"Infertility Isn't a Choice!": Conversations on Twitter about the Financial Burden of Oncofertility Care.

This study aimed to evaluate how the adolescent and young adult (AYA) cancer community utilized Twitter to discuss the financial challenges of oncofertility care and to advocate for change. Tweets related to oncofertility and finances (n = 166), collected over a 12-week time period encompassing AYA Cancer Awareness Week, were thematically analyzed. Conversations highlighted how the high cost of care contributed to already high emotional and social distress. Proposed actions included providing timely information more equitably, improving access to financial support, and continued advocacy of policy changes to improve access to oncofertility care. Future research can explore the potential impact on policy change and clinical care.

Health Care Provider Perceptions of Using Social Media to Improve Sexual Health for Adolescent and Young Adult Cancer Survivors.

This study explored (1) health care provider (HCP) perceived barriers and facilitators to social media communication about sexual health with adolescent and young adult survivors, and (2) strategies that can help HCPs navigate social media use for this purpose. Thematic analysis of 11 semistructured HCP interviews resulted in four themes and suggests that social media platforms offer a promising avenue to foster sexual health communication but that resources and training are needed to improve HCP capacity to use this approach ethically and effectively. Future studies are needed to determine specific communication strategies and whether these strategies would lead to improved outcomes.

Opening the Conversation: study protocol for a Phase III trial to evaluate a couple-based intervention to reduce reproductive and sexual distress among young adult breast and gynecologic cancer survivor couples.

BACKGROUND: Reproductive and sexual health (RSH) concerns are common and distressing for young adults diagnosed with breast and gynecologic cancer and their partners. This study evaluates the efficacy of a virtual couple-based intervention called Opening the Conversation (OC). The OC intervention is grounded in theory and evidence-based practice and was adapted to improve coping and communication specifically in relation to RSH concerns after cancer. METHODS: This Phase III trial is conducted in a fully remote setting and enrolls young adult couples (current age 18-44 years) with a history of breast or gynecologic cancer (stage 1-4, diagnosed under age 40) within the past 6 months to 5 years. Eligible dyads are recruited from across the USA. The target sample size is 100 couples. Dyads are randomly assigned to receive either the 5-session OC intervention or a 4-session active control intervention (Side by Side). The primary outcomes are change in reproductive distress and sexual distress. Secondary outcomes include communication about reproductive concerns, communication about sexual concerns, depressive symptoms, sexual function, relationship quality, relationship intimacy, sexual satisfaction, self-efficacy to communicate about sex and intimacy, and quality of life. An exploratory aim examines whether dyadic coping and communication quality mediate intervention effects on survivors' and partners' reproductive distress or sexual distress. Self-report outcome measures are assessed for both groups at baseline (T1), 2 weeks post-treatment (T2), and 3 months post-treatment (T3). DISCUSSION: Despite the importance of RSH for quality of life for young adult cancer survivors and their partners, evidence-based interventions that help couples navigate RSH concerns are lacking. This randomized controlled trial will determine the efficacy of a novel couple-based intervention to reduce distress related to RSH concerns for younger couples after breast or gynecologic cancer, in comparison to an active control intervention. TRIAL REGISTRATION: ClinicalTrials.gov NCT04806724. Registered on Mar 19, 2021.

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.

Adapting a Theory-Informed Intervention to Help Young Adult Couples Cope With Reproductive and Sexual Concerns After Cancer.

OBJECTIVE: Most young adults diagnosed with breast or gynecologic cancers experience adverse reproductive or sexual health (RSH) outcomes due to cancer and its treatment. However, evidence-based interventions that specifically address the RSH concerns of young adult and/or LGBTQ+ survivor couples are lacking. Our goal is to develop a feasible and acceptable couple-based intervention to reduce reproductive and sexual distress experience by young adult breast and gynecologic cancer survivor couples with diverse backgrounds. METHODS: We systematically adapted an empirically supported, theoretically grounded couple-based intervention to address the RSH concerns of young couples coping with breast or gynecologic cancer through integration of stakeholder perspectives. We interviewed 11 couples (22 individuals) with a history of breast or gynecologic cancer to review and pretest intervention materials. Three of these couples were invited to review and comment on intervention modifications. Content experts in RSH and dyadic coping, clinicians, and community advisors (one heterosexual couple and one LGBTQ+ couple, both with cancer history) participated throughout the adaptation process. RESULTS: Findings confirmed the need for an online, couple-based intervention to support young couples experiencing RSH concerns after breast or gynecologic cancer. Qualitative themes suggested intervention preferences for: (1) A highly flexible intervention that can be tailored to couples' specific RSH concerns; (2) Active steps to help members of a dyad "get on the same page" in their relationship and family building plans; (3) A specific focus on raising partners' awareness about how cancer can affect body image and physical intimacy; and (4) Accessible, evidence-based information about RSH for both partners. These results, along with feedback from stakeholders, informed adaptation and finalization of the intervention content and format. The resulting virtual intervention, Opening the Conversation, includes five weekly sessions offering training to couples in communication and dyadic coping skills for addressing RSH concerns. CONCLUSION: The systematic adaptation process yielded a theory-informed intervention for young adult couples facing breast and gynecological cancers, which will be evaluated in a randomized controlled trial. The long-term goal is to implement and disseminate Opening the Conversation broadly to reach young adult couples with diverse backgrounds who are experiencing RSH concerns in cancer survivorship.

