Reproductive late effects and testosterone replacement therapy in male childhood cancer survivors: A population-based study (the Fex-Can study).

Childhood cancer survivors are at risk of various endocrine late effects affecting their quality of life. The aim of this study was to assess the prevalence and predictors of endocrine and reproductive outcomes in young adult survivors. A secondary aim was to assess possible associations between testosterone replacement therapy (TRT) and other endocrine, cardiovascular and psychosocial late effects. This nationwide study comprised 1212 male childhood cancer survivors aged 19-40 years, identified through the National Quality Registry for Childhood Cancer in Sweden. Median age at diagnosis during 1981-2017 was 7 (range 0-17) and at study 29 (19-40) years. The study combined self-report survey data with cancer treatment data from the national registry. Hormone-induced puberty was self-reported by 3.8% of the survivors and ongoing TRT by 6.0%. In separate logistic regression analyses, these treatments were associated with hematopoietic stem cell transplantation and cranial radiotherapy. Hormone-induced puberty was additionally associated with younger age at diagnosis. Men with TRT had a higher prevalence of other endocrine deficiencies, cholesterol medication, depressive symptoms and fatigue as well as a lower probability of living with a partner, having a biological child or current occupation. In the total male cohort, 28.2% reported having a biological child. Reassuring reproductive outcomes after less intensive therapies and low frequency of TRT were observed in young adult male childhood cancer survivors treated in the most recent treatment era. However, men with TRT suffered from several other endocrine, cardiovascular and psychosocial late effects, indicating a need for long-term monitoring of this high-risk group.

Using the theory of planned behavior to predict parents' disclosure of donor conception to their children: a longitudinal study.

STUDY QUESTION: Can the application of the theory of planned behavior (TPB) help predict heterosexual parents' disclosure of donor conception to their children? SUMMARY ANSWER: Parents with a stronger will to act in accordance with social norms favoring disclosure were more likely to start the disclosure process within the next 5-9 years. WHAT IS KNOWN ALREADY: In contrast to single mothers by choice and same-sex couples, heterosexual couples need to make an active decision to disclose their use of donor conception to their child. While disclosure at an early age is encouraged by international guidelines, many heterosexual-couple parents struggle with this. A previous study has found an association between parental scores of TPB factors and disclosure intention, but so far, no study has applied the TPB to predict parents' disclosure behavior. STUDY DESIGN, SIZE, DURATION: The present study is based on the fourth and fifth waves of data collection (T4 and T5) in a nation-wide longitudinal study. Participating parents had conceived through identity-release oocyte donation (n = 68, response rate 65%) and sperm donation (n = 62, response rate 56%) as part of a heterosexual couple. PARTICIPANTS/MATERIALS, SETTING, METHODS: The present study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD). Consecutive recruitment of couples starting oocyte or sperm donation treatment was conducted at all seven fertility clinics providing gamete donation in Sweden during a 3-year period (2005-2008). Participants were requested to complete postal surveys at five time points. The present study includes heterosexual-couple parents following oocyte or sperm donation who participated at the two latest time points when their children were 7-8 years old (T4), and 13-17 years old (T5). At T4, participants completed the study-specific TPB Disclosure Questionnaire (TPB-DQ) measuring attitudes and intentions to disclose the donor conception to the child, and disclosure behavior was assessed at both T4 and T5. Data from those participants who had not yet disclosed at T4 were analyzed using survival analysis with Cox regressions. MAIN RESULTS AND THE ROLE OF CHANCE: Forty participants had not disclosed the donor conception to their children at T4 and, out of these, 13 had still not disclosed at T5. We found a significant association between scores of the TPB factor Subjective norms at T4 and their subsequent disclosure behavior at T5 (HR = 2.019; 95% CI: 1.36-3.01). None of the other factors were significantly associated with disclosure behavior. LIMITATIONS, REASONS FOR CAUTION: The present study concerns heterosexual-couple parents with children conceived following treatment with gametes from open-identity donors, which limits the generalizability of our findings to other groups and contexts. Other limitations include the risk of systematic attrition due to the longitudinal study design and decreased statistical power due to few participants. WIDER IMPLICATIONS OF THE FINDINGS: Our findings highlight the importance of perceived subjective norms for parents' disclosure behavior and indicate that the co-parent's opinion about disclosure is of particular relevance in this regard. Counselors should focus on supporting prospective parents to initiate and maintain a healthy and open dialogue about concerns around building a family with donor conception. STUDY FUNDING/COMPETING INTEREST(S): The study was funded by the Swedish Research Council. The authors have no competing interests to declare. TRIAL REGISTRATION NUMBER: N/A.

The motives and experiences of donor-conceived persons requesting the identity of their sperm donors.

