Female Young Adult Cancer Survivors Research Articles

Preliminary testing of "roadmap to parenthood" decision aid and planning tool for family building after cancer: Results of a single-arm pilot study.

Many young adult female cancer survivors need to use reproductive medicine, surrogacy, or adoption to have a child. This study pilot tested Roadmap to Parenthood, a web-based, self-guided decision aid and planning tool for family building after cancer (disease agnostic). A single-arm pilot study tested feasibility, acceptability, and obtained effect size estimates of the Roadmap tool. Participants, recruited via hospital-based and social media strategies, completed a baseline survey (T1), accessed the Roadmap tool (website), then completed surveys at one- and 3-months (T2 and T3, respectively). Feasibility and acceptability were evaluated with rates of eligibility, enrollment, and survey completion, and feedback. Pairwise t-tests and repeated measures ANOVA evaluated usage effects. Effect size estimates were calculated. Participants (N=98) averaged 31years old (SD=5.61); 71% were nulliparous. Enrollment rate was 73%, T1-T2 completion rate was 80%, and 93% accessed the website. From T1-T2, participants reported improvements in decisional conflict (p<0.001; Cohen's d=0.85), unmet information needs (p<0.001; Cohen's d=0.70), self-efficacy (p=0.003; Cohen's d=0.40), and self-efficacy for managing negative emotions (p=0.03; Cohen's d=0.29); effects were sustained at T3. There was no change in reproductive distress (p=0.22). By T3, 94% reported increased consideration of preparatory actions and 20%-61% completed such actions. The Roadmap intervention was feasible to conduct, acceptable to users, and led to improvements in key psychosocial outcomes. Future directions will test intervention efficacy in a randomized controlled trial with a larger sample and over a longer period. A web-based tool may help women make decisions about family building after cancer and prepare for potential challenges.

Perceptions of Infertility and Reproductive Concerns in Adolescent and Young Adult Female Cancer Survivors.

This cross-sectional survey study explores the fertility perceptions of adolescent and young adult female cancer survivors (n = 111) and relationships to fertility counseling and reproductive distress. Satisfaction with post-treatment fertility counseling (β = -0.20, p = 0.04), perceived consequences of cancer-related fertility changes (β = 0.26, p = 0.03), and understanding of one's reproductive health (β = -0.22, p = 0.03) correlated with reproductive distress, controlling for covariates (F(10, 88) = 3.50, p < 0.001). Findings suggest that post-treatment counseling may be important to addressing survivors' perceptions of fertility and reproductive potential, which influences levels of distress and to create a greater sense of control on their road to parenthood.

Abstract B094: Geographic accessibility to obstetricians and gynecologists is associated with incidence of live birth among Black adolescent and young adult female cancer survivors in Texas

Abstract Objective: To assess incidence of live birth after cancer diagnosis among Black adolescent and young adult women (AYA) age 15-39 years at diagnosis, and evaluate whether incidence varies by exposure to racial residential segregation, neighborhood poverty, or geographic accessibility to obstetricians/gynecologists. Methods: Black AYA women diagnosed with cancer between January 1, 1995 and December 31, 2015 were identified using population-based data from the Texas Cancer Registry. These data were linked with live birth certificates through December 31, 2016 to identify the first live birth after diagnosis. We measured three neighborhood characteristics using the 2010 U.S. Census: 1) Black racial residential segregation, using the Index at the Concentration of Extremes; 2) percent of the population living in poverty; and 3) geographic accessibility to obstetricians/gynecologists, calculated using National Provider Identifier data as the supply of healthcare and U.S. Census data as the demand for healthcare. We estimated cumulative incidence of live birth accounting for the competing risk of death, overall and by low vs. high (≥ 20%) poverty and sample-based quartiles of racial residential segregation and geographic accessibility. Results: We identified 689 first live births to 7,921 Black AYA women after cancer diagnosis. Two-thirds of the sample were age 30 years or older at diagnosis: 27.3% were aged 30-34 and 45.6% were aged 35-39. The most common cancer types were breast (34.3%), gynecologic (16.4%), lymphoma (9.8%), thyroid (8.5%), and gastrointestinal (7.5%). Stage at diagnosis was as follows: local (39.6%), regional (27.8%), distant (19.3%), and missing (13.4%). Five- and ten- year cumulative incidence of live birth after cancer diagnosis was 6.3 (95% confidence interval [CI]: 5.8-6.9) and 9.1 (95% CI: 8.4-9.8), respectively. Incidence of live birth was not associated with racial residential segregation or neighborhood poverty. Cumulative incidence of live birth varied by geographic accessibility to obstetricians/gynecologists (p=.046); however, nonlinear patterns were observed starting around five years after diagnosis, such that those residing in quartiles 1 (lowest accessibility) and 3 had lower incidence of live birth compared to those in quartiles 2 and 4 (highest accessibility). Discussion: To our knowledge, this is the first study examining the association of neighborhood characteristics and incidence of live birth in a population-based sample of Black AYA women after cancer diagnosis. We did not observe associations for racial residential segregation or neighborhood poverty. This may indicate that characteristics such as current health status, types of treatment received, or treatment side effects are more relevant for live birth after diagnosis. Geographic accessibility to obstetricians/gynecologists was associated with live birth, but in a nonlinear fashion. Future analyses will assess spatial patterns and potential confounders, such as urban or rural residence, which may account for non-linearity in this association. Citation Format: Sandi L. Pruitt, Jennifer S. Wang, Kevin A. Henry, Lynn N. Ibekwe, Caitlin C. Murphy. Geographic accessibility to obstetricians and gynecologists is associated with incidence of live birth among Black adolescent and young adult female cancer survivors in Texas [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B094.

