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

The impact of cancer on subsequent chance of pregnancy: a population-based analysis

This study was funded by NHS Lothian Cancer and Leukaemia Endowments Fund. Part of this work was undertaken in the MRC Centre for Reproductive Health which is funded by the MRC Centre grant MR/N022556/1 .STUDY QUESTION What is the impact of cancer in females aged ≤39 years on subsequent chance of pregnancy? SUMMARY ANSWER Cancer survivors achieved fewer pregnancies across all cancer types, and the chance of achieving a first pregnancy was also lower. WHAT IS KNOWN ALREADY The diagnosis and treatment of cancer in young females may be associated with reduced fertility but the true pregnancy deficit in a population is unknown. STUDY DESIGN, SIZE, DURATION We performed a retrospective cohort study relating first incident cancer diagnosed between 1981 and 2012 to subsequent pregnancy in all female patients in Scotland aged 39 years or less at cancer diagnosis (n = 23 201). Pregnancies were included up to end of 2014. Females from the exposed group not pregnant before cancer diagnosis (n = 10 271) were compared with general population controls matched for age, deprivation quintile and year of diagnosis. PARTICIPANTS/MATERIALS, SETTING, METHODS Scottish Cancer Registry records were linked to hospital discharge records to calculate standardized incidence ratios (SIR) for pregnancy, standardized for age and year of diagnosis. Linkage to death records was also performed. We also selected women from the exposed group who had not been pregnant prior to their cancer diagnosis who were compared with a matched control group from the general population. Additional analyses were performed for breast cancer, Hodgkin lymphoma, leukaemia, cervical cancer and brain/CNS cancers. MAIN RESULTS AND THE ROLE OF CHANCE Cancer survivors achieved fewer pregnancies: SIR 0.62 (95% CI: 0.60, 0.63). Reduced SIR was observed for all cancer types. The chance of achieving a first pregnancy was also lower, adjusted hazard ratio = 0.57 (95% CI: 0.53, 0.61) for women >5 years after diagnosis, with marked reductions in women with breast, cervical and brain/CNS tumours, and leukaemia. The effect was reduced with more recent treatment period overall and in cervical cancer, breast cancer and Hodgkin lymphoma, but was unchanged for leukaemia or brain/CNS cancers. The proportion of pregnancies that ended in termination was lower after a cancer diagnosis, and the proportion ending in live birth was higher (78.7 vs 75.6%, CI of difference: 1.1, 5.0). LIMITATIONS, REASONS FOR CAUTION Details of treatments received were not available, so the impact of specific treatment regimens on fertility could not be assessed. Limited duration of follow-up was available for women diagnosed in the most recent time period. WIDER IMPLICATIONS OF THE FINDINGS This analysis provides population-based quantification by cancer type of the effect of cancer and its treatment on subsequent pregnancy across the reproductive age range, and how this has changed in recent decades. The demonstration of a reduced chance of pregnancy across all cancer types and the changing impact in some but not other common cancers highlights the need for appropriate fertility counselling of all females of reproductive age at diagnosis. STUDY FUNDING/COMPETING INTEREST(S) This study was funded by NHS Lothian Cancer and Leukaemia Endowments Fund. Part of this work was undertaken in the MRC Centre for Reproductive Health which is funded by the MRC Centre grant MR/N022556/1. RAA has participated in Advisory Boards and/or received speaker’s fees from Beckman Coulter, IBSA, Merck and Roche Diagnostics. He has received research support from Roche Diagnostics, Ansh labs and Ferring. The other authors have no conflicts to declare.Publisher PDFPeer reviewe

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

How Can We Improve Oncofertility Care for Patients? A Systematic Scoping Review of Current International Practice and Models of Care

© The Author(s) 2018. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. BACKGROUND: Fertility preservation (FP) is an important quality of life issue for cancer survivors of reproductive age. Despite the existence of broad international guidelines, the delivery of oncofertility care, particularly amongst paediatric, adolescent and young adult patients, remains a challenge for healthcare professionals (HCPs). The quality of oncofertility care is variable and the uptake and utilization of FP remains low. Available guidelines fall short in providing adequate detail on how oncofertility models of care (MOC) allow for the real-world application of guidelines by HCPs. OBJECTIVE AND RATIONALE: The aim of this study was to systematically review the literature on the components of oncofertility care as defined by patient and clinician representatives, and identify the barriers, facilitators and challenges, so as to improve the implementation of oncofertility services. SEARCH METHODS: A systematic scoping review was conducted on oncofertility MOC literature published in English between 2007 and 2016, relating to 10 domains of care identified through consumer research: communication, oncofertility decision aids, age-appropriate care, referral pathways, documentation, training, supportive care during treatment, reproductive care after cancer treatment, psychosocial support and ethical practice of oncofertility care. A wide range of electronic databases (CINAHL, Embase, PsycINFO, PubMed, AEIPT, Education Research Complete, ProQuest and VOCED) were searched in order to synthesize the evidence around delivery of oncofertility care. Related citations and reference lists were searched. The review was undertaken following registration (International prospective register of systematic reviews (PROSPERO) registration number CRD42017055837) and guidelines of Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). OUTCOMES: A total of 846 potentially relevant studies were identified after the removal of duplicates. All titles and abstracts were screened by a single reviewer and the final 147 papers were screened by two reviewers. Ten papers on established MOC were identified amongst the included papers. Data were extracted from each paper and quality scores were then summarized in the oncofertility MOC summary matrix. The results identified a number of themes for improving MOC in each domain, which included: the importance of patients receiving communication that is of a higher quality and in different formats on their fertility risk and FP options; improving provision of oncofertility care in a timely manner; improving access to age-appropriate care; defining the role and scope of practice of all HCPs; and improving communication between different HCPs. Different forms of decision aids were found useful for assisting patients to understand FP options and weigh up choices. WIDER IMPLICATIONS: This analysis identifies core components for delivery of oncofertility MOC. The provision of oncofertility services requires planning to ensure services have safe and reliable referral pathways and that they are age-appropriate and include medical and psychological oncofertility care into the survivorship period. In order for this to happen, collaboration needs to occur between clinicians, allied HCPs and executives within paediatric and adult hospitals, as well as fertility clinics across both public and private services. Training of both cancer and non-cancer HCPs is needed to improve the knowledge of HCPs, the quality of care provided and the confidence of HCPs with these consultations

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.

Characteristics of good contraceptive counselling - An interview study

OBJECTIVE: One key component in preventing unplanned pregnancies is to provide effective contraceptive counselling. This study aimed to investigate what characterises good contraceptive counselling from the woman's perspective. METHODS: A qualitative study with a phenomenological approach. Twenty-four women aged 15-45 participated in semi-structured, individual, face-to-face interviews that lasted, on average, one hour. Data were analysed by latent content analysis. RESULTS: One overall theme emerged, person-centred contraceptive counselling - an interactive process, with three main categories: (i) a trustworthy healthcare provider, (ii) creating a liaison and (iii) the right time and place. CONCLUSIONS: The healthcare provider's attributes as well as what happened between the healthcare provider and the woman, and the surrounding context, had a bearing on the women's descriptions of good contraceptive counselling. The process of the counselling was described as more important than the actual outcome; thus, healthcare providers need to be aware that this seemingly straightforward consultation is rather multi-layered and has great health promoting potential