenge, Issues related to heredity and Parenthood may be affected. The risk of infertility was described as having a negative impact on well-being and intimate relationships. Furthermore, the participants described hesitation about becoming a parent due to perceived or anticipated physical and psychological consequences of having had cancer. LIMITATIONS, REASONS FOR CAUTION: Given the sensitive topic of the study, the response rate (36%) is considered acceptable. The sample included participants who varied with regard to received fertility-related information, current fertility status and concerns related to the risk of being infertile. WIDER IMPLICATIONS OF THE FINDINGS: The results may be transferred to similar contexts with other groups of patients of childbearing age and a risk of impaired fertility due to disease. The findings imply that achieving parenthood, whether or not with biological children, is an area that needs to be addressed by health care services. STUDY FUNDING/COMPETING INTERESTS: The study was financially supported by The Cancer Research Foundations of Radiumhemmet, The Swedish Childhood Cancer Foundation and the Doctoral School in Health Care Science, Karolinska Institutet. The authors report no conflicts of interest.

Attitudes towards disclosure and relationship to donor offspring among a national cohort of identity-release oocyte and sperm donors.

STUDY QUESTION: What are oocyte donors and sperm donors' attitudes towards disclosure and relationship to donor offspring? SUMMARY ANSWER: Oocyte and sperm donors in an identity-release donor programme support disclosure to donor offspring and have overall positive or neutral attitudes towards future contact with offspring. WHAT IS KNOWN ALREADY: There is a global trend towards open-identity gamete donation with an increasing number of countries introducing legislation allowing only identifiable donors. While women and men who enrol in identity-release donor programmes accept that they may be contacted by donor offspring, there is limited knowledge of their attitudes towards disclosure to donor offspring and how they perceive their relationship to potential donor offspring. STUDY DESIGN, SIZE AND DURATION: The present study is part of the 'Swedish study on gamete donation', a prospective cohort study including donors at all fertility clinics performing donation treatment in Sweden. During a 3-year period (2005-2008), donors were recruited consecutively and a total of 157 oocyte donors and 113 sperm donors (who did not donate to a specific 'known' couple) were included prior to donation. Participants in the present study include 125 female (80%) and 80 male donors (71%) that completed two follow-up assessments. PARTICIPANTS/MATERIALS, SETTINGS AND METHODS: Participants completed two postal questionnaires 2 months after donation and 14 months after donation. Attitudes towards disclosure to donor offspring were assessed with an established instrument. Perceptions of involvement with donor offspring and need for counselling was assessed with study-specific instruments. Statistical analyses were performed with non-parametric tests. MAIN RESULTS AND THE ROLE OF CHANCE: A majority of oocyte and sperm donors supported disclosure to donor offspring (71-91%) and had positive or neutral attitudes towards future contact with offspring (80-87%). Sperm donors reported a higher level of involvement with potential donor offspring compared with oocyte donors (P = 0.005). Few donors reported a need for more counselling regarding the consequences of their donation. LIMITATIONS, REASONS FOR CAUTION: While the multicentre study design strengthens external validity, attrition induced a risk of selection bias. In addition, the use of study-specific instruments that have not been psychometrically tested is a limitation. WIDER IMPLICATIONS OF THE FINDINGS: The positive attitudes towards disclosure to offspring of female and male identity-release donors are in line with previous reports of anonymous and known donors. While our results on donors' general positive or neutral attitudes towards future contact with potential donor offspring are reassuring, a subset of donors with negative attitudes towards such contact warrants concern and suggests a need for counselling on long-term consequences of donating gametes. STUDY FUNDING: The 'Swedish study on gamete donation' was funded by the Swedish Research Council, the Swedish Council for Health, Working Life and Welfare, and the Regional Research Council in Uppsala-Örebro. There are no conflicts of interest to declare.

How do lesbian couples compare with heterosexual in vitro fertilization and spontaneously pregnant couples when it comes to parenting stress?

