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.

Feasibility of Mindful After Cancer: Pilot Study of a Virtual Mindfulness-Based Intervention for Sexual Health in Cancer Survivorship.

BACKGROUND: Mindfulness-based interventions (MBIs) are increasingly recognized as an effective strategy for supporting female cancer survivors experiencing sexual health concerns. AIM: To examine the feasibility of a sexual health MBI, Mindful After Cancer, which was adapted to meet the needs of breast and gynecologic cancer survivors in a community setting and for delivery via videoconference. METHODS: A mixed-methods approach was used to evaluate the acceptability, feasibility, and appropriateness of the 8-week virtual MBI. Weekly sessions were 1.5-2 hours in duration and included guided meditations and group discussion about sexuality after cancer and mindfulness in daily life. Home practice activities related to both mindfulness practice and sexual health. Participants completed online surveys at baseline and 1-month post-intervention. A purposive sample of 10 participants were invited to complete a follow-up interview 2-3 months post-intervention. OUTCOMES: Primary outcomes included both qualitative and quantitative assessments of acceptability, appropriateness, and feasibility of the Mindful After Cancer intervention for sexual health in cancer survivorship. RESULTS: Twenty-two women completed the intervention (Mean age 53.2 years, SD = 9.4, Range= 39-73), with time since diagnosis ranging from 1 to 27 years (Mean 6.0 years, SD = 5.9). Participants completed 6.8 sessions on average (Range = 2 - 8) and 77% reported that the time commitment was manageable. Both qualitative and quantitative findings support the feasibility, acceptability, and appropriateness of the intervention. CLINICAL IMPLICATIONS: Many cancer survivors experience sexual dysfunction and related distress after diagnosis and well after treatment ends, yet there are few interventions available. Improved access to effective interventions can improve the delivery of survivorship care and patient outcomes. STRENGTHS & LIMITATIONS: The sample size is small for this pilot study, and a control group was not included. The intervention was offered over two time periods, one prior to COVID-19 pandemic and one during the pandemic, resulting in both limitations associated with potential differences between the experiences of participants and the opportunity to learn more about the feasibility of the intervention during times of crisis. CONCLUSION: Results suggest that virtual delivery of the MBI is feasible, acceptable, and appropriate for breast and gynecologic cancer survivors. Gorman JR, Drizin JH, Smith E, et al. Feasibility of Mindful After Cancer: Pilot Study of a Virtual Mindfulness-Based Intervention for Sexual Health in Cancer Survivorship. J Sex Med 2022;19:1131-1146.

Challenges experienced and resources identified by young to midlife couples 1-3 years post-cancer diagnosis.

OBJECTIVE: The purpose of this study was to explore what young to midlife couples viewed as their strengths as a couple and the greatest challenges in their experience with cancer 1-3 years post-diagnosis. METHODS: We used qualitative content analysis to extract common themes from open-ended questions from 42 cancer survivors and their partners (aged 27-58). Patterns of themes by age and gender of the survivor were also explored. RESULTS: Couples described both positive and negative impacts of the cancer experience: (1) strengthened the relationship, bringing couples closer together; (2) brought emotional strain to many areas of life, especially for partners; (3) created positive changes in lifestyle and new priorities for the couple; (4) created strain in the couple's relationship and intimacy; and (5) altered the role of family in supporting the couple. Couples also described four key strengths in dealing with the cancer experience: (1) drawing strength from shared love and mutuality; (2) communicating openly, even about the difficult stuff; (3) working together as a team to support each other; and (4) drawing strength from shared values and goals. Couples reported unmet needs related to the emotional and relational strain of the cancer experience, managing longer term survivor symptoms, fertility and physical intimacy, and lack of support or attention to the partner who often assumed the role of care partner. CONCLUSIONS: Themes are discussed in light of current dyadic concepts and importance of couple-based interventions.

Dyadic support across contraceptive decision-making among young adult breast cancer survivors and their partners.

OBJECTIVE: The purpose of this study is to explore the role of dyadic support across the contraceptive decision-making process between young adult breast cancer (YABC) survivors and their partners. RESEARCH APPROACH: Semi-structured interviews with YABC survivors and their partners. PARTICIPANTS: Twenty-five young adult breast cancer survivors and their partners (n = 50). Survivors reported an average age of 36.9 years (SD = 4.30) and the majority self-identified as white (86.2%). METHODOLOGICAL APPROACH: Thematic analysis approach with dyads as the primary unit of analysis, guided by the dyadic decision-making framework and the Theory of Gender and Power. RESULTS: Perceived lack of contraceptive options due to a history of hormone-sensitive cancer, perceived infertility, and contraception as a result of cancer treatment (e.g., hysterectomy) contributed to the contraceptive decision context for survivors and their partners. Contraceptive support varied across couples depending on the cancer-specific context, where communication, sharing responsibility, and respecting bodily autonomy revealed as supportive behaviors. Other social influences including survivors' desire to conceive biologically and family planning desires also related to partner supportive behaviors. INTERPRETATIONS: YABC survivors face specific challenges to contraceptive decision-making where partners can offer supportive behaviors. Health care providers can also support couples by engaging in triadic communication about contraception and family planning. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS OR POLICY: Psychosocial providers can support couples by encouraging them to talk together about contraception and highlighting the importance of triadic communication with a healthcare provider to support shared decision-making and alignment of contraceptive decisions with family planning desires.