Greater fertility distress and avoidance relate to poorer decision making about family building after cancer among adolescent and young adult female survivors.

Many adolescent and young adult female (AYA-F) cancer survivors face decisions about family building using reproductive medicine or adoption to achieve parenthood. This study evaluated associations among reproductive distress, avoidance, and family-building decision making and identified sociodemographic and clinical characteristics related to high distress and avoidance. A cross-sectional survey assessed AYA-F survivors' oncofertility experiences. Measures included an investigator-designed Unmet Information Needs scale, Reproductive Concerns After Cancer Scale, Impact of Events Scale-Avoidance subscale, Decision Self-Efficacy scale, and Decision Conflict Scale. Two linear regression models evaluated correlates of decision self-efficacy and decisional conflict about family building after cancer. Bivariate analyses evaluated correlates of avoidance using Pearson's correlation, t-test, and ANOVA. AYA-Fs (N=111) averaged 31-years-old (SD=5.49) and 3years post-treatment (range: 1-23years); 90% were nulliparous. Most common diagnoses were leukemia (24%) and breast cancer (22%). Average decisional conflict was 52.12 (SD=23.87, range: 0-100); 74% of the sample reported DCS scores within the clinically significant range. Higher levels of reproductive distress (B=-0.23, p=0.04) and avoidance (B=-0.24, p=0.02) related to lower decision self-efficacy. Younger age (B=-0.18, p=0.03), greater unmet information needs (B=0.33, p<0.001), and higher levels of reproductive distress (B=0.34, p=0.001) related to worse decisional conflict. Predictors of distress and avoidance were identified. After cancer treatment, high fertility distress and avoidant coping were associated with poorer quality decision making about family building after cancer. Fertility counseling post-treatment should support self-efficacy and constructive coping skills to counteract high distress, maladaptive coping, and facilitate values-based decision making.

Cancer survivorship and risk of pregnancy complications, adverse obstetric outcomes, and maternal morbidities in female adolescents and young adults: a nationwide population-based study from Taiwan.

Cancer treatment in female adolescent and young adult (AYA) cancer survivors (i.e., those diagnosed between 15 and 39 years of age) may adversely affect multiple bodily functions, including the reproductive system. We initially assembled a retrospective, nationwide population-based cohort study by linking data from two nationwide Taiwanese data sets. We subsequently identified first pregnancies and singleton births to AYA cancer survivors (2004-2018) and select AYA without a previous cancer diagnosis matched to AYA cancer survivors for maternal age and infant birth year. The study cohort consisted of 5151 and 51,503 births to AYA cancer survivors and matched AYA without a previous cancer diagnosis, respectively. The odds for overall pregnancy complications (odds ratio [OR], 1.09; 95% confidence interval [CI], 1.01-1.18) and overall adverse obstetric outcomes (OR, 1.07; 95% CI, 1.01-1.13) were significantly increased in survivors compared with matched AYA without a previous cancer diagnosis. Specifically, cancer survivorship was associated with an increased risk of preterm labour, labour induction, and threatened abortion or threatened labour requiring hospitalisation. AYA cancer survivors are at increased risk for pregnancy complications and adverse obstetric outcomes. Efforts to integrate individualised care into clinical guidelines for preconception and prenatal care should be thoroughly explored.

O-115 Fertility preservation or egg donation for hereditary cancer syndromes?

