Study protocol for the Fex-Can Childhood project An observational study and a randomized controlled trial focusing on sexual dysfunction and fertility-related distress in young adult survivors of childhood cancer

Background: This study protocol describes the Fex-Can Childhood project, comprising two studies: The Fex-Can Childhood observational study (OS) and the Fex-Can Childhood randomized controlled trial (RCT). The Fex-Can Childhood OS aims to determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young adult childhood cancer survivors (aged 19-40) compared to an age matched comparison group; the Fex-Can Childhood RCT will evaluate the effect of a web-based psycho-educational intervention (Fex-Can intervention) on sexual dysfunction and fertility-related distress. Methods: The Fex-Can Childhood OS will have a population-based cross-sectional design. All individuals treated for childhood cancer in Sweden at the age of 0 to 17 years (current age 19-40) will be identified through the National Quality Registry for Childhood Cancer. Established self-reported instruments will be used to measure sexual function, fertility-related distress, body image, anxiety and depression, and health-related quality of life. Self-efficacy related to sexual function and fertility, and fertility-related knowledge, will be assessed by study-specific measures. Clinical variables will be collected from the registry. Results will be compared to an age-matched comparison group from the general population. Participants in the Fex-Can Childhood OS who report a high level of sexual dysfunction and/or fertility-related distress will be invited to participate in the RCT. The Fex-Can intervention comprises two programs: The Fex-Can Sex and the Fex-Can Fertility targeting sexual dysfunction and fertility-related distress, respectively. The control condition will be a wait-list. Sexual function and fertility-related distress will be the primary outcomes. The secondary outcomes include body image, anxiety and depression, health-related quality of life and self-efficacy related to sexual function and fertility. Post- and follow-up assessments will be conducted directly after end of intervention (primary end point), at 3 months and 6 months after end of intervention. Additionally, a process-evaluation including study-specific items and a qualitative interview will be conducted. Discussion: The Fex-Can Childhood project will advance knowledge in the areas of sexual function and fertility-related distress among young adult survivors of childhood cancer. If the Fex-Can intervention proves to be efficacious, steps will be taken to implement it in the follow-up care provided to this population.Peer reviewe

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 Z 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. 2021 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).Peer reviewe

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

AbstractObjectiveTo determine the prevalence of sexual dysfunction and to identify the factors associated with sexual dysfunction in young adult childhood cancer survivors.MethodsAll 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.ResultsSexual 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.ConclusionsThe 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.</p

Relationship quality in lesbian and heterosexual couples undergoing treatment with assisted reproduction

One of the major factors impacting on a couples relationship is the desire to have children. To many couples having a child is a confirmation of their love and relationship and a means to deepen and develop their intimate relationship. At the same time parental stress can impact on relationship quality. Relationship quality in lesbian couples is, currently, sparsely studied. The aim of the present study was to compare lesbian and heterosexual couples perceptions of their relationship quality at the commencement of assisted reproduction, and to relate this to background data such as educational level, having previous children and, for lesbian couples, the use of a known versus anonymous donor. less thanbrgreater than less thanbrgreater thanThe present study is part of the prospective longitudinal oSwedish study on gamete donation, including all fertility clinics performing donation treatment in Sweden. Of a consecutive cohort of 214 lesbian couples about to receive donor insemination and 212 heterosexual couples starting regular IVF treatment, 166 lesbian couples (78 response) and 151 heterosexual couples (71 response) accepted participation in the study. At commencement of assisted reproduction participants individually completed questionnaires including the instrument oENRICH, which is a standardized measure concerning relationship quality. less thanbrgreater than less thanbrgreater thanIn general, the couples rated their relationship quality as good, the lesbian couple better than the heterosexuals. In addition, the lesbian women with previous children assessed their relationship quality lower than did the lesbian woman without previous children. For heterosexual couples previous children did not influence their relationship quality. Higher educational levels reduced the satisfaction with the sexual relationship (P 0.04) for treated lesbian women, and enhanced the rating of conflict resolution for treated lesbian women (P 0.03) and their partners (P 0.02). Heterosexual women with high levels of education expressed more satisfaction with communication in their relationship (P 0.02) than did heterosexual women with lower educational levels. less thanbrgreater than less thanbrgreater thanIn this Swedish study sample of lesbian and heterosexual couples relationships, we found that they were generally well adjusted and stable in their relationships when starting treatment with donated sperm or IVF, respectively. However, where lesbian women had children from a previous relationship, it decreased relationship quality. For the heterosexual couples previous children did not affect relationship quality.Funding Agencies|Merck Serono||Uppsala/ Orebro Regional Research Council||Medical Research Council of Southeast Sweden|

Exploring childhood cancer survivors' views about sex and sexual experiences -findings from online focus group discussions