RESEARCH QUESTION: What are the motives and experiences of donor-conceived persons (DCP) who search for and receive information about their identity-release sperm donor? DESIGN: A qualitative interview study with 29 individuals (21 women, seven men, one non-binary) who were consecutively recruited after having requested information about their sperm donor at five Swedish University hospitals. All participants were conceived after donor insemination to heterosexual couples within an identity-release donation programme. Individual semi-structured interviews were conducted face-to-face or via telephone between September 2016 and November 2019, and transcribed audio recordings were analysed using reflexive thematic analysis. RESULTS: The motives and experiences of DCP were described in two themes. The theme 'donor information can fill different needs' describes that varying motives, thoughts and feelings are related to searching for and obtaining donor information. Motives ranged from curiosity and a desire for agency over one's conception to hopes of finding a new father. The theme 'navigating donor information in a relational context' describes the process of obtaining donor information as interpersonal, highlighting that the DCP needs to balance the interests of different stakeholders, and that obtaining donor information can challenge the relationship quality with the father. CONCLUSIONS: Obtaining the donor's identity has the potential to affect the understanding of DCP of themselves, and to influence relationships within their family in unexpected and challenging ways. Therefore, adequate resources should be allocated to support the growing number of families after identity-release donation.

Premature ovarian insufficiency and chance of pregnancy after childhood cancer: A population-based study (the Fex-Can study).

Endocrine complications are a common late effect after childhood cancer. Our study assessed the prevalence and predictors of premature ovarian insufficiency (POI) and prospects of pregnancy in young female survivors. This nationwide study combined registry and survey data for female childhood cancer survivors aged 19 to 40 years, identified through the National Quality Registry for Childhood Cancer in Sweden. Of 1989 approached young women, 1333 (67%) participated by completing a survey. Median age at diagnosis 1981 to 2017 was 6 (range 0-17) and at study 28 (19-40) years. There were two indicators of POI, induced puberty reported in 5.3% and estrogen replacement therapy (ERT) in 9.3% at assessment. In separate logistic regression analyses (P < .001), induced puberty and ERT were significantly predicted by hematopoietic stem cell transplantation (HSCT), abdominal irradiation, central nervous system irradiation and chemotherapy. ERT was also associated with older age at diagnosis. Of the 626 women (48% of responders) who had tried to become pregnant, 25% had undergone fertility investigations and 72% reported having a biological child. Treatment with HSCT was associated with 5.4 times the odds of needing fertility investigations (P < .001). Having a biological child was associated with non-HSCT treatment, but also with ever having had a partner and older age at the time of study (all P < .001). In conclusion, the majority of those female childhood cancer survivors who had tried to conceive were able to successfully give birth. However, a small identifiable group of female survivors are at risk of subfertility and early menopause.

Long-term follow-up of mental health and satisfaction in a Swedish sample of sperm and egg donors after open-identity donation.

RESEARCH QUESTION: How is the mental health of open-identity gamete donors and their satisfaction with their contributions 14-17 years after acceptance as a donor? DESIGN: The Swedish Study on Gamete Donation is a longitudinal study comprising women and men who were accepted as donors at seven Swedish university clinics between 2005 and 2008. The latest (fifth) follow-up included 215 open-identity donors (response rate 87%): 123 oocyte donors and 92 sperm donors. The donors answered a questionnaire regarding their perceptions, experiences and expectations after gamete donation 14-17 years previously. RESULTS: The donors were satisfied with the experience of donating, and no differences were detected between sperm and oocyte donors. Oocyte donors were more than twice as likely to feel that family and friends were proud of their donation compared with sperm donors (51% versus 23%, P < 0.001). In total, six donors regretted their donation: four oocyte donors and two sperm donors. Sperm donors were more frequently satisfied with the financial compensation compared with oocyte donors (P = 0.005). No difference in the development of symptoms of anxiety or depression was detected 14-17 years post-donation. CONCLUSION: Long-term follow-up studies on donors are important for recruiting donors, and for recipients and the children who will be conceived with donated gametes. The results from the current study indicate that donors, generally, have good mental health and do not regret their decision to donate gametes. These findings are reassuring for all parties involved.

Prevalence and predictors for fertility-related distress among 1010 young adults 1.5 years following cancer diagnosis - results from the population-based Fex-Can Cohort study.