Abstract Individuals with hereditary cancer syndromes are at risk of developing multiple tumours and, therefore, undergo life-long surveillance procedures and risk-reducing and/or therapeutic surgeries. Knowledge and testing for hereditary cancer susceptibility genes is rapidly spreading, often performed at the first cancer diagnosis. Different physical, psychosocial, ethical and economic considerations need to be taken into account when deciding on reproductive options in individuals with a hereditary cancer syndrome. The psychosocial impact of genetic predisposition to cancer may be particularly problematic and still represents an ongoing challenge for the professional taking care of these patients. In fact, worries about passing on a genetic risk for cancer to offspring are concerns expressed by the 65% of female young adult cancer survivors when specifically interviewed. At cancer diagnosis, fertility preservation procedures represent an effort to retain the opportunity to have genetically related children. Unfortunately, oocytes, embryo or ovarian cortex cryopreservation do not guarantee live birth. The success rates of these procedures are highly dependent on age, number of oocytes cryopreserved and may be influenced by other medical, lifestyle and (future) male factors. In addition, carriers of pathogenetic gene variants for cancer predisposition should also be thoroughly counselled about preimplantation genetic testing (PGT), a technique allowing the interruption of passing on the gene associated to cancer risk. However, this option inevitably lowers the efficacy of fertility preservation interventions in terms of future pregnancies. Egg donation is a spreading procedure with higher success rates than fertility preservation techniques. This approach allows individuals to avoid undergoing oocytes retrieval or ovarian tissue cryopreservation surgery, thus avoiding procedural risks (infection, haemorrhage, ovarian hyperstimulation syndrome) and postponement of oncological treatments. On the other side, offspring will not have a genetic link with recipient and the beneficial psychological role of fertility preservation would be missing. In fact, several recent studies have underlined the message of hope that is indirectly perceived by oncological patients when counselled for fertility preservation. Moreover, counselling on the possibility of egg donation is challenging at the time of cancer diagnosis. Making the right reproductive choice in carriers of hereditary cancer syndromes is a dilemma which can’t be solved generalizing. Even patients’ attitude could be different according to the time of counselling, whether is at cancer diagnosis or at the genetic predisposition diagnosis in healthy carriers. Egg donation should be considered in the available armamentarium. The complexity of the topic needs a personalized and multidisciplinary counselling.

Caring for Children in Relation to Financial Hardship, Advance Care Planning, and Genetic Testing Among Adolescent and Young Adults with Cancer.

Purpose: When a cancer diagnosis coincides with caring for children, it may influence the financial impacts of cancer and decisions to pursue advance care planning (ACP) or genetic testing. We examined associations between caring for children and financial hardship, ACP, and genetic testing among female adolescent and young adult (AYA) cancer survivors in North Carolina and California. Methods: Participants were diagnosed at ages 15-39 years with breast, melanoma, gynecologic, lymphoma, or thyroid cancer during 2004-2016. We estimated adjusted prevalence differences (aPDs) and ratios (aPRs) for each outcome by child caring status using marginal structural binomial regression models. Results: Among 1595 women ages 19-54 years at survey (median = 7 years since diagnosis), 819 (51.3%) reported that they were caring for children at diagnosis. Women caring for children had a higher prevalence of material financial hardship (e.g., medical debt; 30% vs. 21.9%; aPD = 9%, 95% confidence interval [CI]: 3 to 14; aPR = 1.39, 95% CI: 1.12 to 1.72) but similar levels of psychological financial hardship compared to noncaregivers. Women caring for children were more likely to complete ACPs (42.2% vs. 30.7%; aPD = 9%, 95% CI: 3 to 16; aPR = 1.30, 95% CI: 1.08 to 1.57). Among the 723 survivors of breast, endometrial, and ovarian cancer, the prevalence of genetic testing was higher among women caring for children (89%) than noncaregivers (81%); this difference was not statistically significant. Conclusion: Women caring for children at diagnosis may be at elevated risk for adverse financial outcomes and may benefit from additional financial navigation support. Childcare responsibilities may further complicate health decision-making for AYAs diagnosed with cancer.

(010) Correlates of Sexual Dysfunction in Young Adult Cancer Survivors: A Project REACH Study

Abstract Introduction Cancer treatment early in life contributes to a wide range of late effects such as sexual dysfunction, fatigue, sleep disturbances, and widespread pain. Although these concerns have been found to be related in older survivors, research is limited in young adult cancer survivors (YACS), particularly using validated measures of sexual dysfunction. Objective The current study aims to address this gap in research by describing relationships between sexual dysfunction and fatigue, sleep, and pain in YACS. Methods 164 young women (aged 18-39) previously treated for pediatric cancer completed self-report measures on sexual function, fatigue, sleep, and pain through Project REACH, a prospective cohort study. Sexual function was assessed using the Female Sexual Function Index (FSFI-6); participants were classified as experiencing significant sexual dysfunction if they scored ≤ 19 on this measure. Participants also completed the Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F) questionnaire, the Pittsburgh Sleep Quality Index (PSQI), and items adapted from the Brief Pain Inventory. Of note, lower FACIT-F, higher PSQI, and higher pain scores represent more impaired functioning. T-tests were used to compare participants with and without sexual dysfunction on fatigue (FACIT-F total score), sleep (PSQI total score), and pain (days of severe pain in the last week). A logistic regression was also performed to understand the effects of fatigue, sleep, and pain on the likelihood that participants would have sexual dysfunction. Results Over half (56%) of participants were classified as experiencing significant sexual dysfunction. Participants with sexual dysfunction had significantly more severe fatigue (p&amp;lt;.001), significantly worse sleep (p=.02), and significantly more days of severe pain (p=.006) than those without sexual dysfunction. The logistic regression model with fatigue, sleep, and pain was significant (p&amp;lt;.001) and correctly classified 69% of participants. In this model, more severe fatigue was significantly associated with an increased likelihood of having sexual dysfunction (OR=0.93, 95% CI [0.88-0.98]). More frequent severe pain was associated with an increased likelihood of having sexual dysfunction (OR=2.49, 95% CI [0.99-6.28]), although this finding was only marginally significant (p=.053). Sleep was not significantly associated with sexual dysfunction in the model. Conclusions As hypothesized, female YACS with sexual dysfunction had higher levels of fatigue, worse sleep, and more frequent severe pain than those without sexual dysfunction. However, when included in a logistic model, fatigue but not sleep was significantly associated with an increased likelihood of sexual dysfunction. This suggests that consistent with previous research on cancer survivors, fatigue in this population is more than simply the result of poor sleep. Fatigue may need to be directly addressed to improve sexual function in YACS. Although only marginally significant, overall pain may also contribute to sexual dysfunction in this population; as severe pain was infrequent and the sample small, future research should examine this relationship in larger samples. Additionally, as the current study examined general pain, more research is necessary to determine whether sexual or non-sexual pain is driving the potential relationship between sexual dysfunction and frequency of severe pain. Disclosure No