PURPOSE: To explore childhood cancer survivors' views about sex and sexual experiences and, as an additional aim, their possible needs for care and support from health care professionals regarding sexual life. METHODS: Written online focus group discussions were performed with survivors of childhood cancer, identified through the Swedish Childhood Cancer Registry; 133 (36%; aged 16-25) participated. Written text was analysed using qualitative content analysis. RESULTS: The analysis resulted in one main category: Could my cancer experience have an impact on my sexual life? with four generic categories: Sex considered to be good, Feeling insecure and falling behind, Relating sex to a stable relationship and Concerns related to the physical body. In general, participants had not reflected on the possibility that their cancer experience could impact on sexual life. Sex was often considered to be something natural, important and taken for granted. However, thoughts and worries were expressed including being shy, feeling insecure and falling behind peers. Physical concerns included vaginal dryness and difficulties related to erection and reaching orgasm. Many participants stated that sexual issues had not been discussed with health care professionals, however, the need for such support differed. CONCLUSIONS: Many of the childhood cancer survivors' did not relate their sexual experiences to previous cancer treatment. However, problems were expressed, both of emotional and physical nature. Many participants stated that they had not received any information or support regarding sexual issues from health care professionals, why it is recommended to be regularly addressed in follow-up care

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

The interaction between donor-conceived families and their environment: parents’ perceptions of societal understanding and attitudes regarding their family-building

Disclosure issues in relation to donor conception have mainly been examined in the context of relationships and interaction within donor-conceived families, whilst influences from outside the family, for example societal ones, have been little researched. This study explored the societal experiences of individuals who build their family with the help of donor conception (i.e. donor-conceived families), specifically, where and how parents and society interact and the presence and influence of cultural beliefs and values regarding the family. Belgian (n = 89) and Swedish (n = 56) donor-conceiving parents completed an online-survey focusing on their experiences with societal perceptions and attitudes and behaviour and responses from friends, healthcare professionals and teachers. Descriptive and comparative statistical analyses were conducted. Results showed that donor-conceiving parents were challenged by societal representations, responses from friends, healthcare professionals and teachers, and cultural norms and values. Parents had to cope with lack of knowledge and understanding of donor-conceived families and colliding views on the relevance of genes in kinship. They needed to be able to explain and defend themselves, correct others and handle emotions and sensitivity when managing these interactions. Through psycho-education health-care professionals can help families anticipate potential reactions and manage societal responses by strengthening parents’ coping mechanisms. These findings also call for awareness of the presence of cultural norms and values even when counsellor and patient share the same culture because counsellor and donor-conceiving parents can relate differently to (collide or conform with them) the shared cultural norms, which can impact on parents’ experience.status: Published onlin

Sexual Dysfunction Among Young Adults in Sweden : A Population-Based Observational Study

INTRODUCTION: There is a lack of studies using validated instruments to investigate prevalence and predictors of sexual dysfunction among young adults. AIM: This population-based observational study aimed to determine the prevalence and predictors of sexual dysfunction in young adults in Sweden and to compare sexual function in women and men. METHODS: A random sample of the general population aged 19-40 years, identified via the Swedish population registry, was approached with a postal survey. A total of 819 individuals participated, 493 women (51% response) and 326 men (34% response). Predictors of sexual dysfunction were identified by multivariable logistic binary regression analyses. MAIN OUTCOME MEASURE: Sexual function and satisfaction were assessed using the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measure, version 2.0. RESULTS: Among the women, 53% reported at least one sexual dysfunction; the corresponding figure for men was 31%. The most common sexual dysfunction in women was low sexual interest (reported by 32%), whereas low satisfaction with sex life was the most common dysfunction in men (reported by 17%). Men reported a higher level of sexual interest and orgasm ability than women, whereas women reported a higher level of orgasm pleasure than men. Regression models showed that in both women and men, having a partner was related to lower risk of dysfunction in the domains satisfaction with sex life and orgasm pleasure. Having children was related to low interest in sex in women, whereas it was related to dissatisfaction with sex life in men. Being born outside of Sweden predicted sexual dysfunction in both women and men, as did experiencing symptoms of anxiety and depression. CONCLUSION: Sexual dysfunction is common in young adults, particularly in women. Risk factors of sexual dysfunction include not having a partner, having children, being an immigrant, and reporting symptoms of anxiety and depression. Ljungman L, Lampic C, Wettergren L, et al. Sexual Dysfunction Among Young Adults in Sweden-A Population-Based Observational Study. Sex Med 2020;8:631-642

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 donors 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 childs donor conception earlier than different-sex parents, but little is known regarding disclosure of the childs 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 Chi(2)-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 childs donor conception and the large majority (&amp;gt;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 childs school and recreational activities (P &amp;lt; 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. Childrens 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 childs 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 donors 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.Funding Agencies|Swedish Research Council [2013-2712]; Swedish Research Council for Health, Working Life and Welfare [2014-00876]</p

Relationships in couples treated with sperm donation -a national prospective follow-up study Relationships in couples treated with sperm donation -a national prospective follow-up study

Abstract Background: Long-term follow-up on relationship quality in couples who use sperm donation is scarce. Therefore, this study aimed to analyse changes over time in satisfaction with relationship in heterosexual couples who were scheduled for treatment with sperm donation and IVF couples treated with their own gametes and to compare the two groups undergoing different treatment for infertility. Method: A prospective follow-up study in which data were collected twice on two groups; couples receiving sperm donation and IVF couples using their own gametes. The ENRICH instrument was used to gain information about the individuals&apos; subjective experience of their relationship at the time of acceptance for treatment and again 2-5 years later