BACKGROUND: Cancer treatment during reproductive ages may negatively impact fertility and there is a need of firm knowledge about the prevalence and predictors of fertility-related distress. The aim was to examine fertility-related distress in a population-based sample of young women and men recently treated for cancer and to identify predictors for this outcome. MATERIAL AND METHODS: This nationwide cohort study included 1010 individuals (694 women and 316 men), mean age 34.5 ± 4.9 and 32.1 ± 5.5, respectively, diagnosed with breast, cervical, ovarian, testicular cancers, brain tumors or lymphoma at ages 18-39 in Sweden. Participants completed a survey 1.5-year post-diagnosis to assess fertility-related distress (RCAC), emotional distress (HADS) and self-efficacy, as well as sociodemographic and clinical factors and fertility preservation. Logistic regression was used to examine associations between explanatory factors and high fertility-related distress (RCAC subscale mean >4). RESULTS: Many participants (69% of women and 47% of men) had previous children and about half reported a wish for future children. High fertility-related distress was more prevalent among women (54%) than men (27%), and women were more likely than men to report distress concerning all but one RCAC dimension after adjustment for sociodemographic factors. Use of fertility preservation was unevenly distributed (15% of women and 71% of men) and was not associated with decreased fertility-related distress. In multivariable logistic regression models, a wish for future children, being single, not having previous children, symptoms of anxiety and low self-efficacy regarding one's ability to handle threats of infertility were associated with high fertility-related distress. CONCLUSION: This nationwide study found a high prevalence of fertility-related distress in young women and men recently treated for cancer and identified sociodemographic and psychological predictors. Fertility preservation was not found to act as a buffer against fertility-related distress, indicating the continuous need to identify strategies to alleviate fertility distress following cancer.

Same-sex mothers' experiences of equal treatment, parenting stress and disclosure to offspring: a population-based study of parenthood following identity-release sperm donation.

STUDY QUESTION: What are the experiences of same-sex mothers following identity-release sperm donation regarding equal treatment in society, parenting stress and disclosure to child? SUMMARY ANSWER: Mothers predominantly reported equal treatment in society, low levels of parenting stress and early disclosure of the donor conception to the child, and half of the couples had also informed the child of his/her right to obtain the donor's identity. WHAT IS KNOWN ALREADY: The number of two-mother families is increasing, and previous studies have reported about challenges related to heteronormativity, discrimination and the status of the non-birth mother. Same-sex mothers have been found to disclose the child's donor conception earlier than different-sex parents, but little is known regarding disclosure of the child's right to obtain identifying information about the donor. STUDY DESIGN, SIZE, DURATION: The present study concerns the fourth wave of data collection of a nation-wide longitudinal study. A total of 143 same-sex mothers (73% response rate) following identity-release sperm donation completed individual surveys when their donor-conceived child had reached age 7. These women represent a total of 82 couples who had undergone sperm donation treatment. PARTICIPANTS/MATERIALS, SETTING, METHODS: The study is part of the longitudinal Swedish Study on Gamete Donation (SSGD). Couples accepted for gamete donation treatment at seven Swedish University hospitals were recruited between 2005 and 2008 and were requested to complete postal surveys during four waves of data collection. The present study sample includes same-sex mothers who completed a survey when their donor-conceived child had reached 7 years of age. Data were collected with the Swedish Parenting Stress Questionnaire (SPSQ), and study-specific items on experiences of treatment in society and disclosure behavior. Group comparisons (birth mothers vs non-birth mothers) were conducted using Chi2-tests, independent t-tests and Mann-Whitney U-tests, and written comments provided for open-response items were analyzed by qualitative content analysis. MAIN RESULTS AND ROLE OF CHANCE: The mothers were generally open about the child's donor conception and the large majority (>80%) reported being treated positively and in the same way as other parents. However, satisfaction with treatment in health care settings was significantly lower than that reported in contacts with the child's school and recreational activities (P < 0.001) and open-response comments indicate that this may be related predominantly to heteronormative language and assumptions. Birth mothers and non-birth mothers reported similar treatment in society and similar levels of parenting stress. All but one couple had already talked with their 7-year-old child about his/her conception with donor sperm. Half of the couples had also informed the child about his/her opportunity to obtain identifying information about the donor, and remaining couples planned later disclosure. Children's reactions were generally described as neutral, positive or characterized by interest and curiosity. LIMITATIONS, REASONS FOR CAUTION: The present study was performed within the context of the Swedish legislation on identity-release donation, which limits the generalizability to same-sex couples using anonymous or known sperm donors. Although no evidence of attrition bias was found, it is possible that those couples who initially declined participation in the SSGD (23%) or dropped out at the fourth wave of data collection (27%) differ from the study sample in terms of variables that we were unable to control for. WIDER IMPLICATION OF THE FINDINGS: The present finding that most same-sex mothers in a population-based sample experience equal treatment in society is encouraging and validates previous results from predominantly qualitative studies. Nevertheless, the fact that a subgroup experiences discrimination and less favorable treatment indicates that further action is needed, particularly in child health care settings. The present study is the first to report on the timing of parents' disclosure of the child's right to identifying donor information and suggests that disclosure during preschool ages is feasible and does not appear to be related to negative consequences. In view of the increased availability and use of identity-release donation, there is a pressing need to investigate parents' intentions, behaviors and needs with regard to talking with their child about his/her opportunity to obtain the donor's identity. STUDY FUNDING/COMPETING INTEREST(S): Financial support from the Swedish Research Council (2013-2712) and the Swedish Research Council for Health, Working Life and Welfare (2014-00876). There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

National survey of donor-conceived individuals who requested information about their sperm donor-experiences from 17 years of identity releases in Sweden.