A qualitative study on self‐image, mental well‐being and fertility among female young adult childhood cancer survivors

AbstractIntroductionYoung female adult childhood cancer survivors have frequently been reported to be concerned about their health, in particular their future fertility. The aim of this study was to examine how self‐image, mental health and perceptions of the fertility of young female adults are affected by the illness.MethodsA qualitative study with interviewer‐administered semistructured questions was performed from May 2018 to October 2020 at Sahlgrenska University Hospital, Sweden. Fourteen women participated in the study. The median age of the participants was 27 (25–31) years.ResultsThe interviews were recorded and analysed inductively by a thematic approach. Forty‐one codes were created, of these 21 initial codes were found to be related to the aim of the present study. Subsequently, four broad themes were created and these were reanalysed and constituted three main themes, resulting in the labelling: ‘An experience for better and worse’, ‘An everyday life similar and yet different from peers’ and ‘An uncertain fertility’, and a relevant number (11) of inclusive subthemes. Participants expressed that the experience of surviving childhood cancer both strengthened and impaired their everyday life and implied the lack of information about fertility.ConclusionsAlthough a long time, over 10 years, had passed since the cancer treatment for all participants, the experiences of the illness were still present in their lives, both for better and worse. Healthcare workers need to keep this complexity in mind when facing young childhood cancer survivors. Thus, there is a need for individualized support regarding fertility and mental health.

Pregnancy outcomes among female childhood, adolescent, and young adult cancer survivors assessed using internet-based nationwide questionnaire surveys in Japan

Objective Female cancer survivors planning to become pregnant are concerned about the impact of cancer treatment on their ability to maintain normal pregnancy and the negative impact on their offspring. However, studies on the pregnancy outcomes of cancer survivors in Japan are limited. Therefore, this study aimed to investigate the pregnancy outcomes of female cancer survivors by comparing them with women without a history of malignant tumors in Japan. Methods This cross-sectional study included 3308 subjects, based on an internet-based questionnaire (self-reported) survey conducted in Japan. Differences in pregnancy outcomes, including multiple pregnancies, stillbirth, preterm birth (PTB), and infant birthweight, between cancer survivors and subjects without a history of malignant tumors, were evaluated using a generalized linear mixed-effects model with adjustment for possible confounding factors. Results Of 3308 subjects included in this study, 629 (19.0%) were cancer survivors, among whom cervical (40.4%), breast (19.1%), and thyroid (7.0%) malignancies were most frequent. 71 (2.2%) and 53 (1.6%) participants had a history of multiple pregnancies and stillbirth, respectively; 385 (11.8%), 179 (5.5%), and 137 (4.2%) participants, respectively, had histories of PTB at less than 37, 34, and 32 weeks of gestation. Further, 302 (10.7%), 326 (11.6%), and 330 (11.7%) participants delivered to low birthweight (LBW), small-for-gestational-age (SGA), and large-for-gestational-age (LGA) infants, respectively. Subjects with a history of cervical or breast cancers had significantly higher odds of PTB at <37 weeks of gestation (adjusted odds ratios [ORs], 1.87 [95% CI: 1.25–2.81] and 2.61 [95% CI: 1.77–3.86], respectively), preterm LBW infants (adjusted ORs, 2.70 [95% CI: 1.39–5.24] and 2.76 [95% CI: 1.03–7.38], respectively), and LGA infants (1.98 [95% CI: 1.36–2.89] and 1.99 [95% CI: 1.14–3.49], respectively), compared to those without a history of a malignant tumor. Subjects with a history of thyroid cancer had significantly higher odds of stillbirth (adjusted OR, 5.11 [95% CI: 1.11–23.5]). Conclusion Cancer survivors had a higher risk of adverse pregnancy outcomes than those without a history of malignant tumors in Japan. Healthcare providers should consider the high likelihood of adverse pregnancy outcomes during preconception counseling for cancer survivors.

