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.

Efficacy of a web-based psychoeducational intervention, Fex-can sex, for young adult childhood cancer survivors with sexual dysfunction: A randomized controlled trial.

Background: No web-based interventions addressing sexual problems are available for young adult survivors of childhood cancer. Aim: This study aimed to test the efficacy of a web-based psychoeducational intervention, Fex-Can Sex, to alleviate sexual problems in young adults treated for cancer during childhood. Method: This randomized controlled trial tested the effects of a 12-week, self-help, web-based intervention. Young adults (aged 19-40) reporting sexual dysfunction were drawn from a population-based national cohort of childhood cancer survivors and randomized to either an intervention group (IG, n = 142) or a wait-list control group (CG, n = 136). The primary outcome was 'Satisfaction with sex life' assessed by the PROMIS® SexFS v 2.0. Secondary outcomes included other SexFS domains, body image (BIS), emotional distress (HADS), health-related quality of life (EORTC QLQ-C30), and sex-related self-efficacy. Surveys were completed at baseline (T0), directly after the intervention (T1), and three months later (T2). The effects of the intervention were tested using t-test and linear mixed models, including intention-to-treat (ITT) and subgroups analysis. Adherence was based on log data extracted from the website system. The intervention included an open-ended question about perceived sexual problems. Results: No effect of the intervention was found in the primary outcome. Regarding secondary outcomes, the IG reported less vaginal dryness (Lubrication subscale) than the CG at T1 (p = 0.048) and T2 (p = 0.023). Furthermore, at T1, the IG reported less emotional distress than the CG (p = 0.047). Subgroup analyses showed that those with greater sexual problems at T0 improved over time (T1 and T2), regardless of group allocation. Overall, adherence to the intervention was low and participants' activity levels did not change the results. Additionally, some members of the IG reported increased understanding and acceptance of their sexual problems. Conclusion: The Fex-Can Sex intervention shows potential to improve sexual function, especially among those with greater dysfunction. To increase adherence and effect, we recommend the intervention to be further developed including more tailored content. Clinical trial registration: ISRCTN Registry, trial number: 33081791 (registered on November 27, 2019).

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.

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.

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.

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.

The role of a discussion forum within a web-based psychoeducational intervention focusing on sex and fertility-What do young adults communicate?

OBJECTIVE: This study sought to investigate interactive participation and content of a moderated discussion forum within a web-based psychoeducational intervention aimed at alleviating sexual dysfunction and fertility distress in young adults diagnosed with cancer. METHODS: The study is part of the Fex-Can Young Adult randomized controlled trial (RCT), in which young adults with self-reported sexual dysfunction or fertility distress were invited to participate. This study focuses on RCT participants that were randomized into the intervention condition. Sociodemographics and clinical characteristics of intervention participants and level of activity in the intervention were analyzed with descriptive statistics and compared between subgroups ("high" and "low" activity participants). Inductive qualitative thematic analysis was used to analyze the posts in the discussion forum. RESULTS: Of 135 intervention participants, 24% met the criteria for high activity participation. There were no statistically significant differences found in terms of clinical and sociodemographic characteristics between high and low activity participants. Ninety-one participants (67%) accessed the discussion forum, and 19 (14%) posted at least once. Posters shared intimate details of their experiences of sexuality and fertility following cancer. The thematic analysis of posts resulted in four themes: fertility fears, perceptions of the changed body, missing out on life, and importance of support and information. CONCLUSIONS: While a smaller proportion of participants posted in the discussion forum, a majority spent time reading posts (lurkers). Participants posting in the forum shared experiences of intimate relationships, body image, parenthood concerns, and support needs. The discussion forum was used by a majority of intervention participants, and provided appreciated support for those who posted in the forum. We therefore recommend similar interventions to include this opportunity for interaction and communication.

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.

Do young adults with cancer receive information about treatment-related impact on sex life? Results from a population-based study.

