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This study describes young adult female (YA-F) cancer survivors' uncertainty management strategies related to fertility/family building. Cross-sectional data were analyzed (n = 98). Participants reported higher rates of seeking information to reduce fertility-related uncertainty (M = 5.48, ±1.03), than avoiding information (M = 4.77, ±1.29). Controlling for relevant covariates (i.e., reproductive distress, household income, and health literacy), greater avoidance was related to higher reproductive distress (ß = 0.293, p = 0.011) and lower household income (ß = -0.281, p = 0.047). Evidence suggests that some survivors may avoid fertility-related information to manage uncertainty and distress, which may impact family-building success. Fertility avoidance may be an important target of intervention.
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Purpose: Some young adult cancer survivors (YACS; ages 18-39) struggle to incorporate their cancer experiences into their identities. Using stories, or narratives, is a new approach that could help YACS to integrate cancer and their identity. These stories offer opportunities to experience perspectives outside of oneself, which can build validation and self-compassion. However, little is known about whether stories about cancer (i.e., the threat itself) are beneficial. Method: YACS completed an online survey about their engagement with cancer storylines in entertainment media narratives (e.g., books, movies, and television shows). They also described their reactions to encountering these storylines in entertainment media. Results: Participants (n = 108) were primarily White. Participants who sought cancer storylines reported a more positive impact of cancer on their sense of purpose and identity. Among YACS who had completed treatment, cancer storylines were sought after treatment more than during treatment. In addition, compared with their peers, participants who identified as Black reported greater cancer storyline seeking both during and after treatment. Nearly half of participants (n = 45, 47.4%) described reactions to cancer-related storylines as positive or mixed, primarily owing to feelings of inspiration or validation. Conclusion: Consuming cancer storylines can offer some benefits for YACS, especially among those finished with treatment and those who identify as Black. However, not all YACS responded positively, so future research should investigate which YACS could benefit most from cancer-related storylines. Nonetheless, entertainment media narratives represent a novel approach to supporting YACS' integration of cancer into their identity.
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INTRODUCTION: Young adult cancer survivors (YACS; ages 18-39) report a significant psychological burden. Entertainment media narratives (e.g., books, movies, shows that are produced for mass consumption) might be an effective tool for reducing this distress, although little is known about present use among YACS. METHOD: YACS completed a survey about their use of entertainment media narratives to cope with cancer using an adapted version of the Brief COPE. Additionally, YACS reported their use of entertainment media narratives to start conversations about their experience with others, and they described features of entertainment media narratives that they found helpful in coping. RESULTS: We recruited 108 YACS from three recruitment sites. Most participants were White (n = 65), female (n = 54), and recruited from Prolific (n = 56), an Internet-based, crowdsourced data collection platform. Participants were, on average, 30 years old and 45 months from the completion of their primary cancer treatment. YACS who used entertainment media to cope with cancer (n = 32; 29.6%) were significantly younger and significantly closer to the end of their primary treatment. Compared to nonusers, users of entertainment media narratives to cope were also more likely to identify as Black; identifying as Black was associated with a 2.05-factor increase in using narrative entertainment media to cope with cancer even when controlling for other demographic differences. Additionally, compared to their peers, Black YACS reported greater use of narratives to start cancer-related conversations. Emotional and inspirational storylines were the most helpful story features. DISCUSSION: Some YACS, especially Black YACS, use stories to cope with their cancer experience. YACS patients could find stories useful in exploring their cancer-related emotions, although the exact benefits are still unknown.
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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.
Subject(s)
Cancer Survivors , Neoplasms , Adult , Female , Humans , Young Adult , Cancer Survivors/psychology , Decision Support Techniques , Neoplasms/therapy , Neoplasms/psychology , Pilot Projects , ReproductionABSTRACT
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 (ß = -0.20, p = 0.04), perceived consequences of cancer-related fertility changes (ß = 0.26, p = 0.03), and understanding of one's reproductive health (ß = -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.