The effect of changing pregnancy intentions on preconception health behaviors: a prospective cohort study

PurposePregnancy intentions are associated with preconception health behaviors but are understudied among female adolescent and young adult (AYA) cancer survivors. Preconception health is critical for survivors because they face unique risks to fertility and pregnancy from late effects of cancer treatments. This study prospectively assessed the effect of pregnancy intention on physical activity (PA) and smoking behaviors among female AYA survivors.MethodsA cohort of 1049 female AYA survivors were recruited between 2013 and 2017. Participants were 18–39 years and had completed primary cancer treatment. Longitudinal mixed effects analysis was conducted on participants who completed at least 2 of 4 questionnaires over 1.5 years. Two measures were used to capture multiple dimensions of pregnancy intention. The pregnancy intention score (PIS) captured wanting and planning dimensions and represented a scaled response of low to high intention. The trying dimension captured urgent intention and ranged from not trying, ambivalent (neither attempting nor avoiding pregnancy), and trying now. Intention change was assessed between each consecutive time points. Final analysis was conducted with multiple imputations.ResultsSurvivors with increased intention measured by trying was associated with increased PA over time (adjusted B [95%CI]: 0.3 [0.01, 0.5]) compared to survivors with no changes or decreased trying intention. PIS was not significantly associated with preconception behaviors. No measure of intention was associated with smoking behavior.ConclusionsIncreasingly urgent pregnancy intention (trying dimension) was associated with higher preconception PA.Implications for cancer survivorsScreening for immediate intentions can identify AYA survivors in need of early preconception health promotion.

Metacognitions associated with reproductive concerns: A cross-sectional study of young adult female cancer survivors in China.

ObjectiveCancer and its treatments affect patients’ fertility potential. This study examined the prevalence of reproductive concerns and their relationship with metacognitions among Chinese young adult female cancer survivors (YAFCS).MethodsA total of 318 YAFCS (aged 18–39) completed an online survey from March to December 2021. Participants reported sociodemographic characteristics, reproductive concerns and metacognitions. Reproductive concerns were measured using the Reproductive Concerns after Cancer scale (RCAC), and metacognitions were measured by the Short Form of Metacognitions Questionnaire (MCQ-30). We used Pearson correlation analysis to examine associations between metacognitions and reproductive concerns across multiple domains and multivariable linear regression to determine the influencing factors of reproductive concerns.ResultsThe mean score of reproductive concern among YAFCS was 49.97 ± 12.52. A total of 57.9% of participants reported a high level of concern regarding at least one dimension of reproductive concerns, and they were most concerned about their child’s health and least concerned about partner disclosure of fertility status. We also found a moderate association between RCAC and MCQ-30 scores (r = 0.408, p < 0.001). In multivariate analyses, metacognitions, especially negative metacognitive beliefs had an impact on reproductive concerns among YAFCS (p < 0.001).ConclusionHigher reproductive concerns were associated with higher metacognitions among YAFCS, especially with negative metacognitive beliefs. Oncology professionals should pay attention to assessing reproductive concerns in patients who want to have children or who have no children. Moreover, metacognitive beliefs may be an intervention target for alleviating reproductive concerns among YAFCS.

Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing.

BackgroundOwing to gonadotoxic cancer treatments, young adult female survivors often report uncertainty about their fertility, reproductive potential, and family-building options after treatment. Roadmap to Parenthood is a web-based decision aid and planning tool for family building after cancer.ObjectiveAs part of a patient-centered development process, this study evaluated the usability of the decision aid website to inform design modifications and improve user experience.MethodsIn total, 2 rounds of usability testing were conducted with the target population of young adult female cancer survivors. During the testing sessions, participants viewed the website twice; first, as a think-aloud exercise, and second, while a researcher interrupted at key points to obtain user feedback. Quantitative and qualitative data were collected to assess website usability. Quantitative measures included the System Usability Scale, WebQual, and eHealth Impact Questionnaire. An exit interview with open-ended questions gathered feedback on likes and dislikes and suggestions for improvement.ResultsParticipants (N=10) were young adult women, with average age of 30.9 (SD 4.51) years, and average time since treatment was 4.44 (SD 3.56) years. Website usability scores improved on the System Usability Scale from “acceptable” in round 1 to “excellent” in round 2 after making design changes based on user feedback (scores of 68 and 89.4, respectively). WebQual scores showed similar improvement from round 1 to round 2 of testing (mean 5.6 to 6.25; range 1-7). On the eHealth Impact Questionnaire, the information and presentation of the website was perceived as comprehensive, easy to understand, and trustworthy. Participants also reported improved confidence to discuss and manage fertility and family-building issues and felt encouraged to play a more active role in managing their fertility. In all, 3 usability themes were identified from the qualitative feedback: ease of use, visibility and navigation, and informational content and usefulness. Overall feedback was positive, and participants reported intentions to use the decision aid website in the future. In total, 10% (1/10) of the participants reported negative emotions when learning about infertility risks and potential family-building challenges.ConclusionsWebsite usability improved after design changes were made in response to user feedback. Young adult female survivors reported positive views about the website and indicated that the decision aid would be useful in decision-making about family building after cancer. Future studies will include further design modifications to consider the emotional experiences of users and any additional navigational features or content to optimize the ease of use and support provided by the tool.