STUDY QUESTION: What characterizes the group of donor-conceived (DC) individuals who request information about their identity-release sperm donor in Sweden, and what are their experiences of disclosure, information receipt and donor contact? SUMMARY ANSWER: Following three decades of identity-release donation in Sweden, few DC individuals have requested donor information with varying experiences of information receipt and donor contact. WHAT IS KNOWN ALREADY: In 1985, Sweden was the first country worldwide to enact legislation that gave DC individuals the right to obtain identifying information about their donor. Since then, identity-release gamete donation has become available in many countries but there is limited knowledge about the individuals who request donor information. STUDY DESIGN, SIZE, DURATION: A nation-wide cross-sectional survey study was performed at all seven University hospitals that provided donation treatment in Sweden during 1985-2002. During this period only donor insemination to heterosexual couples was permitted. Inclusion criteria were being 18 years of age or older, conceived with donor sperm and having requested information about the donor by December 2020. Recruitment was performed during 2016-2020. PARTICIPANTS/MATERIALS, SETTING, METHODS: A total of 60 individuals had requested information about their donor. Of these, 53 were approached and 40 individuals, representing 34 families, accepted study participation (75% response rate). Participants completed a postal survey with the WHO-10 well-being index and study-specific questions about experiences of disclosure, motivations for requesting donor information, receipt of information, as well as intentions and experiences of donor contact. Independent t-test and chi-square tests were used to compare ratings of participants with early and late disclosure. MAIN RESULTS AND ROLE OF CHANCE: Of ∼900 DC individuals who had reached adult age, a total of 60 (≈7%) had requested information about the donor. Most of the 40 study participants (78%) made their requests within 2 years after reaching 18 years of age, or following disclosure at later ages (up to 32 years). Several participants had adult DC siblings in the family who had not requested any donor information. All except five participants received identifying information about the donor from the clinic. However, some donors had died or lacked contact information. Among those participants who were able to contact their donor, 41% had done so at the time of the study, while a third of the participants were unsure about potential contact. Several had met the donor in person and a few were in regular contact. About half of the participants had been informed about their donor conception in adolescence or adulthood (age 12-32), and there were significant differences between participants based on age at disclosure. Compared to those with early disclosure, participants with late disclosure were significantly more likely to be dissatisfied with the timing of their disclosure (P = 0.021), to react with negative emotions (P < 0.001), and to subsequently contact the donor (P = 0.047). LIMITATIONS, REASONS FOR CAUTION: The limited population available for inclusion resulted in a small sample size, despite a high response rate. In addition, men's lower participation rate must be taken into consideration when interpreting the results. WIDER IMPLICATIONS OF THE FINDINGS: The small number of individuals requesting information about their identity-release sperm donor is surprising. While not all DC individuals appear to be interested in donor information, it is reasonable to assume that some are unaware of their donor conception and thus unable to make informed decisions regarding their genetic origins. During the coming years, young women and men in many countries will become eligible to access identifying information about their donor. In order to meet the needs of these individuals, and to support positive outcomes for all involved parties, it is essential that adequate protocols and resources are developed. STUDY FUNDING/COMPETING INTEREST: Financial support from The Swedish Research Council. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

Psychological adjustment in disclosing and non-disclosing heterosexual-couple families following conception with oocytes or spermatozoa from identity-release donors.

RESEARCH QUESTION: Is there a relationship between disclosure and psychological adjustment in heterosexual-couple families following oocyte donation and sperm donation when the child is 7 years old? DESIGN: This was a cross-sectional study of heterosexual couples with 7- to 8-year-old children conceived with identity-release oocyte donation (n = 83, response rate 56%) or sperm donation (n = 113, response rate 65%). Participants individually completed instruments for the assessment of parents' emotional distress (HADS), parenting stress (SPSQ) and relationship quality (ENRICH), and their child's psychological adjustment (SDQ-Swe) and reported whether they had talked with their child about their donor conception. RESULTS: About half of parents had talked with their child about their donor conception (oocyte donation 61%, sperm donation 58%). Separate analyses for mothers and fathers showed no main effects of disclosure or type of donation on the outcomes, nor were there any interaction effects. Overall, mothers and fathers in oocyte donation and sperm donation families were found to be well adjusted, reporting within-normal range levels of anxiety, depression and parental stress, and a high relationship quality. The children were well adjusted, with low levels of emotional and behavioural problems. CONCLUSIONS: Overall, the present results confirm previous research indicating that early disclosure of the donor conception to children is not associated with negative outcomes for parents or children. Heterosexual couples using oocyte or sperm donation should be informed that disclosure when the child is 7-8 years old is not detrimental to the psychological adjustment of families.

Prevalence and risk factors for sexual dysfunction in young women following a cancer diagnosis - a population-based study.

