Facing the negative impact of cancer treatment on fertility : fertility-related communication and reproductive concerns following a cancer diagnosis

Background: Having children is an important part of life for many men and women. However, cancer treatment may have a negative impact on fertility by, for example, affecting eggs or sperm production. In order to safeguard patients’ future ability to have biological children, fertility preservation may be available, such as cryopreservation of sperm or embryo. Even though earlier research show that men and women are positive towards discussing future fertility at the time of diagnosis, many report deficiencies in fertility-related communication and express regret over not having been offered fertility preservation. Aim: The overall aim of this thesis was to study the perceptions and experiences of fertility-related communication among men and women of reproductive age diagnosed with cancer in Sweden. An additional aim was to investigate the experiences of receiving treatment with a potential negative impact on fertility and how this is experienced over time. Methods: The thesis is based on two studies: a quantitative survey study among cancer survivors three to seven years after a cancer diagnosis and a qualitative longitudinal interview study among newly diagnosed cancer patients. In Study 1, 484 cancer survivors (328 women and 156 men; 60% response rate) responded to a study-specific questionnaire including standardized instruments for measuring mental health (SF-36) and infertility-related stress (FPI). In Study 2, newly diagnosed cancer patients participated in individual semi-structured interviews at two time-points, a short time after cancer diagnosis (11 women and 10 men) and two years later (9 women and 7 men). Results: Study 1 showed marked sex differences in recalled fertility-related communication: while the majority of the men had discussed the risk of infertility (80%) and fertility preservation (68%), few women did so (48% and 14%, respectively). In addition, more than half of the men used fertility preservation (54%), while only 2% of the women did so. The majority of the survivors who had a pre-treatment desire to have children still wanted children three to seven years later. In addition, 17% of those who had no pre-treatment desire for children had changed their mind about wanting children after treatment. Study 2 showed that women generally had negative experiences of communicating fertility-related issues, while men felt that they had received extensive information and had been encouraged to bank sperm. Men and women described how the risk of infertility had impacted their experiences over the two years, from being of little concern to affecting decisions concerning future childbearing, causing relationship problems and creating feelings of losing control. Conclusion: The risk of infertility after cancer may cause reproductive concerns among both men and women, and according to the results women are particularly vulnerable. In view of the complexity of fertility preservation for female cancer patients, clear guidelines and close collaboration between cancer clinics and reproduction clinics may help in the effort to improve fertility-related communication with women of reproductive age

Ovarian tissue cryopreservation and transplantation among alternatives for fertility preservation in the Nordic countries - compilation of 20 years of multicenter experience

Introduction. The aim of this study is to report the current status of ovarian tissue cryopreservation among alternatives for fertility preservation in the Nordic countries. Material and methods. A questionnaire was sent to 14 Nordic academic reproductive centers with established fertility preservation programs. It covered fertility preservation cases performed up to December 2014, standard procedures for ovarian tissue cryopreservation and oocyte cryopreservation and reproductive outcomes following ovarian tissue transplantation. Results. Among the Nordic countries, Denmark and Norway practice ovarian tissue cryopreservation as a clinical treatment (822 and 164 cases, respectively) and their programs are centralized. In Sweden (457 cases), ovarian tissue cryopreservation is practiced at five of six centers and in Finland at all five centers (145 cases). Nearly all considered ovarian tissue cryopreservation to be experimental. In Iceland, embryo cryopreservation is the only option for fertility preservation. Most centers use slow-freezing methods for ovarian tissue cryopreservation. Most patients selected for ovarian tissue cryopreservation were newly diagnosed with cancer and the tissue was predominantly retrieved laparoscopically by unilateral oophorectomy. Only minor complications were reported. In total, 46 women have undergone ovarian tissue transplantation aiming at recovering fertility, 17 healthy children have been born and several additional pregnancies are currently ongoing. Whenever patients' clinical condition is permissive, oocyte cryopreservation after hormonal stimulation is preferred for fertility preservation. Between 2012 and 2014, a smaller proportion of females have undergone fertility preservation in the Nordic centers, in comparison to males (1: 3). Conclusions. Overall, ovarian tissue cryopreservation was reported to be safe. Slow freezing methods are still preferred. Promising results of recovery of fertility have been reported in Nordic countries that have initiated ovarian tissue transplantation procedures.Peer reviewe

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

Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

Objective: Long‐term issues following diagnosis and treatment of a childhood brain tumour often become apparent as the survivor enters adolescence and young adulthood. Their caregivers may additionally face long‐term impacts on their emotional and psychological functioning. This review synthesised evidence on the issues and supportive care needs of adolescent and young adult (AYA) survivors of a brain tumour diagnosed in childhood and their caregivers. Methods: Electronic databases were searched up until September 2017. All studies reporting on issues or needs of childhood brain tumour survivors (aged 14‐39) and their caregivers were included. Narrative synthesis methods were used to summarise, integrate, and interpret findings. Results: Fifty‐six articles (49 studies) met the inclusion criteria. Social issues (ie, isolation and impaired daily functioning) were most commonly reported by survivors, followed by cognitive (ie, impaired memory and attention) and physical issues (ie, endocrine dysfunctions and fatigue). Survivors experienced poorer social functioning and sexual functioning and were less likely to be employed or have children, when compared with other AYA cancer survivors. Caregivers experienced reduced support as the survivor moved into young adulthood. Caregivers reported uncertainty, increased responsibilities, and problems maintaining their own self–well‐being and family relationships. Few studies reported on supportive care needs. Survivors expressed a need for better educational support and age‐specific psychosocial services. Conclusions: Surviving a childhood brain tumour can be particularly challenging for AYA survivors and their caregivers. Robust structured research is needed to identify specific support needs of both survivors and their caregivers and how these can be optimally addressed