Higher reproductive concerns associated with fertility consultation: a cross-sectional study of young adult male cancer survivors.

PURPOSE: This study examined associations between fertility consultation (FC) and multiple dimensions of reproductive concerns among young adult (YA) male cancer survivors. METHODS: One hundred and seventy YA male cancer survivors (age 18 to 35) across the USA completed an online survey between 2016 and 2018. Participants reported demographics, receipt of FC, and reproductive concerns. Reproductive concerns were measured multidimensionally using the Reproductive Concerns after Cancer-Male scale. We used log binomial regression to examine associations between FC and high reproductive concerns across multiple domains. RESULTS: In multivariate analyses adjusting for desire for children, FC was associated with higher likelihood of having at least one high reproductive concern (relative risk [RR] 1.4, 95% CI 1.2-1.7). Across subscales, FC was associated with greater likelihood of having high concerns about fertility potential (RR 1.7, 95% CI 1.0-3.0), achieving pregnancy (RR 3.5, 95% CI 1.3-9.5), their (potential) child's health (RR 1.5, 95% CI 1.1-2.2), and disclosing infertility to a partner (RR 2.7, 95% CI 1.8-4.1). In contrast, associations were not observed between FC and likelihood of high concerns about personal health (RR 1.4, 95% CI 0.5-3.8) or acceptance of infertility (RR 1.8, 95% CI 0.8-3.9). CONCLUSIONS: YA male cancer survivors who received FC were more likely to have high reproductive concerns than those who did not receive FC. Men who seek out FC after cancer diagnosis may need additional support for their reproductive concerns. Research is needed to identify strategies to alleviate these concerns among this population.

Patient-Centered Communication to Address Young Adult Breast Cancer Survivors' Reproductive and Sexual Health Concerns.

Women faced with a diagnosis of breast cancer as young adults commonly experience negative effects of cancer and cancer treatment on their reproductive and sexual health (RSH) that are inadequately addressed by their healthcare providers (HCPs). The objectives of this study were to 1) identify approaches to improving RSH communication from YA breast cancer survivors' perspectives, 2) identify facilitators and barriers to the approaches identified, and 3) identify specific strategies to improve patient-centered RSH communication. We conducted individual telephone interviews with 29 women who were diagnosed with breast cancer under age 40 years. We used a grounded theory approach to identify themes, and explored how the themes related to the PCC framework to elucidate specific strategies for improving communication. Three main themes emerged: 1) Normalizing and integrating assessment of RSH concerns; 2) HCP conveying genuine caring and investment; and 3) Improving accessibility of comprehensive RSH services after cancer. Results revealed concrete strategies for improving patient-centered RSH communication at the patient-provider and health system levels. These included reminding patients that RSH concerns are common, routinely asking about RSH, using active listening, and connecting patients to HCP who can address their RSH concerns.

Navigating sexual health in cancer survivorship: a dyadic perspective.

PURPOSE: This qualitative study examined how young adult breast cancer survivors (YABCS) and their partners appraised and managed their sexual health and intimate relationships after cancer. METHODS: We conducted concurrent, individual telephone interviews with 25 YABCS and their male partners. We utilized a thematic, inductive analysis to examine individual interviews, followed by analysis within and across couples to identify dyadic themes. We explored how themes mapped on to the Theory of Dyadic Illness Management to build a conceptual model specific to the sexual health challenges of young adult couples living with cancer. RESULTS: Our analysis revealed five interconnected themes: (1) shared understanding of physical and psychological challenges of sexual health after cancer, (2) navigating role shifts and changes to sexual relationship, (3) getting through it as a team, (4) maintaining open communication, and (5) need for services and support for partners/caregivers and couples. CONCLUSION: Both survivors and their partners articulated physical (e.g., painful sex, decreased libido) and psychological (e.g., guilt, self-consciousness) challenges to their sexual health in survivorship. Our dyadic focus revealed a spectrum of ways that couples managed the changes to their relationships and sexual health, highlighting "open communication" and strategies for "working as a team" as critical. There is no "one size fits all" solution, as individuals and couples cope with and manage these challenges in different ways. Study results can inform couple-focused intervention strategies, such as creating shared understanding of sexual health after cancer and improving communication skills.

Fertility counseling before cancer treatment and subsequent reproductive concerns among female adolescent and young adult cancer survivors.

