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Background: Adolescent and young adult (AYA) females are vulnerable to psychological sequelae following cancer diagnosis and treatment. Fear of cancer recurrence (FCR) is well-documented in cancer survivors, however AYA survivors of breast and gynaecological cancers are less well-studied. Moreover, little is known about scan-related fears and anxiety ('scanxiety') in survivors of any age group., Aims: This study aimed to assess demographic, medical, and quality-of-life correlates of FCR and scanxiety in AYA female breast and gynaecological cancer survivors post-treatment. Additionally, we explored potential shared mechanisms of FCR and scanxiety, including intolerance of uncertainty, bodily threat monitoring, and perceived stress., Methods: AYA breast and gynaecological cancer survivors (N = 115) completed measures of FCR, scanxiety, intolerance of uncertainty, bodily threat monitoring, perceived stress, and quality of life. Bivariate associations and a structural equation model explored relationships between these variables., Results: Both FCR and scanxiety were prevalent, with 84% reporting clinically meaningful FCR and 38% reporting severe FCR. Higher FCR and scanxiety were both associated with poorer quality of life. FCR and scanxiety were moderately associated but not entirely overlapping. Intolerance of uncertainty, bodily threat monitoring, and perceived stress were significantly correlated with both FCR and scanxiety. The structural equation model indicated that bodily threat monitoring is a plausible intermediate variable linking intolerance of uncertainty and FCR, but not scanxiety., Conclusions: FCR and scanxiety are common in AYA survivors of breast and gynaecological cancers, with potentially distinct underlying mechanisms. Interventions targeting intolerance of uncertainty and bodily threat monitoring may reduce FCR, while further research is needed to identify therapeutic targets for scanxiety., (© 2024 The Author(s). Psycho‐Oncology published by John Wiley & Sons Ltd.)

Objective: 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)., Methods: 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., Results: Participants (N = 98) averaged 31 years 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., Conclusions: 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., (© 2024 John Wiley & Sons Ltd.)

Background: 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., Methods: 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., Results: AYA-Fs (N = 111) averaged 31-years-old (SD = 5.49) and 3 years post-treatment (range: 1-23 years); 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., Conclusions: 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., (© 2023 John Wiley & Sons Ltd.)

Objective: A cancer diagnosis and subsequent treatment can disrupt the full spectrum of physical, social, emotional, and functional quality of life. But existing psychological treatments are focused primarily on specific psychological symptoms as opposed to improving the overall patient experience. We studied the feasibility and efficacy of a novel digital intervention targeting patient mindsets-core assumptions about the nature and meaning of illness-designed to improve overall health-related quality of life (HRQoL) in newly diagnosed cancer patients undergoing treatment with curative intent., Methods: Recently diagnosed (≤150 days) adult patients with non-metastatic cancers undergoing systemic treatment (N = 361) were recruited from across the United States to participate in this decentralized clinical trial. Patients were randomized 1:1 to receive the Cancer Mindset Intervention (CMI) or Treatment as Usual (TAU). Participants in the CMI group completed seven online modules over 10 weeks (2.5 h total) targeting mindsets about cancer and the body. The primary outcome was overall HRQoL, and secondary outcomes were coping behaviors and symptom distress., Results: Patients in the CMI group reported significant (p < 0.001) improvements in adaptive mindsets about cancer and the body over time. Compared with the TAU condition, the CMI group reported significant improvements in overall HRQoL (B = 0.60; 95% CI 0.34-0.85; p < 0.001), increased engagement in adaptive coping behaviors (B = 0.03; 95% CI 0.02-0.04; p < 0.001), and reduced distress from physical symptoms (B = -0.29; 95% CI -0.44 to -0.14; p < 0.01). Effect sizes of these changes ranged from d = 0.42-d = 0.54., Conclusion: A brief mindset-focused digital intervention was effective at improving physical, social, emotional, and functional HRQoL, increasing adaptive coping behaviors, and reducing physical symptom distress in newly diagnosed cancer patients., (© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Objective: Scan-related anxiety ("scanxiety") refers to the fear, stress, and anxiety in anticipation of tests and scans in follow-up cancer care. This study assessed the feasibility of Ecological Momentary Assessment (EMA) for real-world, real-time capture of scanxiety using patients' personal smartphone., Methods: Adolescent and Young Adult survivors of childhood cancer were prompted to complete EMA surveys on a smartphone app three times per day for 11 days (33 surveys total) around their routine surveillance scans. Participants provided structured feedback on the EMA protocol., Results: Thirty out of 46 contacted survivors (65%) enrolled, exceeding the preregistered feasibility cutoff of 55%. The survey completion rate (83%) greatly exceeded the preregistered feasibility cutoff of 65%. Participants generally found the smartphone app easy and enjoyable to use and reported low levels of distress from answering surveys. Participants reported significantly more daily fear of cancer recurrence (FCR) and negative affect in the days before compared to the days after surveillance scans, aligning with the expected trajectory of scanxiety. Participants who reported greater FCR and scanxiety using comprehensive measures at baseline also reported significantly more daily FCR around their surveillance scans, indicating validity of EMA items. Bodily threat monitoring was prospectively and concurrently associated with daily FCR, thus warranting further investigation as a risk factor for scanxiety., Conclusions: Findings indicate the feasibility, acceptability, and validity of EMA as a research tool to capture the dynamics and potential risk factors for scanxiety., (© 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: Financial toxicity includes distress and burden from cancer-related costs. Women are more likely to experience worse cancer-related financial outcomes than men. This study evaluated breast and gynecologic cancer patients' subjective experiences of financial toxicity and associations with distress and quality of life (QOL)., Methods: A cross-sectional survey study included measures of financial toxicity (Comprehensive Score for Financial Toxicity [COST] Version 2), distress (Patient Health Questionnaire), and QOL (Functional Assessment of Cancer Therapy). Chi-square, t-tests, and ANOVAs examined bivariate relationships. Two regression models tested associations between financial toxicity and distress and QOL, controlling for covariates. Financial toxicity subgroups were compared based on a validated grading system., Results: Participants (N = 273; 74% breast cancer) averaged 54.65 years (SD = 12.08), were 3.42 years (SD = 4.20) post-diagnosis, and 33% reported cancer-related change in employment status. Financial toxicity was "mild" overall (COST M = 26.11, SD = 11.14); 32% worried about cancer-related financial problems (quite a bit/very much; item-level analysis). Worse financial toxicity related to younger age (p < 0.001), identifying as a non-Asian minority (p = 0.03) or Hispanic (p = 0.01), being single (p < 0.001), lower education (p = 0.004), lower income (p < 0.001), late-stage disease (p = 0.001), recurrent disease (p = 0.004), and active treatment (p < 0.001). In separate multivariable models, greater financial toxicity related to greater distress (β = -0.45 p < 0.001) and worse QOL (β = 0.58, p < 0.001). Financial toxicity subgroups reported clinically significant differences in distress and QOL (p's < 0.05)., Conclusions: Cancer-related financial burden is associated with pervasive negative effects and may impact subgroups differently. Future research should explore financial experiences across subgroups, aiming to better identify those at risk and build targeted interventions., (© 2021 John Wiley & Sons Ltd.)