BACKGROUND: Sexual dysfunction is common following a cancer diagnosis in young adulthood (18-39 years) and problems related to sex life are ranked among the core concerns in this age group. Yet, few studies have investigated to what extent adults younger than 40, receive information from healthcare providers about the potential impact of cancer and its treatment on their sex life. METHODS: A population-based cross-sectional survey study was conducted with 1010 young adults 1.5 years after being diagnosed with cancer (response rate 67%). Patients with breast, cervical, ovarian and testicular cancer, lymphoma, and brain tumors were identified in national quality registries. Sociodemographic and clinical factors associated with receiving information were examined using multivariable binary logistic regression. RESULTS: Men to a higher extent than women reported having received information about potential cancer-related impact on their sex life (68% vs. 54%, p < 0.001). Receipt of information varied across diagnoses; in separate regression models, using lymphoma as reference, both women and men with brain tumors were less likely to receive information (women: OR 0.10, CI = 0.03-0.30; men: OR 0.37, CI = 0.16-0.85). More intensive treatment was associated with higher odds of receiving information in both women (OR 1.89; CI = 1.28-2.79) and men (OR 2.08; CI = 1.09-3.94). None of the sociodemographic factors were associated with receipt of information. CONCLUSIONS: To improve sexual health communication to young adults with cancer, we recommend diagnosis-specific routines that clarify when in the disease trajectory to discuss these issues with patients and what to address in these conversations.

Perceived social support in solo women seeking treatment with donor gametes and in women in heterosexual couples seeking IVF-treatment with own gametes.

Solo motherhood is a family constellation that is becoming increasingly common in high income countries. The demographic characteristics of solo women entering treatment with donated sperm or embryo have been shown to be different from that of cohabiting women. The general importance of perceived social support is frequently amplified when health and quality of life are concerned, and positively affects mental health status, experienced stress, perceived self-efficacy during the transition to parenthood and during parenthood itself. The objective of the present study was to compare demographic characteristics, social network and perceived social support among solo women and cohabiting women awaiting fertility treatment. This objective was explored with a study-specific demographic and background questionnaire as well as through questions on access to practical support and the Multidimensional Scale of Perceived Social Support (MSPSS) assessing different sources of support. This study is a part of a longitudinal prospective multicenter study of solo women who awaited donation treatment in six Swedish public and private fertility clinics and a comparison group of women who were cohabiting/married to male partner and awaited in vitro fertilization (IVF) treatment with the couple's own gametes. A total of 670 women were invited and 463 accepted participation (69% response rate); 207 solo women (study group) and 256 cohabiting women (comparison group). The results show significant differences in age, education, and employment between the groups. Solo women were on average 3.6 years older, had a higher level of education, a higher-income profession, and were more frequently working full time. Solo women perceived an equally high degree of social support from their families, significantly higher levels of support from friends and significantly lower support from a significant other compared to cohabiting women. Solo women expected their mother to be the most supportive person in future parenthood, while cohabiting women most often stated their cohabiting partner to fill that role. The study adds to the body of knowledge of solo women as a sociodemographic distinct group going at motherhood alone, stating a high degree of currently perceived and expected social support. The previously studied negative impact that lack of a co-parent might have, may be attenuated by the expected and perceived social support from family and friends.

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.

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.

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.

Including a discussion forum in a web-based intervention on fertility and sexuality following cancer - Usage and content.

Aim: The aim of the study was to investigate how young adult survivors of childhood cancer used an online discussion forum as part of a web-based psycho-educational intervention. Specifically, we aimed to characterize users of the discussion forum, investigate how they used the discussion forum (type of usage) and content of the posted messages. Methods: This study is a part of a randomized controlled trial, Fex-Can Childhood RCT. Participants with self-reported sexual dysfunction or fertility-related distress were drawn from a population-based national cohort. Sociodemographic and clinical characteristics of the intervention group (n = 322) and data on usage of the discussion forum were analysed with descriptive statistics and compared between subgroups. Messages posted in the online discussion forum were analysed with qualitative thematic analysis. Results: Approximately half (48 %) of participants in the intervention group accessed the discussion forum and most of them (76 %) without writing own posts. Users of the discussion forum did not statistically differ in sociodemographic or clinical characteristics from the rest of the intervention group. The 97 written posts, written by 38 individuals, were mainly descriptions of own experiences and thoughts and concerned three themes: A changed body, Concerns around family building and Longing for support. Peer-support and interaction between participants were seen in some forum threads and the 'like'-function was frequently used, demonstrating engagement and activity. Participants expressed that they felt affinity with and appreciated sharing own experiences and to recognize themselves in others' stories. Conclusions: A discussion forum as part of a web-based intervention appears to be a valuable component by giving participants an opportunity to share intimate experiences and concerns related to surviving cancer. Trial registration: ISRCTN Registry, trial number: 33081791 (registered on November 27, 2019).