Sexual Health Problems and Their Association with Psychological Distress: Investigating the Role of Dyadic Coping Behaviors among Young Adult Breast Cancer Survivors and Partners

ABSTRACT Introduction Cancer-related sexual health problems are among the most prevalent and distressing consequences of breast cancer. Representative studies have shown almost one-half of adult U.S. women reporting sexual dysfunction; among female young adult breast cancer survivors (YABCS) this figure approaches an estimated 75%. When untreated, sexual problems can persist throughout survivorship and negatively affect physical and psychological health. Despite the prevalence of sexual health concerns among this population and the negative impact on intimate relationships, the extant literature has marginally considered the role of interpersonal factors. Objective The present work utilized a dyadic perspective assessing emotional distress, satisfaction with sexual relationship, sexual functioning, and relationship satisfaction among YABCS and their partners in the first-year post-diagnosis. Using the Systemic-Transactional Model of Dyadic Coping theoretical framework, it was additionally assessed whether dyadic coping behaviors moderated the relationship between sexual health and distress. Methods YABCS (n=83) and partners (n=40) from an NCI-designated cancer center completed a cross-sectional survey. Validated questionnaires of psychological distress (PHQ-9), relationship functioning (DAS-7), satisfaction with sexual relationship (GMSEX), sexual function (IIEF, FSFI), and dyadic coping [Dyadic Coping Inventory, (DCI)] were administered. Descriptive statistics and independent sample t-tests were used to assess mean differences between survivors and partners’ measures. In addition, the moderating role of dyadic coping on the relationship between sexual health measures and psychological distress was assessed using the PROCESS macro. Results In the present sample, more than one-half of YABCS scored above the cut-off for clinically significant sexual dysfunction (51.6%), compared to 20% of the partners. Both patients and partners reported elevated scores for relationship satisfaction, positive dyadic coping behaviors and low distress. Significant differences were detected in satisfaction with sexual relationship and stress communication, with YABCS reporting lower satisfaction (p&amp;lt;.05), higher self- reported stress communication (p&amp;lt;.01) and male partners rating higher women's engagement in stress communication behaviors (p&amp;lt;.05). Common dyadic coping moderated the relationship between sexual functioning subscales and distress in male partners, with higher distress for those reporting low levels of shared coping behaviors. Similarly, stress communication by the partner moderated the relationship between desire and distress. Among YABCS partner-reported dyadic coping behaviors moderated the relationship between vaginal lubrication and distress, with lower rates of distress for YABCS reporting elevated partner stress communication. Conclusions Despite elevated relationship satisfaction, a substantial subgroup of YABCS and partners experience impaired sexual functioning. Our study provides emerging evidence about the role of interpersonal factors on the relationship between sexual health and distress among YABCS and partners. Specifically, the study reveals that perceived partner stress communication and common dyadic coping behaviors could be clinical intervention targets. Additional research is needed to confirm these findings in larger dyadic samples, including cancer types that are not sex-based. Healthcare providers serving YABCS and their partners should utilize standardized sexual health tools and screening protocols to identify and address survivor, partner, and couple-based factors that can alleviate the impact of sexual health problems on psychological well-being during cancer survivorship. Disclosure No

Association between pregnancy intention and preconception health behaviors.

Female adolescent and young adult (AYA) cancer survivors face higher infertility and pregnancy risks than peers with no cancer history. Preconception health behaviors such as physical activity (PA), tobacco smoking, and alcohol intake influence reproductive outcomes. In general populations, pregnancy intention is positively associated with healthy preconception behaviors, but it has not been studied among AYA survivors. The authors hypothesized that higher pregnancy intention would be associated with healthier behaviors, especially among AYA survivors with perceived infertility risk. A cross-sectional analysis was conducted with data collected between 2013 and 2017 from 1071 female AYA survivors aged 18 to 39 years who had completed their primary cancer treatment and enrolled in an ovarian function study. Self-reported intention dimensions were measured as a pregnancy intention score (PIS) and trying now to become pregnant. Multivariable linear (PA), binary (smoking), and ordinal (alcohol use) logistic regressions were used to estimate associations between intentions and preconception behaviors, with adjustments made for demographic and cancer characteristics. Effect modification by perceived infertility risk was assessed. The mean PIS was 1.1 (SD, 0.77) on a 0 to 2 scale (2 = high intention), and 8.9% were attempting pregnancy now. A higher PIS was associated with increased PA (β, 0.08; 95% CI, 0.11-1.04), whereas ambivalence in pregnancy intention was associated with lower alcohol consumption (odds ratio, 0.72; 95% CI, 0.55-0.95). Pregnancy intentions were not associated with smoking. Perceived infertility risk strengthened the relationship between PIS and PA (P < .05). Pregnancy intentions were associated with some healthier preconception behaviors in AYA survivors. Medical professionals caring for AYA survivors may consider pregnancy intention screening to guide conversations on preconception health.