Gender identity and future thinking about parenthood: a qualitative analysis of focus group data with transgender and non-binary people in the UK

The idea that people who are transgender or non-binary are not interested in becoming parents has been refuted by several studies. However, both medical unknowns and cisnormativity surround the process of becoming a parent for transgender or non-binary people, with little known about the psychosocial impact on the family formation dilemmas of transgender and non-binary adults. Employing Life Course Theory as our theoretical framework, three focus group interviews were conducted with eleven transgender or non-binary adults. Qualitative data analysis of focus group interview transcripts was conducted through Thematic Analysis. Four overarching interlinked themes were identified concerning the dilemmas perceived by the nine participants who contemplated future parenthood: (i) Balancing a desire for parenthood and desires for other life goals; (ii) Feeling that who I am doesn’t fit into the cisgender system of accessing fostering, adoption or fertility services; (iii) Experiencing the conjoined challenges of gender and fertility embodiment as I see them; (iv) Searching for a non-binary or gender appropriate self and the need for flexible future planning centered on reproductive capacity. Overall, thoughts about gender transition were often interwoven with parenthood plans and in a dialectical fashion the desire and intention to have, or not have, children was implicated in satisfaction with gender transition. The significance of these themes is discussed in relation to how hopes for parenthood could be realized without jeopardizing gender identity and the need for a future focused, flexible, and open-minded approach on the part of fertility and adoption services

Facing the negative impact of cancer treatment on fertility : fertility-related communication and reproductive concerns following a cancer diagnosis [Elektronisk resurs]

Background: Having children is an important part of life for many men and women. However, cancer treatment may have a negative impact on fertility by, for example, affecting eggs or sperm production. In order to safeguard patients’ future ability to have biological children, fertility preservation may be available, such as cryopreservation of sperm or embryo. Even though earlier research show that men and women are positive towards discussing future fertility at the time of diagnosis, many report deficiencies in fertility-related communication and express regret over not having been offered fertility preservation. Aim: The overall aim of this thesis was to study the perceptions and experiences of fertility-related communication among men and women of reproductive age diagnosed with cancer in Sweden. An additional aim was to investigate the experiences of receiving treatment with a potential negative impact on fertility and how this is experienced over time. Methods: The thesis is based on two studies: a quantitative survey study among cancer survivors three to seven years after a cancer diagnosis and a qualitative longitudinal interview study among newly diagnosed cancer patients. In Study 1, 484 cancer survivors (328 women and 156 men; 60% response rate) responded to a study-specific questionnaire including standardized instruments for measuring mental health (SF-36) and infertility-related stress (FPI). In Study 2, newly diagnosed cancer patients participated in individual semi-structured interviews at two time-points, a short time after cancer diagnosis (11 women and 10 men) and two years later (9 women and 7 men). Results: Study 1 showed marked sex differences in recalled fertility-related communication: while the majority of the men had discussed the risk of infertility (80%) and fertility preservation (68%), few women did so (48% and 14%, respectively). In addition, more than half of the men used fertility preservation (54%), while only 2% of the women did so. The majority of the survivors who had a pre-treatment desire to have children still wanted children three to seven years later. In addition, 17% of those who had no pre-treatment desire for children had changed their mind about wanting children after treatment. Study 2 showed that women generally had negative experiences of communicating fertility-related issues, while men felt that they had received extensive information and had been encouraged to bank sperm. Men and women described how the risk of infertility had impacted their experiences over the two years, from being of little concern to affecting decisions concerning future childbearing, causing relationship problems and creating feelings of losing control. Conclusion: The risk of infertility after cancer may cause reproductive concerns among both men and women, and according to the results women are particularly vulnerable. In view of the complexity of fertility preservation for female cancer patients, clear guidelines and close collaboration between cancer clinics and reproduction clinics may help in the effort to improve fertility-related communication with women of reproductive age

Undergoing pregnancy and childbirth as trans masculine in Sweden : Experiencing and dealing with structural discrimination, gender norms and microaggressions in antenatal care, delivery and gender clinics

Background: A sterilization requirement to change legal gender was removed from Swedish law in 2013, facilitating pregnancy in trans masculine individuals. The limited number of studies investigating pregnancy and childbirth among trans masculine individuals indicate increased gender dysphoria and negative experiences of pre- and post-natal healthcare, highlighting a need to improve care. Research focusing on Europe or contexts where sterilization to change legal gender was previously required by national law remains minimal. Aims: This study aimed to investigate how trans masculine individuals experience healthcare encounters in connection with pregnancy, delivery and nursing, in a setting where mandatory sterilization to change legal gender was recently removed. Methods: In-depth face-to-face interviews were conducted with 12 trans masculine individuals who attended Swedish prenatal care and delivered a child after the law on legal gender recognition was amended. Thematic content analysis was used. Results: Providers in gender clinics, antenatal care and delivery were perceived to regard a masculine gender identity and pregnancy as incompatible. The main categories encompassed expectations and experiences of pregnancy related care and participant responses to it. Participants took charge of their care to ensure that their needs were fulfilled. The quality of care was inconsistent. Discussion: A lack of knowledge, narrow gender norms and the legacy of the former legal sterility requirement limited access to diagnostic evaluation of gender dysphoria, information on reproduction and gender-affirming treatment. Medical safety during pregnancy, childbirth and nursing was impeded, gender dysphoria increased, and participants experienced minority stress. Attempts to avoid microaggressions guided healthcare encounters and birth wishes. Navigating healthcare required considerable attention, personal resources and energy, leaving particularly vulnerable individuals at risk of a lower quality of care. The paper concludes with clinical recommendations.