BACKGROUND: Self-reported sex problems among women diagnosed with reproductive and nonreproductive cancers before the age of 40 are not fully understood. This study aimed to determine sexual dysfunction in young women following a cancer diagnosis in relation to women of the general population. Furthermore, to identify factors associated with sexual dysfunction in women diagnosed with cancer. MATERIALS AND METHODS: A population-based cross-sectional study with 694 young women was conducted 1.5 years after being diagnosed with cancer (response rate 72%). Potential participants were identified in national quality registries covering breast and gynecological cancer, lymphoma and brain tumors. The women with cancer were compared to a group of women drawn from the general population (N = 493). Sexual activity and function were assessed with the PROMIS® SexFS. Logistic regression was used to assess differences between women with cancer and the comparison group, and to identify factors associated with sexual dysfunction. RESULTS: The majority of the women with cancer (83%) as well as the women from the comparison group (87%) reported having had sex the last month (partner sex and/or masturbation). More than 60% of the women with cancer (all diagnoses) reported sexual dysfunction in at least one of the measured domains. The women with cancer reported statistically significantly more problems than women of the comparison group across domains such as decreased interest in having sex, and vaginal and vulvar discomfort. Women with gynecological or breast cancer and those receiving more intense treatment were at particular high risk of sexual dysfunction (≥2 domains). Concurrent emotional distress and body image disturbance were associated with more dysfunction. CONCLUSION: The results underscore the need to routinely assess sexual health in clinical care and follow-up. Based on the results, development of interventions to support women to cope with cancer-related sexual dysfunction is recommended.

Maternal advanced age, single parenthood, and ART increase the risk of child morbidity up to five years of age.

BACKGROUND: Advanced maternal age, single status and use of assisted reproductive technology (ART) are increasing in mothers in high-income countries, and all are known risk factors for negative obstetric outcomes. Less is known about their long-term consequences for childhood morbidity. Thus, the aim of this study was to investigate morbidity up to five years of age, in the children of older, single, and/or ART-treated mothers. METHODS: A cross-sectional using Swedish registers was performed comprising 23 772 children. The prevalence of diagnosis and the number of hospital visits for specialist care, were compared and analyzed in relation to maternal age at childbirth, maternal civil status, and mode of conception. The odds ratio for specialized care within each ICD-chapter were estimated using single and multiple logistic regression. RESULTS: Children born to single mothers and children conceived using ART had significantly more outpatient visits for specialist care and significantly more diagnoses compared to children with married/cohabiting mothers, and spontaneously conceived children. Children born to mothers of advanced maternal age (≥40) had fewer in- and outpatient visits. However, they were significantly more often diagnosed within ICD-chapters XVI, XVII i.e., they experienced more morbidity in the neonatal period. CONCLUSION: The results indicate that children born to single mothers and children of ART-treated mothers have a higher morbidity and consume more specialist care than children of married/cohabiting and spontaneously pregnant mothers. We conclude that the use of ART, maternal single status and advanced maternal age are risk factors of importance to consider in pediatric care and when counseling women who are considering ART treatment.

Understanding parents' intention to disclose the donor conception to their child by application of the theory of planned behaviour.

STUDY QUESTION: Does the theory of planned behaviour (TPB) contribute to understanding parents' intention to share information about genetic origin with their donor-conceived child? SUMMARY ANSWER: Parents' intention to start disclosure was associated with beliefs that disclosure would have desired consequences and a desire to act in accordance to societal norms. WHAT IS KNOWN ALREADY: Despite a growing consensus on donor-conceived offspring's right to information about their genetic origin, disclosure to the child remains a challenge for many parents, particularly heterosexual couples. TPB has successfully been applied to many health-related contexts and may contribute to increase understanding of parents' decision-making about disclosing the genetic origin to their children. STUDY DESIGN, SIZE, DURATION: A cross-sectional survey study of heterosexual couples with children aged 7-8 years following identity-release oocyte donation (OD, n = 83) or sperm donation (SD, n = 113). PARTICIPANTS/MATERIALS, SETTING, METHODS: The study is part of the prospective longitudinal Swedish Study on Gamete Donation. Couples accepted for oocyte or sperm donation treatment at seven fertility clinics were recruited in 2005-2008 and requested to complete four postal surveys in the following 10 years. The present study sample includes heterosexual couples with donor-conceived children aged 7-8 years. Data were collected with the study-specific TPB Disclosure Questionnaire and analysed with path analysis. MAIN RESULTS AND THE ROLE OF CHANCE: More than half of parents following OD or SD had already disclosed the donor conception to their child (OD 61%, SD 58%). Among parents who had not yet started the disclosure process, the belief that disclosure would have desired consequences (P < 0.05) and a desire to act in accordance to social norms favouring disclosure (P < 0.01) were positively associated with their intention to talk with their child about the donor conception during the upcoming year. In contrast, perceived confidence to talk with the child about his/her genetic origin was found to be negatively associated with the intention to start the disclosure process (P < 0.05). Type of treatment (OD/SD) and the existence or absence of a genetic link to the child were not directly associated with parents' disclosure intentions. LIMITATIONS, REASONS FOR CAUTION: The study was performed with heterosexual couples within the context of the Swedish legislation on identity-release donation, which limits the generalizability to other populations. Also, attrition may have introduced selection bias to the study findings. Future studies using the TPB Disclosure Questionnaire (TPB-DQ) with larger samples are needed to validate this measure. WIDER IMPLICATIONS OF THE FINDINGS: Application of the theory of planned behaviour highlighted the importance of attitudes and social norms for parents' intention to share information about the donor conception with their child. The present results add to the complexity of disclosure of donor conception, and may contribute to promote open communication and support family life following donor conception. STUDY FUNDING/COMPETING INTEREST(S): Financial support from the Swedish Research Council. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