AIM: To study parenting stress in lesbian parents and to compare that stress with heterosexual parents following in vitro fertilisation (IVF) or spontaneous pregnancies. METHODS: This survey took place during 2005-2008 and was part of the Swedish multicentre study on gamete donation. It comprised 131 lesbian parents, 83 heterosexual IVF parents, who used their own gametes, and 118 spontaneous pregnancy parents. The participants responded to the questionnaire when the child was between 12 and 36-months-old and parenting stress was measured by the Swedish Parenting Stress Questionnaire (SPSQ). RESULTS: Lesbian parents experienced less parenting stress than heterosexual IVF parents when it came to the General Parenting Stress measure (p = 0.001) and the subareas of Incompetence (p < 0.001), Social Isolation (p = 0.033) and Role Restriction (p = 0.004). They also experienced less parenting stress than heterosexual spontaneous pregnancy couples, according to the Social Isolation subarea (p = 0.003). Birth mothers experienced higher stress than co-mothers and fathers, according to the Role Restriction measure (p = 0.041). CONCLUSION: These are reassuring findings, considering the known challenges that lesbian families face in establishing their parental roles and, in particular, the challenges related to the lack of recognition of the co-mother.

Sexual orientation of women does not affect outcome of fertility treatment with donated sperm.

STUDY QUESTION: Is there a difference in fertility between heterosexual women and lesbians undergoing sperm donation? SUMMARY ANSWER: Women undergoing treatment with donated sperm are equally fertile regardless of sexual orientation. WHAT IS KNOWN ALREADY: Lesbians have an increased prevalence of smoking, obesity, sexually transmitted diseases and, possibly, polycystic ovary syndrome, all factors known to affect fertility. Previous studies on sperm donation inseminations (D-IUI) show conflicting results regarding pregnancy outcome. STUDY DESIGN, SIZE, DURATION: This is a national study of 171 lesbians and 124 heterosexual women undergoing sperm donation both as D-IUI (lesbian n = 438, heterosexual n = 298) and as embryo transfers (ET) after IVF with donated sperm (lesbians n = 225, heterosexuals n = 230) during 2005-2010. PARTICIPANTS/MATERIALS, SETTING, METHODS: All clinics in Sweden offering sperm donation recruited patients. Differences in patients' medical history, treatment results and number of treatments to live birth were analyzed using independent samples t-test, Pearson's χ(2) test or Fisher's exact probability test. MAIN RESULTS AND THE ROLE OF CHANCE: 71.8% of heterosexuals and 69.0% of lesbians had a child after treatment. The mean number of treatments was 4.2 for heterosexual women and 3.9 for lesbians. The total live birth rate, regardless of treatment type, was 19.7% for heterosexuals and 19.5% for lesbians. For D-IUI, the live birth rate was 12.8% for heterosexuals and 16.0% for lesbians and the live birth rate for all IVF embryo transfers (fresh and thawed cycles) was 28.7% for heterosexuals and 26.2% for lesbians. There were no differences in live birth rate between the groups for each of the different types of insemination stimulations (natural cycle; clomiphene citrate; FSH; clomiphene citrate and FSH combined). Nor was there a difference in live birth rate between the groups for either fresh or thawed embryo transfer. There was no difference between the proportions of women in either group or the number of treatments needed to achieve a live birth. Heterosexuals had a higher prevalence of smokers (9.2%), uterine polyps (7.2%) or previous children (11.3%) than lesbians (smokers 2.8%, P = 0.03; polyps 1.8%, P = 0.03; child 2.5%, P = 0.003). LIMITATIONS, REASONS FOR CAUTION: This study is limited to women living in stable relationships undergoing treatment with donated sperm in a clinical setting and may not apply to single women or those undergoing home inseminations. WIDER IMPLICATIONS OF THE FINDINGS: These results may influence healthcare policy decisions as well as increase the quality of clinical care and medical knowledge of healthcare professionals. The data also have important implications for individuals regarding screening, infertility diagnostic procedures and treatment types offered to heterosexuals and lesbians seeking pregnancy through sperm donation. STUDY FUNDING/COMPETING INTEREST(S): Funding was granted by the Stiftelsen Familjeplaneringsfonden i Uppsala; the Swedish Research Council for Health, Working Life and Welfare; and the Marianne and Marcus Wallenberg Foundation. The authors report no conflicts of interest.