Objective: Young breast cancer patients experience greater psychosocial distress compared with older patients, which raises concern for their risk of posttraumatic stress disorder (PTSD). We sought to characterize the prevalence of clinically significant symptoms of PTSD and associated factors among breast cancer survivors diagnosed at a young age., Methods: The Young Women's Breast Cancer Study, an ongoing prospective cohort study, enrolled 1302 women diagnosed with breast cancer at age ≤ 40 between 2006 and 2016. Participants complete serial surveys, and we obtained additional information from medical record review. Socio-demographics, anxiety and depression, social support, and psychiatric co-morbidities and medications were assessed at study baseline (median, 5 months post-diagnosis). We defined a participant as having clinically significant posttraumatic stress symptoms (PTSS) by scoring ≥50 on the PTSD Checklist-Specific Version, administered on the 30-month survey., Results: Among 700 women with stage 1-3 disease, the prevalence of PTSS was 6.3% (95%CI = 4.5-8.1). In multivariable analyses, PTSS was significantly associated with anxiety (OR 12.43, 95%CI = 5.81-26.59, P < .0001) and stage 2 vs 1 disease (OR 2.26, 95%CI = 1.04-4.93, P = .04). PTSS was inversely associated with having a college degree (OR 0.29, 95%CI = 0.13-0.62, P = .002) and greater social support (OR 0.44, 95%CI = 0.21-0.94, P = .03)., Conclusions: We found similar rates of cancer-related PTSS in breast cancer survivors diagnosed at a young age compared with the general breast cancer population despite their well-documented increased risk of overall distress. Nevertheless, factors associated with posttraumatic stress should be considered at diagnosis and in survivorship to identify young patients who may benefit from psychosocial resources., (© 2020 John Wiley & Sons, Ltd.)