Positioning the donor in a new landscape-mothers' and fathers' experiences as their adult children obtained information about the identity-release sperm donor.

STUDY QUESTION: How do heterosexual parents experience identity-release donation when adult children have obtained information about their sperm donor? SUMMARY ANSWER: Adult offspring's receipt of identifying information about the sperm donor challenged the fathers' role as a parent, which was reflected in how parents positioned the donor in relation to the family. WHAT IS KNOWN ALREADY: An increasing number of countries provide access to treatment with identity-release or 'open-identity' donors. However, there is limited knowledge about how parents experience and manage the situation when adult offspring obtain identifying information about the donor and may even establish contact with him. STUDY DESIGN, SIZE, DURATION: This qualitative interview study included 23 parents whose offspring had obtained information about their sperm donor. Interviews were conducted from October 2018 to January 2019. PARTICIPANTS/MATERIALS, SETTING, METHODS: A purposive sample of parents (15 mothers and 8 fathers) was recruited via adult offspring, who had requested identifying donor information at five Swedish University hospitals. All participating parents were part of a heterosexual couple who had conceived with sperm from an identity-release donor. Individual semi-structured interviews were conducted face-to face or via telephone, and transcribed audio recordings were analyzed using reflexive thematic analysis. MAIN RESULTS AND THE ROLE OF CHANCE: The parents expressed diverse experiences related to their parenthood and the presence of the donor after offspring had obtained information about him; these were described in two themes. The theme 'Navigating (in)visible markers of parenthood' describes parenthood as embedded with dichotomous meanings of nature and nurture that parents navigated in relation to social approval. The theme 'Positioning the donor in a new landscape' describes how parents managed the presence of the donor by positioning him at a distance or acknowledging him as a person or even as part of the family, while some struggled to position him, giving rise to ambivalent feelings. The absence of genetic connectedness challenged the father's role as parent, which was reflected in parents' positioning of the donor. LIMITATIONS, REASONS FOR CAUTION: The study was performed within the context of the Swedish legislation on identity-release donation and is based on experiences of heterosexual couples who had used sperm donation and had informed their offspring about their donor conception. This, together with the fact that parents' accounts were predominantly represented by mothers, must be taken into consideration regarding transferability to other populations. WIDER IMPLICATIONS OF THE FINDINGS: Negotiations of social and genetic parenthood are still present among parents many years after treatment and may resurface when adult offspring obtain the donor's identity. Access of the adult offspring to identifying information about the donor may have unexpected consequences for family relations, including expanding the family to include the donor. Challenges related to male infertility and family dynamics indicate that parents should have access to counseling and support to manage family life with varying genetic linkage within and outside the family unit. STUDY FUNDING/COMPETING INTEREST(S): Financial support was from The Swedish Research Council (Grant 2013-2712). There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

Fertility-related information received by young women and men with cancer - a population-based survey.

BACKGROUND: Infertility is a well-known sequela of cancer treatment. Despite guidelines recommending early discussions about risk of fertility impairment and fertility preservation options, not all patients of reproductive age receive such information. AIMS: This study aimed to investigate young adult cancer patients' receipt of fertility-related information and use of fertility preservation, and to identify sociodemographic and clinical factors associated with receipt of information. MATERIALS AND METHODS: A population-based cross-sectional survey study was conducted with 1010 young adults with cancer in Sweden (response rate 67%). The inclusion criteria were: a previous diagnosis of breast cancer, cervical cancer, ovarian cancer, brain tumor, lymphoma or testicular cancer between 2016 and 2017, at an age between 18 and 39 years. Data were analyzed using logistic regression models. RESULTS: A majority of men (81%) and women (78%) reported having received information about the potential impact of cancer/treatment on their fertility. A higher percentage of men than women reported being informed about fertility preservation (84% men vs. 40% women, p < .001) and using gamete or gonadal cryopreservation (71% men vs. 15% women, p < .001). Patients with brain tumors and patients without a pretreatment desire for children were less likely to report being informed about potential impact on their fertility and about fertility preservation. In addition, being born outside Sweden was negatively associated with reported receipt of information about impact of cancer treatment on fertility. Among women, older age (>35 years), non-heterosexuality and being a parent were additional factors negatively associated with reported receipt of information about fertility preservation. CONCLUSION: There is room for improvement in the equal provision of information about fertility issues to young adult cancer patients.