Subject(s)
Cancer Survivors , Humans , Female , Adolescent , Cancer Survivors/psychology , Young Adult , Cross-Sectional Studies , Adult , Perception , Neoplasms/psychology , Neoplasms/complications , Infertility, Female/psychology , Infertility, Female/etiologyABSTRACT
The Stanford Cancer Survivorship Program is a key initiative of Stanford Cancer Institute. The program's mission is to improve the experience and outcomes of patients and family caregivers throughout all phases of the cancer trajectory by advancing survivorship research, clinical care, and education. The four pillars of the program include clinical care delivery with a focus on primary care-survivorship collaboration and expanding specialty services, education and training of healthcare professionals, transdisciplinary patient-oriented research, and community engagement. Cross-cutting areas of expertise include the following: (a) adolescents and young adults (AYAs), (b) mental health and patient self-management, (c) integration of primary care, and (d) postgraduate medical education. The clinical care model includes embedded survivorship clinics within disease groups in outpatient clinics, novel clinics designed to address unmet needs such as sexual health for women, and primary care-based faculty-led survivorship clinics for patients undergoing active cancer care requiring co-management, those who have completed active therapy and those at high risk for cancer due to genetic risk. Educational initiatives developed to date include an online course and medical textbook for primary care clinicians, a lecture series, monthly research team meetings, and rotations for medical trainees. Patient-facing activities include webinars and a podcast series designed to promote awareness, thus expanding the provision of expert-vetted information. Ongoing research focuses on oncofertility and family building after cancer, improving communication for AYAs, changing mindsets to improve quality of life through targeted digital interventions, increasing capacity to care for cancer survivors, and strengthening collaboration with community partners. IMPLICATIONS FOR CANCER SURVIVORS: Stanford's Cancer Survivorship Program includes a robust transdisciplinary and interdisciplinary research, training and clinical platform that is committed to advancing access and improving care for people living with and beyond cancer, through innovation in design and care delivery.
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Cancer Survivors , Neoplasms , Adolescent , Young Adult , Humans , Female , Quality of Life/psychology , Delivery of Health Care , Survivorship , Caregivers , Neoplasms/therapyABSTRACT
BACKGROUND: Individual- and population-level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non-English language preference. PROCEDURE: We partnered with a community-based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English- and Spanish-speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post-treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners. RESULTS: Twelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non-English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min-max) age 20 (16-32) and 9 (5-19) years post diagnosis; parents (nine female, two male) were age 48 (40-60) and 14 (6-23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent-AYA-clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety-net, fostering community, and facilitating H/L families' communication. CONCLUSIONS: Childhood cancer has long-lasting effects on families, and those with non-English language preference face additional burdens. Community-based support buffers some of the negative effects of childhood cancer and may reduce disparities.
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Health Inequities , Neoplasms , Adolescent , Adult , Child , Female , Humans , Male , Middle Aged , Young Adult , Family/psychology , Hispanic or Latino/psychology , Neoplasms/therapy , Parents/psychology , Qualitative Research , Vulnerable Populations , Socioeconomic Factors , Cancer SurvivorsABSTRACT
Young adult (YA) cancer survivors experience worse financial outcomes than older survivors. This analysis used data from Expect Miracles Foundation to explore the impact of one-time financial grants on financial well-being and access to health care. Among 300 respondents, the average grant was $1526 (standard deviation = $587; range $300-$3000). Respondents reported improved ability to pay expenses (t = 4.45, p < 0.001), increased financial decision-making power (t = 2.79, p = 0.06), decreased medical debt impact (t = 2.1, p = 0.04), improved transportation access (t = 2.38, p = 0.02), and fewer challenges in accessing care (t = 3.0, p = 0.005) 6 months after receiving a financial grant. Financial assistance offers YAs an opportunity to meet medical and nonmedical expenses.
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Cancer Survivors , Neoplasms , Humans , Young Adult , SurvivorsABSTRACT
Circadian, hormonal, and sleep rhythm disruptions are commonly experienced concerns among cancer patients throughout the cancer care continuum. This review aims to summarize the existing literature on circadian, hormonal, and sleep rhythms in the oncological population, focusing on circadian disruption and physiological and psychological abnormalities, disease progression, and chronomodulated treatment approaches. The findings demonstrate that subjectively and objectively measured circadian rhythm disruption is associated with adverse mental health and disease outcomes in patients with cancer. Chronomodulated chemotherapy, light therapy, cognitive behavioral therapy for insomnia, and physical activity have shown evidence of effectiveness in improving sleep, and occasionally, disease outcomes.
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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.