Objectives: To identify and characterize distinct trajectories of change in young women's sexual functioning over the first 5 years following breast cancer diagnosis., Methods: Group-based trajectory modeling was applied to the sexual functioning of 896 women diagnosed with stage I-IV breast cancer at age 40 or younger. The Cancer Rehabilitation Evaluation System was used to evaluate women's symptoms of sexual dysfunction annually for 5 years., Results: Five distinct trajectories of sexual functioning were identified: one asymptomatic, one minimally symptomatic, two moderately symptomatic, and one severely symptomatic trajectory. Twelve percent of women were asymptomatic throughout follow-up. The plurality of women experienced stable mild symptoms (42%). Among those with moderate symptoms, some experienced improvement over time (22%) while others experienced deterioration (13%); 11% experienced stable severe symptoms that did not remit over time. Independent predictors of experiencing a symptomatic rather than asymptomatic trajectory (P < 0.05, two-sided) included diagnosis with stage 2 versus 1 disease, ER positive disease treated with oophorectomy or ovarian suppression, being partnered, having anxiety, poorer body image, and greater musculoskeletal pain., Conclusions: We identified distinct trajectories that describe the reported sexual symptoms in this cohort of young breast cancer survivors. The majority of women reported various degrees of sexual dysfunction that remained stable over the study period. There is, however, potential for improvement of moderate and severe symptoms of sexual dysfunction in early survivorship., (© 2019 John Wiley & Sons, Ltd.)

Objective: Using a large prospective cohort of women age 40 or younger diagnosed with breast cancer, we examined the relationship between perceived partner support and anxiety., Methods: Six hundred seventy-five young women with breast cancer Stages I-III, median age 36, completed a self-report baseline questionnaire. Perceived partner support was assessed using items extracted from the marital subscale of the Cancer Rehabilitation Evaluation System; generalized social support was assessed with the Medical Outcomes Study-Social Support Survey. Anxiety was measured using the anxiety subscale of the Hospital Anxiety and Depression Scale. Multivariable logistic regression analyses evaluated the association between partner support, other sociodemographic factors, and anxiety., Results: Mean age at diagnosis was 35.4 years. Fourteen percent of the women were not partnered, and among those who were partnered or in a significant relationship, 20% were categorized as unsupported. In univariate and multivariable analysis adjusting for sociodemographic factors, women in an unsupported-partnered relationship had higher odds of anxiety symptoms compared with women in a supported-partnered relationship. Young age and being financially insecure were also both independently associated with anxiety., Conclusions: Our findings suggest that partner support may play a key role in a young woman's adjustment to a serious stressor such as breast cancer. In addition, younger age increases vulnerability to anxiety as does struggling with finances. Because supportive efforts of a partner have potential to protect against the impact of stress, interventions to enhance partner support and reduce anxiety might be beneficial to address challenges experienced as a couple in this setting., (Copyright © 2015 John Wiley & Sons, Ltd.)

Objective: To assess body image concerns among young women following a breast cancer diagnosis., Methods: A total of 419 women with recently diagnosed stage 0-III breast cancer were surveyed following enrollment as part of a prospective cohort study of women age 40 or younger at diagnosis. Body image was assessed using three items from the psycho-social scale of the Cancer Rehabilitation Evaluation System (CARES). CARES scores range from 0 to 4, with higher scores indicative of greater image concerns. Mean CARES scores were calculated and compared between treatment groups using t-tests and analysis of variance. Multiple linear regression models were fit to evaluate the relationship between physical and psychological factors and body image., Results: Mean time from diagnosis to completion of the baseline survey was 5.2 months. The mean CARES score for all women was 1.28. Mean CARES scores in the mastectomy-only group (1.87) and in the mastectomy with reconstruction group (1.52) were significantly higher (p < 0.0001) compared with the scores in the lumpectomy group (0.85), indicating that radical surgery was associated with more body image concerns. Radiation (p = 0.01), anxiety (p = 0.0001), depression (p < 0.0001), fatigue (p = 0.04), musculoskeletal pain symptoms (p < 0.0001), weight gain (p = 0.01), and weight loss (p = 0.02), in addition to surgery type (p < 0.0001), were all associated with more body image concerns in the multi-variable analysis., Conclusion: This analysis highlights the impact of treatment, along with physical and psychological factors, on body image early in the survivorship period. Our findings provide targets for potential future intervention and may aid young women in the surgical decision-making process., (Copyright © 2012 John Wiley & Sons, Ltd.)

Background: The purpose of this study was to examine how young adult cancer patients make sense of their experiences with cancer., Methods: Semi-structured interviews were conducted with patients at an urban tertiary care center, Results: The sample for this study included 15 young adult cancer survivors. The ages of the participants ranged from 18 to 30 years. The sample was 67% female (n = 10) and 33% male (n = 5). The sample was 87% Caucasian (n = 13) and 13% Hispanic (n = 2). Fifty-three percent of the participants were between ages 18 and 23 years (n = 8), and 47% of the participants were between ages 24 and 30 years (n = 7). Three themes emerged from the data: intrapersonal change, interpersonal interactions, and role and identity in the hospital and the community. As they inevitably lose control in their lives, young adult patients seek to return to a familiar lifestyle that they consider as 'normal'. The formation of a revised identity and redefined set of norms allows the patients to regain control and express their individualism., Conclusions: This study contributes to our knowledge of the experiences of young adult cancer patients and survivors. The findings serve to inform young adults, caregivers, and health professionals on coping with illness and its aftermath., (Copyright © 2012 John Wiley & Sons, Ltd.)