BACKGROUND: Fertility counseling before cancer treatment has been advocated by clinical guidelines, though little is known about its long-term impact on the unique reproductive concerns of female adolescent and young adult (AYA) cancer survivors. The goal of this study was to measure the association between fertility counseling by fertility specialists before cancer treatment and subsequent reproductive concerns. METHOD: A cross-sectional analysis was performed among 747 AYA survivors aged 18-40 years who had been recruited from cancer registries and physician and advocacy group referrals between 2015 and 2017. Participants self-reported information on past fertility counseling at cancer diagnosis, cancer type and treatment, and current reproductive concerns, as measured using the multidimensional Reproductive Concerns After Cancer scale. Multivariable log-binomial regression models tested associations between fertility counseling and reproductive concerns. RESULTS: The mean age of the cohort was 33.0 years (standard deviation, 5.1 years), and the mean period since diagnosis was 7.7 years (standard deviation, 5.0 years). Seventy-three percent of participants were white, and 24% were Hispanic. Fertility counseling was reported by 19% of survivors; moderate to high overall reproductive concerns were reported by 44% of participants. In adjusted analysis, fertility counseling was significantly associated with moderate to high reproductive concerns (risk ratio, 1.22; 95% confidence interval, 1.02-1.45) and not modified by exposure to fertility-threatening treatments (Pinteraction = .23). CONCLUSION: A large proportion of AYA cancer survivors across cancer types and treatment exposures reported moderate to high reproductive concerns, suggesting that there is a need to address these cancer-specific reproductive health concerns after treatment. Higher concerns, even with counseling, suggests the need to improve the quality of fertility counseling throughout the cancer continuum.

Efficacy of a web-based women's health survivorship care plan for young breast cancer survivors: a randomized controlled trial.

PURPOSE: Breast cancer survivorship care plans (SCP) have limited content addressing women's health issues. This trial tested if young breast cancer survivors who receive a web-based, women's health SCP were more likely to improve on at least one of the four targeted issues (hot flashes, fertility-related concerns, contraception, and vaginal symptoms) compared to attention controls. METHODS: A randomized controlled trial recruited female survivors ages 18-45 at diagnosis, 18-50 at enrollment, completed primary cancer treatment, and had a significant women's health issue: moderate or higher fertility-related concerns; ≥ 4 hot flashes/day with ≥ 1 of moderate severity; ≥ 1 moderate vaginal atrophy symptoms; or not contracepting/using less effective methods. Survivors underwent stratified, block randomization with equal allocation to intervention and control groups. The intervention group accessed the online SCP; controls accessed curated resource lists. In intention-to-treat analysis, the primary outcome of improvement in at least one issue by 24 weeks was compared by group. RESULTS: 182 participants (86 intervention, 96 control), mean age 40.0 ± 5.9 and 4.4 ± 3.2 years since diagnosis, were randomized. 61 intervention group participants (70.9%) improved, compared to 55 controls (57.3%) (OR 1.82, 95% CI 0.99-3.4, p = 0.057). The following issue-specific improvements were observed in the intervention versus control arms: fertility-related concerns (27.9% vs. 14.6%, OR 2.3, 95% CI 1.1-4.8); hot flashes (58.5% vs. 55.8%, OR 1.1, 95% CI 0.57-2.2); vaginal symptoms (42.5% vs. 40.7%, OR 1.1, 95% CI 0.6-2.0); contraception (50% vs. 42.6%, OR 1.4, 95% CI 0.74-2.5). CONCLUSIONS: In young breast cancer survivors, a novel, web-based SCP did not result in more change in the primary outcome of improvement in at least one of the four targeted women's health issues, than the attention control condition. The intervention was associated with improved infertility concerns, supporting efficacy of disseminating accessible, evidence-based women's health information to this population.

Applying behavioral theory to understand fertility consultation uptake after cancer.

OBJECTIVE: The objective of this study was to examine the association between theoretical constructs from the Health Belief Model and fertility consultation status after cancer. METHODS: Reproductive-aged female cancer survivors self-reported their use of fertility consultation, perceived severity of and susceptibility to infertility, perceived barriers to and effectiveness of fertility consultation, and cues to action from family/peers and doctors, as well as demographics and cancer characteristics. Logistic regression was used to analyze the association between theoretical constructs and fertility consultation status. RESULTS: Fertility consultation uptake was more prevalent among survivors with higher incomes, those without children, those who wanted a (another) child, and those who were diagnosed more recently. In the final multivariate model, higher perceived severity of infertility, fewer perceived barriers to fertility consultation, and more cues to action from family/peers and doctors were significantly associated with fertility consultation uptake, controlling for income. Exploratory bivariate analyses of barriers to fertility consultation revealed that cost and trouble accessing services were significantly associated with not having a fertility consultation. CONCLUSIONS: The Health Belief Model is useful for understanding factors associated with fertility consultation uptake. Efforts should be made to reduce financial barriers and improve patient-centered assessment of family-building goals.