Treatment-related fertility impairment in long-term female childhood, adolescent and young adult cancer survivors: investigating dose-effect relationships in a European case-control study (PanCareLIFE).

Which chemotherapeutic agents and body site-specific radiation fields are dose-dependently associated with an increased risk of fertility impairment in long-term female childhood, adolescent and young adulthood (CAYA) cancer survivors? Busulfan, lower abdominal radiotherapy (RT) and total body irradiation (TBI) seem to be associated with fertility impairment at any dose, whereas gonadotoxicity of melphalan and procarbazine is suggested at medium/high (>140 mg/m2) or high dose (>5600 mg/m2) therapy, respectively. Several treatment-related fertility deficits, as assessed by both self-reported outcomes and hormonal markers are known to occur following treatment of CAYA cancer. However, knowledge regarding precise dose-related estimates of these treatment-related risks are scarce. The current case-control study was nested within the PanCareLIFE cohort study. In total, 1332 CAYA survivors from 8 countries, 9 institutions and 11 cohorts, participated in and contributed data to the study. All participants were female 5-year CAYA cancer survivors. In total, 450 cases (fertility impaired survivors) and 882 matched controls (not fertility impaired survivors) were included. Fertility impairment was defined using both questionnaire data (primary or secondary amenorrhea; use of artificial reproductive techniques; unfulfilled wish to conceive) and hormonal data (FSH and anti-Müllerian hormone (AMH)). Multivariable logistic regression models were used to investigate the effect of (i) alkylating agent exposure, and (ii) dose categories for individual chemotherapeutic agents and for RT-exposed body sites. A positive dose-effect relationship between cyclophosphamide equivalent dose (CED) score and fertility impairment was found, with survivors with a CED score > 7121 mg/m2 being at a significantly increased risk of fertility impairment (odds ratio (95% CI) = 2.6 (1.9-3.6) P < 0.001). Moreover, cumulative dose variables of the following treatments were significantly associated with fertility impairment: busulfan, carmustine, cyclophosphamide, melphalan, procarbazine, lower abdominal RT and TBI. Busulfan, lower abdominal RT and TBI seem to be associated with fertility impairment at any dose, whereas gonadotoxicity of melphalan and procarbazine is suggested at medium/high (>140 mg/m2) or high dose (>5600 mg/m2) therapy, respectively. Our study may have been subject to selection bias since data from about half of the original base cohorts were available for the current study. This could impact the generalizability of our study results. We identified survivors at high risk for fertility impairment and, consequently, for a reduced or even absent reproductive life span. Both girls and young women who are about to start anti-cancer treatment, as well as adult female survivors, should be counselled about future parenthood and referred to a reproductive specialist for fertility preservation, if desired. This study has received funding from the European Union's Seventh Framework Programme for research, technological development and demonstration under grant agreement no. 602030. There are no competing interests. n/a.

Beyond Premature Ovarian Insufficiency: Staging Reproductive Aging in Adolescent and Young Adult Cancer Survivors.

Although stages of reproductive aging for women in the general population are well described by STRAW+10 criteria, this is largely unknown for female adolescent and young adult cancer survivors (AYA survivors). This work aimed to evaluate applying STRAW + 10 criteria in AYA survivors using bleeding patterns with and without endocrine biomarkers, and to assess how cancer treatment gonadotoxicity is related to reproductive aging stage. The sample (n = 338) included AYA survivors from the Reproductive Window Study cohort. Menstrual bleeding data and dried-blood spots for antimüllerian hormone (AMH) and follicle-stimulating hormone (FSH) measurements (Ansh DBS enzyme-linked immunosorbent assays) were used for reproductive aging stage assessment. Cancer treatment data were abstracted from medical records. Among participants, mean age 34.0 ± 4.5 years and at a mean of 6.9 ± 4.6 years since cancer treatment, the most common cancers were lymphomas (31%), breast (23%), and thyroid (17%). Twenty-nine percent were unclassifiable by STRAW + 10 criteria, occurring more frequently in the first 2 years from treatment. Most unclassifiable survivors exhibited bleeding patterns consistent with the menopausal transition, but had reproductive phase AMH and/or FSH levels. For classifiable survivors (48% peak reproductive, 30% late reproductive, 12% early transition, 3% late transition, and 7% postmenopause), endocrine biomarkers distinguished among peak, early, and late stages within the reproductive and transition phases. Gonadotoxic treatments were associated with more advanced stages. We demonstrate a novel association between gonadotoxic treatments and advanced stages of reproductive aging. Without endocrine biomarkers, bleeding pattern alone can misclassify AYA survivors into more or less advanced stages. Moreover, a large proportion of AYA survivors exhibited combinations of endocrine biomarkers and bleeding patterns that do not fit the STRAW + 10 criteria, suggesting the need for modified staging for this population.