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Breast Neoplasms , Fertility Preservation , Neoplasms , Humans , Female , Young Adult , Adolescent , Adult , Fertility Preservation/psychology , Cross-Sectional Studies , Decision Making , Fertility , Survivors/psychology , Neoplasms/psychology , Breast Neoplasms/complicationsABSTRACT
Childhood cancer survivors are recommended to have lifelong survivorship care, yet many become disengaged during pediatric to adult care transitions. We implemented a pilot clinic for adult survivors of pediatric or adolescent and young adult (AYA) leukemia transitioning to adult-focused survivorship care. The clinic featured AYA-specific care, bidirectional communication with primary care, and a quality improvement (QI) cycle. During the 1-year QI period, 27 patients were seen and 21 completed postvisit interviews. The clinic was positively received by patients and primary care providers, showed promise for improving self-management and care coordination, and highlighted the need for novel approaches to connect survivors with primary care.
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Cancer Survivors , Neoplasms , Transition to Adult Care , Adolescent , Young Adult , Humans , Child , Neoplasms/therapy , Survivors , SurvivorshipABSTRACT
Little is known on why adherence to follow-up care in childhood cancer survivors (CCS) is lacking. This study characterized barriers to adherence to follow-up care among CCS, identified sociodemographic correlates of barriers, and examined whether barriers to follow-up care relate to health-related quality of life. Adult CCS (N=84) were anonymously surveyed via REDCap using the Barriers to Care Questionnaire (BCQ) and the Quality of Life Scale-Cancer Survivor (QOL-CS). Both descriptive and correlation analyses were conducted. The median BCQ total score was 88.5 (interquartile ranges:78.4 to 95.7), with the greatest barriers reported in the Skills (eg, ease of navigating the healthcare system) and Pragmatism subscales (eg, cost). There was a statistically significant correlation between the BCQ total score and the QOL-CS total score (rs=0.47, P <0.0001) and the physical, psychological, and social QOL-CS subscales (all P 's<0.05). The results found that barriers to follow-up care for CCS are mostly related to cost and appointment logistics, and that more barriers to care is associated with lower health-related quality of life among CCS. Identifying barriers to follow-up care is the first step in improving adherence, which would allow for earlier detection of late effects of cancer therapy and thereby result in reductions in morbidity and mortality.
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Cancer Survivors , Neoplasms , Adult , Humans , Child , Quality of Life , Aftercare , Neoplasms/therapy , Neoplasms/psychology , Surveys and QuestionnairesABSTRACT
PURPOSE: This study aims to evaluate the associations between patient-provider cost discussions with patient-reported out-of-pocket (OOP) spending and long-term financial toxicity (FT) among adolescent and young adult (AYA; 15-39 years old) cancer survivors. METHODS: Using a cross-sectional survey, we assessed the themes and quality of patient discussions with providers about financial needs and general survivorship preparation, quantified patients' levels of FT, and evaluated patient-reported OOP spending. We determined the association between cancer treatment cost discussion and FT using multivariable analysis. In a subset of survivors (n = 18), we conducted qualitative interviews and used thematic analysis to characterize responses. RESULTS: Two hundred forty-seven AYA survivors completed the survey at a mean of 7 years post treatment and with a median COST score of 13. 70% of AYA survivors did not recall having any cost discussion about their cancer treatment with a provider. Having any cost discussion with a provider was associated with decreased FT (ß = 3.00; p = 0.02) but not associated with reduced OOP spending (χ2 = 3.77; p = 0.44). In a second adjusted model, with OOP spending included as a covariate, OOP spending was a significant predictor of FT (ß = - 1.40; p = 0.002). Key qualitative themes included survivors' frustration about the lack of communication related to financial issues throughout treatment and in survivorship, feeling unprepared, and reluctance to seek help. CONCLUSION: AYA patients are not fully informed about the costs of cancer care and FT; the dearth of cost discussions between patients and providers may represent a missed opportunity to reduce costs.