Symptoms of anxiety and depression in lesbian couples treated with donated sperm: a descriptive study.

OBJECTIVE: To investigate symptoms of anxiety and depression in lesbian couples undergoing assisted reproductive treatment (ART), and to study the relationship of demographic data, pregnancy outcome and future reproductive plans with symptoms of anxiety and depression. DESIGN: Descriptive, a part of the prospective longitudinal 'Swedish study on gamete donation'. SETTING: All university clinics in Sweden performing gamete donation. POPULATION: A consecutive sample of 214 lesbian couples requesting assisted reproduction, 165 of whom participated. METHODS: Participants individually completed three study-specific questionnaires and the Hospital Anxiety and Depression Scale (HADS): time point 1 (T1), at commencement of ART; time point 2 (T2), approximately 2 months after treatment; and time point 3 (T3), 2-5 years after first treatment. MAIN OUTCOME MEASURES: Anxiety and depression (HADS), pregnancy outcome and future reproductive plans. RESULTS: The vast majority of lesbian women undergoing assisted reproduction reported no symptoms of anxiety and depression at the three assessment points. A higher percentage of the treated women, compared with the partners, reported symptoms of anxiety at T2 (14% versus 5%, P = 0.011) and T3 (10% versus 4%, P = 0.018), as well as symptoms of depression at T2 (4% versus 0%, P = 0.03) and T3 (3% versus 0%, P = 0.035). The overall pregnancy outcome was high; almost three-quarters of lesbian couples gave birth 2-5 years after sperm donation treatments. Open-ended comments illustrated joy and satisfaction about family building. CONCLUSION: Lesbian women in Sweden reported good psychological health before and after treatment with donated sperm.

Disclosure behaviour and intentions among 111 couples following treatment with oocytes or sperm from identity-release donors: follow-up at offspring age 1-4 years.

STUDY QUESTION: Do heterosexual parents of young children following oocyte donation (OD) and sperm donation (SD) tell or intend to tell their offspring about the way he/she was conceived? SUMMARY ANSWER: Following successful treatment with oocytes or sperm from identity-release donors in Sweden, almost all heterosexual couples intend to tell their offspring about the way he/she was conceived and some start the information-sharing process very early. WHAT IS KNOWN AND WHAT THIS PAPER ADDS: Although the Swedish legislation on identity-release gamete donors has been in effect since 1985, there is a discrepancy between the behaviour of donor-insemination parents and the legal intention that offspring be informed about their genetic origin. The present study contributes data on a relatively large sample of oocyte and sperm recipient couples' intended compliance with the Swedish legislation. DESIGN AND DATA COLLECTION METHOD: The present study constitutes a follow-up assessment of heterosexual couples who had given birth to a child following treatment with donated oocytes. Data collection was performed during 2007-2011; participants individually completed a questionnaire when the child was between 1 and 4 years of age. PARTICIPANTS AND SETTING: The present study is part of the Swedish Study on Gamete Donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. For children conceived via OD, 107 individuals (including 52 couples and 3 individuals) agreed to participate (73% response). For children conceived via SD, the response rate was 70% (n = 122 individuals, including 59 couples and 4 individuals). Mean age of participants was 34 years (SD 4.4) and they reported a high level of education. MAIN RESULTS: The majority of participants (78%) planned to tell the child about the donation, 16% had already started the information-sharing process and 6% planned not to tell their child about the donation or were undecided. Many were unsure about a suitable time to start the disclosure process and desired more information about strategies and tools for information sharing. Agreement on disclosure to offspring within the couple was related to the quality of the partner relationship. BIAS AND GENERALIZABILITY: There is a risk of selection bias, with gamete recipients preferring secrecy and non-disclosure declining study participation. The results may be regarded as partly generalizable to heterosexual couples with young children following treatment with gametes from legislatively mandated identity-release donors in an established donor programme. STUDY FUNDING/COMPETING INTERESTS: Study funding by Merck Serono, The Swedish Research Council and The Family Planning Fund in Uppsala. No conflicts of interest to declare.

Who becomes a sperm donor: personality characteristics in a national sample of identifiable donors.