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.

The psychosocial needs of underserved breast cancer survivors and perspectives of their clinicians and support providers.

PURPOSE: Breast cancer survivors (BrCS) experience many psychosocial difficulties following treatment, leading to an increased risk of psychological distress compared to the general population. This is especially true for underserved BrCS whose unmet supportive care needs can result in worse physical and mental health outcomes. This qualitative study compared healthcare and support providers' perceptions of BrCS' needs to survivors' perceptions of their own needs. METHODS: Semi-structured in-depth interviews were conducted with 25 underserved BrCS and 20 cancer survivorship stakeholders identified using purposeful sampling. Using the constant comparison method and content analysis, data were analyzed via an iterative process of coding and discussion. Data were summarized according to three intermediate and proximal themes mentioned by both stakeholders and survivors: (1) psychosocial needs of cancer survivors, (2) support, and (3) benefit finding/positive feelings about cancer. Demographic data were analyzed by calculating descriptive statistics. RESULTS: There was consistency in providers' and survivors' perceptions of post-treatment mood changes, financial burden, familial stress, and physical changes. Providers and survivors differed in perceptions of BrCS' preferred sources of care and support, effects of cancer treatment on body image, the effects of fear of cancer recurrence on follow-up care, and benefit finding. CONCLUSIONS: This study provides valuable insight into areas in which healthcare and support providers' perceptions may differ from underserved BrCS' lived experiences. Results from this study can be used to develop interventions and inform healthcare and support providers on how to provide high-quality care to underserved BrCS.

Adaptation and feasibility of a multimodal mindfulness-based intervention to promote sexual health in cancer survivorship.

Sexual health concerns after cancer are common and distressing, and mindfulness-based interventions (MBIs) are effective in supporting women experiencing these concerns. The goals of this study were to: (i) systematically adapt and document modifications to a mindfulness-based sexual health intervention for cancer survivors in a community setting and (ii) assess feasibility, appropriateness, and acceptability, and to identify strategies to increase reach for future implementation and dissemination. Following the ADAPT-ITT model, we first conducted key informant interviews with 10 female cancer survivors and four healthcare providers to obtain feedback on perceived need and feasibility of the intervention approach, and preferences for content, structure, and delivery format. This feedback informed initial intervention adaptations, which we then pretested with five female cancer survivors. We tracked and coded intervention adaptations. Key informant cancer survivors and providers confirmed the lack of sexual health services, acceptability of a sexual health MBI, and identified initial adaptations including modifying the intervention for delivery in a community, rather than clinical, setting. Pretest participants (aged 48-57) were survivors of breast (n = 4) and cervical (n = 1) cancer. All participants completed the intervention attending an average of 7.2 of 8 weekly sessions. Qualitative and quantitative results suggest the intervention was feasible, appropriate and acceptable. Engaging stakeholders in the adaptation process is essential for creating a feasible, appropriate, and acceptable intervention. Tracking intervention modifications contributes to our overall understanding of how MBIs can be adapted for new populations and contexts.

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.

Measuring the Multidimensional Reproductive Concerns of Young Adult Male Cancer Survivors.