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Cancer Survivors , Cost Sharing , Cost of Illness , Financial Stress , Financial Stress/prevention & control , Financial Stress/psychology , Humans , Adolescent , Young Adult , Adult , Cancer Survivors/psychology , Time , Cross-Sectional Studies , Male , Female , Surveys and QuestionnairesABSTRACT
Purpose: Social media can facilitate peer support among young adults with cancer; however, information is needed about what social media are used, by whom, and how to inform resource and intervention recommendations. Methods: In December 2021, we conducted an online survey with 396 young adults with cancer, ages 18-39, with any diagnosis ages 15-39. Participants reported their social media use to connect with other young adults with cancer, including frequency of use, type of support, and affect (positive to negative) when using to connect with cancer peers. Results: Participants were on average 31 years old (SD = 5.2), with an average age of 27 at diagnosis (63.4% male, 62.1% non-Hispanic White). Almost all (97.5%) reported using social media to connect with other young adults with cancer. Many (48.0%) used three or more social media platforms for cancer support, including Facebook (44.4%), YouTube (43.6%), Instagram (43.4%), Snapchat (36.9%), and Twitter (36.9%). Daily use for cancer support was common (32.9%-60.9%) among those who used social media, particularly among those who were younger; are not transgender; live in urban areas; or had brain, gynecologic, or testicular cancers. Across social media platforms, young adults with cancer reported seeking and sharing emotional support (88.9%), informational support (84.1%), and making connections (81.3%). Conclusion: Young adults with cancer use social media to connect with cancer peers for support. Commonly used existing social media (e.g., Facebook, YouTube, Instagram) should be prioritized in interventions to reach young adults who desire more age-appropriate resources to improve their psychosocial health.
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BACKGROUND: Cancer-related financial hardship can negatively impact financial well-being and may prevent adolescent and young adult (AYA) cancer survivors (ages 15-39) from gaining financial independence. This analysis explored the financial experiences following diagnosis with cancer among AYA survivors. METHODS: We conducted a cross-sectional, anonymous survey of a national sample of AYAs recruited online. The Comprehensive Score for Financial Toxicity (COST) and InCharge Financial Distress/Financial Well-Being Scale (IFDFW) assessed financial hardship (cancer-related and general, respectively), and respondents reported related financial consequences and financial coping behaviors (both medical and non-medical). RESULTS: Two hundred sixty-seven AYA survivors completed the survey (mean 8.3 years from diagnosis). Financial hardship was high: mean COST score was 13.7 (moderate-to-severe financial toxicity); mean IFDFW score was 4.3 (high financial stress). Financial consequences included post-cancer credit score decrease (44%), debt collection contact (39%), spending more than 10% of income on medical expenses (39%), and lacking money for basic necessities (23%). Financial coping behaviors included taking money from savings (55%), taking on credit card debt (45%), putting off major purchases (45%), and borrowing money (42%). In logistic regression models, general financial distress was associated with increased odds of experiencing financial consequences and engaging in both medical- and non-medical-related financial coping behaviors. DISCUSSION: AYA survivors face long-term financial hardship after cancer treatment, which impacts multiple domains, including their use of healthcare and their personal finances. Interventions are needed to provide AYAs with tools to navigate financial aspects of the healthcare system; connect them with resources; and create systems-level solutions to address healthcare affordability. IMPLICATIONS FOR CANCER SURVIVORS: Survivorship care providers, particularly those who interact with AYA survivors, must be attuned to the unique risk for financial hardships facing this population and make efforts to increase access available interventions.
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Cancer Survivors , Neoplasms , Humans , Young Adult , Adolescent , Cross-Sectional Studies , Survivors , Neoplasms/therapy , IncomeABSTRACT
Purpose: Adolescent and young adult (AYA) survivors are at-risk for cancer-related financial difficulties (i.e., financial toxicity [FT]). Family building after cancer often requires reproductive medicine or adoption with high costs; AYAs experience financial barriers to family building. This study evaluated the relationships among cancer FT, reproductive concerns, and decision-making processes about family building after cancer. Methods: AYA female (AYA-F) cancer survivors completed a cross-sectional survey including measures of FT, reproductive concerns, decisional conflict about family building, and decision-making self-efficacy. Differences across FT subgroups (i.e., no/mild, moderate, and severe FT) were tested. Linear regression evaluated the relationships between FT and reproductive concerns and decision-making processes. Results: Participants (N = 111) averaged 31.0 years (standard deviation [SD] = 5.49), 90% were nulliparous, and 84% were employed full/part-time. The overall FT levels were in the "moderate" range (M = 20.44, SD = 9.83); 48% worried quite a bit or very much about financial problems because of cancer. AYA-Fs reporting severe FT (24% of sample) experienced higher levels of reproductive concerns compared with those reporting no/mild and moderate FT. Those reporting moderate FT (46% of sample) reported greater decisional conflict about family-building options, compared with the no/mild FT subgroup. Both moderate and severe FT subgroups reported lower decision-making self-efficacy compared with the no/mild FT subgroup. In separate models controlling for covariates, greater FT related to higher levels of reproductive concerns (B = -0.39, p < 0.001), greater decisional conflict about family building (B = -0.56, p = 0.02), and lower decision-making self-efficacy (B = 0.60, p = 0.01). Conclusions: Given the high costs of reproductive medicine and adoption, fertility counseling pre- and post-treatment must address survivors' financial concerns and barriers.