Material and psychological financial hardship related to employment disruption among female adolescent and young adult cancer survivors.

The importance of addressing adverse financial effects of cancer among adolescents and young adults (AYAs) is paramount as survival improves. In the current study, the authors examined whether cancer-related employment disruption was associated with financial hardship among female AYA cancer survivors in North Carolina and California. AYA cancer survivors identified through the North Carolina Central Cancer Registry and the Kaiser Permanente Northern/Southern California tumor registries responded to an online survey. Disrupted employment was defined as reducing hours, taking temporary leave, or stopping work completely because of cancer. Financial hardship was defined as material conditions or psychological distress related to cancer. Descriptive statistics and chi-square tests were used to characterize the invited sample and survey respondents. Marginal structural binomial regression models were used to estimate prevalence differences (PDs) and 95% confidence intervals (95% CIs). Among 1328 women employed at the time of their diagnosis, women were a median age of 34 years at the time of diagnosis and 7 years from diagnosis at the time of the survey and approximately 32% experienced employment disruption. A substantial percentage reported financial hardship related to material conditions (27%) or psychological distress (50%). In adjusted analyses, women with disrupted employment had a 17% higher burden of material conditions (95% CI, 10%-23%) and an 8% higher burden of psychological distress (95% CI, 1%-16%) compared with those without disruption. Financial hardship related to employment disruption among female AYA cancer survivors can be substantial. Interventions to promote job maintenance and transition back to the workforce after treatment, as well as improved workplace accommodations and benefits, present an opportunity to improve cancer survivorship.

"Looking at future cancer survivors, give them a roadmap": addressing fertility and family-building topics in post-treatment cancer survivorship care.

Fertility is an important issue among adolescent and young adult female (AYA-F) cancer survivors. This study examined AYA-F survivors' unmet needs and recommendations for care to address fertility/family-building in post-treatment survivorship. Semi-structured interviews (45-60min) explored themes related to fertility and family-building after cancer. Coding categories were derived based on grounded theory methods. Themes were identified through an iterative process of coding and review. Participants (N = 25) averaged 29years old (SD = 6.2; range, 15-39) were primarily White and well educated, and averaged 5.81years post-treatment (SD = 5.43); 32% had undergone fertility preservation (pre- or post-cancer). Six recommendations for improving care were identified: addressing patient-provider communication, need to provide informational, emotional, and peer support, financial information, and decision-making support. AYA-Fs believed the best way to learn about resources was through online platforms or doctor-initiated discussions. Telehealth options and digital resources were generally considered acceptable. Face-to-face interactions were preferred for in-depth information, when AYA-Fs anticipated having immediate questions or distressing emotions, and with concerns about Internet security. Thus, a combined approach was preferred such that information (via web-based communication) should be provided first, with follow-up in-person visits and referrals when needed. Informational and support services are needed to better educate patients about gonadotoxic effects and options to have children after cancer treatment is completed. Future work should evaluate how to best support oncology providers in meeting the needs of survivors concerned about fertility and family-building including referral to clinical specialties and supportive resources.

Mental Health Outcomes in Adolescent and Young Adult Female Cancer Survivors of a Sexual Minority.

Purpose: Sexual minority (SM) individuals experience higher rates of anxiety and depression. Previous research on mental health disparities for SM cancer survivors has largely focused on adult survivors; however, studies are limited in the adolescent and young adult (AYA) population. This study's objective is to compare depression and anxiety symptoms between AYA, female cancer survivors who identify as an SM and those who identify as heterosexual. Methods: A cross-sectional analysis of 1025 AYA survivors aged 18-40 years (2015-2017) was performed. Patients self-reported SM identification and depression and anxiety symptoms, as measured by the Patient Health Questionnaire (PHQ8) and Generalized Anxiety Disorder Scale (GAD7), respectively. Multivariable logistic regression tested associations between SM identification and depression and anxiety. Results: Sixty-four participants (6%) identified as an SM. In adjusted analyses, SM participants had 1.88 higher odds of anxiety (odds ratio [OR] 1.88, confidence interval [95% CI] 1.05-3.35, p = 0.033) compared with heterosexual participants. SM participants did not have significantly higher odds of depression (OR 1.36, CI 0.75-2.47, p = 0.31). More social support was significantly associated with lower odds of depression (OR 0.91, CI 0.89-0.93, p < 0.001) and anxiety (OR 0.93, CI 0.91-0.94, p < 0.001). Conclusions: AYA cancer survivors identifying as an SM had nearly twice the odds of anxiety, with social support that is protective for both anxiety and depression. While mental health screening is recommended throughout the cancer care continuum, these data support the need for reliable screening, clinician awareness of increased vulnerability in the AYA, SM survivor population, and clinician training on culturally competent care and generation of evidence-based interventions.