OBJECTIVE: To study the personality characteristics of identifiable sperm donors in a national sample in comparison with the same characteristics of a control group. DESIGN: Descriptive study. SETTING: All clinics (n=7) performing gamete donation in Sweden. POPULATION: All Swedish sperm donors recruited during 2005-08. An age-matched group of Swedish men served as controls. METHODS: Standardised questionnaires were used to measure personality. MAIN OUTCOME MEASURES: Demographics and the Temperament and Character Inventory (TCI). RESULTS: The mean age of the donors was 33.8±7.8 years (18-56 years). About one-third (36.5%) of the donors had biological children of their own. With regard to personality, significant differences were present on harm avoidance, with lower means for sperm donors (P=0.002, 95% CI -3.74 to -0.85), and on self-directedness and cooperativeness, with higher means for donors (P=0.002, 95% CI 0.97-4.19; P=0.001; 95% CI 0.75-2.95, respectively), compared with controls. This indicates that the donors in general feel less worried and suffer less from uncertainty, shyness and fatigability than controls. They also perceive themselves as being autonomous, with a capacity to take responsibility, to behave in a goal-directed manner, to be resourceful and self-acceptant, and to behave in a manner guided by meaningful values and goals. Furthermore, they describe themselves as being well integrated in humanity or society, and having a good capacity for identification with and acceptance of other people. CONCLUSIONS: The screening process at the clinics seems to generate a group of stable, mature and well-integrated donors, and this is a promising result for the future.

Relationships in IVF couples 20 years after treatment.

BACKGROUND: Involuntary childlessness is a psychological and social dilemma for at least one but usually both members of the childless couples and is thought to have a lifelong impact on many of these couples. Studies of the long-term effects are scarce and the participation rate in published studies is generally very low. We therefore intended to analyse relationships and family structure in couples 20-23 years after the women in these couples had received IVF treatment. METHODS: The data are drawn from answers from 788 individuals-81% of the individuals treated. ENRICH has been used to analyse the relationships in those couples who stated that they have remained a couple since their IVF treatment. In total, 412 men and women (206 couples) answered the ENRICH inventory. A total of 14 men and 137 women answered the ENRICH, without their spouse answering the inventory. RESULTS: We found that the majority of all couples show a stable relationship 20 years or more after the date of IVF treatment. However, the group of couples who remained childless (9.2% of the total study population) during the 20 years following the IVF treatment differ from the majority on the subscale 'Children and Parent' measuring aspects on attitudes and feelings about having and raising children. Another difference seen in the couples that were childless was that men scored significantly higher on 'Conflict resolution' and the couples had a higher average score on positive agreement on the issues on 'Communication' indicating a skill in communication in the relationship and also an agreement that they are communicating well. CONCLUSIONS: We found that the majority of IVF couples (90.8%) who had been treated ∼20 years prior to follow-up had added at least one biological or adopted child to the family during that time. The relationships in couples who had continued to stay together during that period were generally described as being good, whether the couples had become parents or not.

Personality characteristics in a Swedish national sample of identifiable oocyte donors.

OBJECTIVE: To study the personality characteristics of identifiable oocyte donors in a national sample in comparison with normal values. DESIGN: Descriptive study. SETTING: All Swedish donation programmes. SAMPLE: In total, 181 women out of 221 donors recruited during 2005-2008. METHODS: Standardised questionnaires were used to measure personality characteristics. MAIN OUTCOME MEASURE: Demographics, temperament and character inventory (TCI). RESULTS: The majority (69%) of the donors had biological children of their own. The results from the TCI indicate that the oocyte donors were all within the normal range of character. With regard to personality, a significant difference was evident between the two groups: oocyte donors showed lower means for harm avoidance and higher scores for persistence than the controls. This indicates that the donors felt less worried, and displayed a lower level of fear of uncertainty, shyness and fatiguability, and a higher level of persistence, than the controls. In the present sample, 29 (16%) of the donors were so-called 'known donors', that is the recipient couples and the donors were known to each other. 'Known donors' displayed a mature and stable character. CONCLUSION: We found that the women who had been accepted for inclusion in this nationwide oocyte donor programme were all well adjusted and mature.