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Neoplasms , Survivorship , Young Adult , Adolescent , Humans , Female , Financial Stress , Cross-Sectional Studies , Reproduction , Counseling , Neoplasms/psychologyABSTRACT
OBJECTIVES: This study evaluated breast and gynecologic cancer patients' sexual function, unmet needs related to sexuality, and distress. DATA SOURCES: Secondary analyses of a cross-sectional survey study evaluated measures of sexual function (Female Sexual Function Index [FSFI]), unmet needs (Supportive Care Needs Scale), and distress (Patient Health Questionnaire). χ2 test, t tests, and analysis of variances (ANOVAs) tested bivariate relationships. Subgroup comparisons were made based on the Female Sexual Function Index sexual dysfunction diagnostic cut-off score (<26.55; lower scores indicate greater dysfunction). A regression model tested associations between sexual function and unmet needs with distress as the outcome variable. CONCLUSION: Clinically significant sexual dysfunction was common in this cohort of women. In multivariate modeling, worse sexual function and greater unmet sexuality needs related to greater distress. Future work should explore reasons behind the high levels of sexual dysfunction and unmet needs in female survivors. IMPLICATIONS FOR NURSING PRACTICE: It is important to routinely screen for sexual health concerns among female cancer survivors at all phases of the cancer trajectory including years posttreatment.
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Cancer Survivors , Genital Neoplasms, Female , Sexual Dysfunction, Physiological , Sexual Health , Female , Humans , Cross-Sectional Studies , Quality of Life , Survivors , Sexual Dysfunction, Physiological/epidemiology , Sexual Dysfunction, Physiological/etiology , Genital Neoplasms, Female/complications , Genital Neoplasms, Female/therapyABSTRACT
BACKGROUND: Owing 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. OBJECTIVE: As 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. METHODS: In 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. RESULTS: Participants (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. CONCLUSIONS: Website 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.
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OBJECTIVE: This study aimed to examine the association between mindsets-established, but mutable beliefs that a person holds-and health-related quality of life in survivors of breast and gynecologic cancer. METHOD: A cross-sectional survey study was conducted with breast and gynecologic cancer survivors. Measures included the Illness Mindset Questionnaire and Functional Assessment of Cancer Therapy-General (FACT-G). RESULTS: Two hundred seventy-three survivors (74% breast/26% gynecologic) who were on average 3.9 years post-diagnosis (SD = 4.2), Mage 55 (SD = 12) completed the survey (response rate 80%). Of the survivors, 20.1% (N = 55) endorsed ("agree" or "strongly agree") that Cancer is a Catastrophe, 52.4% (N = 143) endorsed that Cancer is Manageable, and 65.9% (N = 180) endorsed that Cancer can be an Opportunity (not mutually exclusive). Those who endorsed a maladaptive mindset (Cancer is a Catastrophe) reported lower health-related quality of life (HRQOL) compared with those who did not hold this belief (p < .001). Alternatively, those who endorsed more adaptive mindsets (Cancer is Manageable or Cancer can be an Opportunity) reported better HRQOL compared with those who disagreed (all p-values < .05). All three mindsets were independent correlates of HRQOL, explaining 6-15% unique variance in HRQOL, even after accounting for demographic and medical factors. CONCLUSIONS: Mindsets about illness are significantly associated with HRQOL in cancer survivors. Our data come from a one-time evaluation of cancer survivors at a single clinic and provide a foundation for future longitudinal studies and RCTs on the relationship between mindsets and psychosocial outcomes in cancer survivors. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
Subject(s)
Cancer Survivors , Neoplasms , Cancer Survivors/psychology , Cross-Sectional Studies , Female , Humans , Quality of Life , Surveys and Questionnaires , SurvivorsABSTRACT
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 (ß = -0.45 p < 0.001) and worse QOL (ß = 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.