Purpose: The aims of this study were to adapt the multidimensional Reproductive Concerns After Cancer (RCAC) scale for use with young adult (YA) male cancer survivors, defined as current age 18-35 years and at least 1 year postdiagnosis, and to examine the factor structure, reliability, and validity of the newly adapted RCAC-Male (RCAC-M) scale. Methods: We conducted cognitive interviews with 10 YA male cancer survivors to inform modifications to RCAC item wording. Online surveys were then completed by 170 YA male cancer survivors. We used confirmatory factor analysis to examine structural models of the RCAC-M scale, and assessed reliability and construct validity. Results: The oblique six-factor model of the RCAC-M scale provided the best model fit. Omega total and Revelle's omega total estimates for all six three-item subscales were in the nearly satisfactory to good range (0.69-0.88). As hypothesized, men who wanted to have a baby and men who believed that having a biological child was very important scored higher on at least one RCAC-M subscale. We observed correlations in the expected directions between the RCAC-M and measures of depression and health-related quality of life. Conclusion: The RCAC-M scale is a multidimensional scale that is best represented as a profile of subscale scores. This scale demonstrated good reliability and construct validity and can be used to inform tailored interventions to more effectively address men's reproductive 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.

Revisiting the Reproductive Concerns After Cancer (RCAC) scale.

OBJECTIVE: The aims of this study were to examine the factor structure and reliability of the multidimensional Reproductive Concerns After Cancer (RCAC) scale in a sample of female cancer survivors during their reproductive years, younger than age 45. METHODS: Female reproductive-aged survivors (N = 238; current age, 18 to 44 y) with a variety of cancer diagnoses completed a web-based survey that included the RCAC scale. Three structural models were examined via confirmatory factor analysis: (a) one-factor, (b) higher-order with one second-order factor and six first-order factors, and (c) oblique six-factor. Reliability was examined using omega total and Revelle omega total. RESULTS: Only the oblique six-factor model of the RCAC scale fits well. Omega total and Revelle omega total estimates for all of the six three-item subscales were in the nearly satisfactory to good range (.66 to.87). CONCLUSIONS: The RCAC scale was found to have satisfactory factor structure and reliability when measuring a range of reproductive concerns experienced by female reproductive-aged survivors. The RCAC scale is a multidimensional measure of varying aspects of reproductive concerns, and results suggest that the scale may be best represented as a profile of subscale scores. The subscale scores would be useful for tailoring recommendations and interventions to more effectively address the diverse reproductive concerns of female reproductive-aged survivors.

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.

College Women's Responses to a Celebrity Health Disclosure.

Celebrities can have a powerful influence on people's health-related attitudes and behaviors, often by publicly disclosing their own personal health decisions. In May 2013, Angelina Jolie, an internationally recognized actress, director, and author, wrote an op-ed for the New York Times disclosing her decision to undergo a prophylactic double mastectomy to reduce her risk of breast cancer after learning that she carried the BRCA1 gene mutation. This cross-sectional study examined whether exposure to Angelina Jolie and her mastectomy disclosure and parasocial involvement (PSI) with Angelina Jolie were related to female college students' perceived risk of breast cancer and breast cancer screening intentions. Participants were 198 female undergraduate college students. Data were collected anonymously via an online questionnaire and analyzed using bivariate correlations and hierarchical linear regression analyses. Neither exposure to Angelina and her disclosure nor PSI with Angelina Jolie was related to participants' attitudes or behaviors related to breast cancer. However, having a family history of cancer was associated with more exposure to Angelina Jolie and her disclosure. Findings suggest that exposure to and PSI with a celebrity who has disclosed a health-related message may not be sufficient to motivate young women to change their health-related attitudes and behaviors. Future studies should explore how celebrities disclosing different types of health issues might influence the attitudes and behaviors of young women.

Etiology unknown: Qualitative analysis of patient attributions of causality in scleroderma.

Background: Questions about the etiology of disease can concern patients living with any chronic disease and may impact disease-related adjustment. These causal attributions may be of particular interest when individuals are living with diseases for which etiologies have not been definitively identified, such as scleroderma. This study qualitatively explored patient attributions of causality for scleroderma. Methods: Patients with confirmed diagnoses of scleroderma responded to an open-ended prompt. The cross-sectional sample of scleroderma patients (N = 114) was recruited through registries maintained at the University of California, Los Angeles and University of California, San Diego Schools of Medicine and the Virginia Mason Medical Center. Content analysis was used to analyze the qualitative data and group the responses via an inductively derived codebook using the text analysis tool Dedoose Version 4.5. Results: Patients provided a variety of possible causes for scleroderma, which grouped into seven themes: (1) stress, (2) environment, (3) genetics, (4) medical conditions or surgeries, (5) diet, (6) medications or substance use, and (7) spirituality. Conclusion: Patients' causal attributions for scleroderma were varied, but many patients identified stress as a cause of scleroderma, often focusing on acute or chronic stressors that were present before disease onset. Identifying patient theories of causality for scleroderma can contribute to an increased understanding of disease-related behaviors and adjustment.