Efficacy of a Web-Based Psychoeducational Intervention for Young Adults With Fertility-Related Distress Following Cancer (Fex-Can): Randomized Controlled Trial.

BACKGROUND: Threatened fertility following cancer diagnosis in the reproductive age may severely impact emotional and psychosocial well-being in survivorship. Effective web-based interventions for fertility-related distress have been lacking. OBJECTIVE: This study aims to test whether the Fertility and Sexuality following Cancer (Fex-Can) intervention is superior to standard care in reducing fertility-related distress and related psychosocial outcomes in young adults with cancer. METHODS: This randomized controlled trial evaluated a 12-week, web-based, automated self-help intervention for fertility-related distress following cancer-Fex-Can Fertility. Individuals were identified via Swedish national quality registries, and those reporting fertility-related distress 1.5 years after diagnosis were invited. A total of 100 women and 24 men (aged 19-40 years) answered self-administered surveys at baseline (T0), directly after the intervention (T1), and 3 months later (T2). The main outcome was fertility-related distress, which was measured by using the 6-dimension Reproductive Concerns After Cancer (RCAC) scale. The secondary outcomes were health-related quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), emotional distress (Hospital Anxiety and Depression Scale), fertility-related knowledge, and fertility self-efficacy. In addition, the intervention group (IG) reported self-perceived changes in problems related to fertility after cancer (T1). 2-tailed t tests and linear mixed models, including intention-to-treat and subgroup analyses, were performed to compare the effects of the intervention with those of standard care. RESULTS: Although 62% (31/50) of the participants in the IG stated that their concerns about fertility were fewer after the intervention, there were few statistically significant group differences in the main outcome (RCAC) at T1 and T2. Compared with controls, the IG rated lower distress concerning the dimension child's health at T2 (P=.003; effect size [ES]=0.64). This difference was maintained when adding group and time interactions (intention-to-treat: P=.003; ES=0.58). The IG also had better self-perceived cancer-related fertility knowledge at T1 (P=.05; ES=0.35) and T2 (P=.01; ES=0.42) than the control group. Subgroup analyses based on dose or adherence and baseline RCAC scores did not substantially alter these results. Overall, the use of the web-based program was low. CONCLUSIONS: The Fex-Can intervention had small to moderate positive effects on cancer-related fertility knowledge and distress related to child's health. The lack of group differences in other dimensions of fertility distress and related secondary outcomes contrasted with reports on self-perceived improvement after the intervention. The Fex-Can Fertility program may be a useful complement to routine psychosocial support in the clinical care of young women and men with cancer. TRIAL REGISTRATION: ISRCTN Registry 36621459; https://www.isrctn.com/ISRCTN36621459.

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.

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.

Sexual dysfunction in young adult survivors of childhood cancer - A population-based study.

OBJECTIVE: To determine the prevalence of sexual dysfunction and to identify the factors associated with sexual dysfunction in young adult childhood cancer survivors. METHODS: All survivors of childhood cancer (aged 19-40 years) in Sweden were invited to this population-based study, and 2546 men and women (59%) participated. Sexual function was examined with the PROMIS Sexual Function and Satisfaction Measure. Logistic regression was used to assess the differences between survivors and a general population sample (n = 819) and to identify the factors associated with sexual dysfunction in survivors. RESULTS: Sexual dysfunction in at least one domain was reported by 57% of female and 35% of male survivors. Among females, dysfunction was most common for Sexual interest (36%), Orgasm - ability (32%) and Vulvar discomfort - labial (19%). Among males, dysfunction was most common for the domains satisfaction with sex life (20%), Sexual interest (14%) and Erectile function (9%). Compared with the general population, male survivors more frequently reported sexual dysfunction in ≥2 domains (OR = 1.67, 95% CI: 1.03-2.71), with an increased likelihood of dysfunction regarding Orgasm - ability (OR = 1.82; 95% CI: 1.01-3.28) and Erectile function (OR = 2.30; 95% CI: 1.18-4.49). Female survivors reported more dysfunction regarding Orgasm - pleasure (9% versus 5%, OR = 1.86; 95% CI: 1.11-3.13). A more intensive cancer treatment, emotional distress and body image disturbance were associated with sexual dysfunction in survivors. CONCLUSIONS: The findings underscore the need for routine assessment of sexual health in follow-up care of childhood cancer survivors and highlight that those treated with more intensive cancer treatment and who experience concurrent psychological concerns may benefit from targeted screening and interventions.

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.