Cultural adaptation and psychometric evaluation of the Swedish version of the Reproductive Concerns After Cancer (RCAC) scale.

BACKGROUND: Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultural adaptation of the RCAC scale into Swedish and evaluate its psychometric properties among young women who have undergone treatment for cancer. METHODS: The RCAC was forward translated from English into Swedish and assessed for cultural adaptation based on a two-panel approach followed by cognitive interviews with the target group. For the psychometric evaluation, a Swedish cohort of 181 female young adult breast cancer survivors completed a survey including the RCAC scale approximately 1.5 years post-diagnosis. Psychometric properties were examined by analyses of construct validity (confirmatory factor analysis and convergent validity), data quality (score distribution, floor and ceiling effects), reliability and known-groups validity. RESULTS: The confirmatory factor analysis yielded an acceptable fit (RMSEA 0.08, SRMR 0.09, CFI 0.92). Convergent validity was demonstrated by a negative correlation of moderate size (- 0.36) between the RCAC total score and the emotional function scale of the EORTC QLQ-C30. Reliability measured with Revelle Ω total was satisfactory (0.73-0.92) for five of the dimensions, and poor for the dimension Becoming pregnant (Revelle Ω total = 0.60); Cronbach's alpha showed a similar pattern. Known-groups validity was indicated by significant RCAC mean score differences (MD), reflecting more concerns among women with a certain (MD 4.56 [95% CI 3.13 to 5.99]) or uncertain (MD 3.41 [95% CI 1.68 to 5.14]) child wish compared to those with no wish for (additional) children. CONCLUSION: The translation and cultural adaptation of the Swedish RCAC has resulted in a scale demonstrating construct and known-groups validity, and satisfactory reliability for five of six dimensions. The dimension Becoming pregnant showed non-optimal internal consistency and should undergo further evaluation. The Swedish RCAC is recommended to be used in research settings for measurement of concerns related to fertility and parenthood in young women with cancer.

Fex-Talk: a Short Educational Intervention Intended to Enhance Nurses' Readiness to Discuss Fertility and Sexuality with Cancer Patients.

Sexual and reproductive health is known to generally be insufficiently addressed by health care personnel working in cancer care. We hence developed a short educational intervention, Fex-Talk, to overcome the barriers to communicate about sexuality and fertility. The present study sought to evaluate the Fex-Talk intervention, which aims to enhance nurses' readiness to discuss fertility and sexuality issues with cancer patients. The educational intervention involves a single session with an optional follow-up session, and it includes different components in accordance with Kolb's experiential learning cycle. The evaluation was based on participants' oral and written feedback regarding the content and organization of the intervention, as well as on teachers' field notes from five educational events involving nurses who work with cancer patients (n = 140). The data were analyzed using a thematic approach. Four themes were identified, namely increased awareness, need for knowledge, challenging discomfort, and dealing with external obstacles. The intervention increased participants' awareness of patients' need to discuss sexuality and fertility and of their own need for additional knowledge. The role-play exercise was said to challenge personal discomfort, although the participants still felt it helped to boost their courage to, in the future, engage in such conversations. Several external obstacles to initiate a conversation about sexuality or fertility were identified, and possible strategies for overcoming them were discussed. In conclusion, the Fex-Talk intervention was experienced positively by the participating nurses. The results indicate that the intervention increased nurses' understanding of patients' needs related to sex and fertility and overcome barriers to initiate discussions about sex and fertility with patients.

Oncologists' and pediatric oncologists' perspectives and challenges for fertility preservation.

International guidelines recommend that health-care providers initiate discussions about the impact of treatment on fertility with cancer patients of reproductive age, or with parents/legal guardians of children, as early as possible in the treatment process. Still, both physicians and patients confirm that this is not always the case. This literature review summarizes findings regarding oncologists' and pediatric oncologists' perspectives and challenges of providing fertility preservation care, and points out directions for development. The results concerning the challenges facing clinicians are consistent and encompass both internal and external factors. The internal factors relate to clinicians' characteristics and values and include their knowledge of fertility preservation, clinical experience, perceptions of patients' plans for children, and how comfortable they are to discuss sensitive issues. The external factors relate to the availability of health-care services and the organization of care, including the clinicians' working conditions. Several strategies to overcome identified challenges for clinicians to provide high-quality fertility preservation care are proposed. These include educational interventions to increase clinicians' knowledge about treatment-induced fertility impairment and available fertility preservation measures, as well as interventions aimed to increase clinicians' readiness and competence to communicate with patients and their parents. In addition, different types of educational resources for patients have been suggested to improve patient-provider communication about fertility preservation, such as age-appropriate brochures and decision aids. Organizational approaches suggested to address the identified external factors include development and implementation of policies and guidelines as well as closer collaboration between oncological and fertility clinics. Also, modifications of electronic medical record systems may support clinicians by prompting the documentation of discussions about potential treatment impact on future fertility and about available fertility preservation options. The development and implementation of multifaceted oncofertility programs appears to be a promising way forward towards high-quality fertility preservation care meeting patients' needs.

Cross-border surrogacy: Experiences of heterosexual and gay parents in Sweden.

INTRODUCTION: Surrogacy is a controversial method of assisted reproduction that is not permitted in many countries. While there is some evidence that families following surrogacy seem to fare well, there is limited knowledge about the experiences of parents who turn to cross-border surrogacy. The aim of the present study was therefore to investigate the experiences of heterosexual parents and gay fathers who chose cross-border surrogacy to have a child. MATERIAL AND METHODS: This cross-sectional survey describes the experiences of 30 families (18 heterosexual parent and 12 gay father families). Participants were recruited through a website for a Swedish surrogacy interest group. The participants were requested individually to complete a postal questionnaire including study-specific questions on their experiences of disclosure and the Swedish Parenting Stress Questionnaire. RESULTS: All couples but one were still living together and had a child (3 months to 5 years). Parenting stress levels were generally low and were not related to sexual orientation. While almost all parents were open about the child's mode of conception in contacts with health care, gay fathers were significantly more open about using surrogacy in contacts with preschool (P = 0.004) and child recreational activities (P = 0.005) compared with heterosexual parents. A majority described being treated positively or "as any other parent" in these contexts. CONCLUSIONS: Heterosexual and gay parents reported low levels of parenting stress and generally experienced positive or neutral reactions to their parenthood in contacts with healthcare providers, in preschool, and in the child's recreational activities.

Evaluation of risk factors' importance on adverse pregnancy and neonatal outcomes in women aged 40 years or older.

BACKGROUND: Women of advanced age (40 years or older) are generally, at risk for pregnancy and delivery related problems. In addition, there is limited knowledge on being of advanced age and having been given Assisted Reproductive Treatment (ART) and its association with negative obstetric outcomes. Therefore, data from the Swedish Medical Birth Register was used to investigate pregnancy and neonatal outcomes for women aged 40 or more who had given birth. The secondary aim was to compare the obstetric outcomes of women who had used ART and women who had not undergone ART while adjusting for marital status across the age groups. METHOD: Women of advanced age who had given birth in Sweden during 2007-2012 formed the index group, n = 37,558; a reference group of women comprised 71,472 women under the age of 40. An additional subgroup of women aged 45 or older when giving birth was also formed, n = 2229. The obstetric and neonatal data for all the women was derived from national register data. RESULTS: Women of advanced age were more often single, had undergone ART, and more often experienced adverse obstetric outcomes than did younger women. The neonate's health was also more often adversely affected expressed as being born with low birth weight and Small for Gestational Age (SGA), having lower Apgar scores, and having more health problems during the first week compared to the reference group. CONCLUSIONS: Women who are approaching the upper limit of fecundity are at greater risk for having children who are preterm and SGA. The adverse effects of being preterm and SGA may have negative long-term effects, not only on the children but also on the mothers. This needs to be addressed more frequently in a clinical setting when advising women of all ages on pregnancy and ART treatment.

Attitudes towards embryo donation among healthcare professionals working in child healthcare: a survey study.

BACKGROUND: The aim of this study was to investigate attitudes towards embryo donation and embryo donation families among professionals working in primary child healthcare, and their experiences of these families. METHODS: A cross-sectional online survey was conducted in Sweden between April and November 2016. A total of 712 primary healthcare physicians, registered nurses and psychologists were approached to participate in this study. The study-specific questionnaire measured attitudes and experiences in the following four domains: legalisation and financing, the family and the child's health, clinical experience of meeting families following embryo donation, and knowledge of embryo donation. RESULTS: Of the 189 women and 18 men who completed the questionnaire (response rate 29%), relatively few (13%) had clinical experience of caring for families following embryo donation. Overall, 69% supported legalisation of embryo donation for infertile couples, and 54% agreed it should be publicly funded. The majority (88%) agreed the child should have the right to know the donors' identity. Respondents did not believe that children conceived through embryo donation are as healthy as other children (50%), citing the risks of poor mental health (17%) and social stigmatization (18%). Approximately half reported low confidence in their own knowledge of embryo donation (47%) and wanted to know more (58%). CONCLUSIONS: These results indicate relatively large support among healthcare professionals in Sweden for the legalisation of embryo donation. In order to provide adequate healthcare to families following embryo donation, there is a need to develop educational resources to increase knowledge about the medical and psychosocial consequences of embryo donation among healthcare professionals working in primary healthcare.