Catherine Benedict

All Publications

• Cancer Survivorship at Stanford Cancer Institute. Journal of cancer survivorship : research and practice Smith, S. M., Steele, N., Kim, J., Yurkiewicz, I. R., Benedict, C., Trivedi, R., Heathcote, L. C., Simon, P. J., Bugos, K., Clayton, A., Palesh, O., Schapira, L. 2024

  Abstract

  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.

  View details for DOI 10.1007/s11764-023-01523-w

  View details for PubMedID 38183579

  View details for PubMedCentralID 9545782

• The long-term financial experiences of adolescent and young adult cancer survivors. Journal of cancer survivorship : research and practice Thom, B., Friedman, D. N., Aviki, E. M., Benedict, C., Watson, S. E., Zeitler, M. S., Chino, F. 2022

  Abstract

  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 8.3years 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.

  View details for DOI 10.1007/s11764-022-01280-2

  View details for PubMedID 36472761

• Current Considerations in Interventions to Address Sexual Function and Improve Care for Women with Cancer CURRENT SEXUAL HEALTH REPORTS Benedict, C., Shaffer, K. M., Wirtz, M. R., Ford, J. S., Reese, J. 2022

  View details for DOI 10.1007/s11930-022-00343-w

  View details for Web of Science ID 000869606400001

• Examining Associations Among Sexual Health, Unmet Care Needs, and Distress in Breast and Gynecologic Cancer Survivors. Seminars in oncology nursing Benedict, C., Fisher, S., Kumar, D., Pollom, E., Schapira, L., Kurian, A. W., Berek, J. S., Palesh, O. 2022: 151316

  Abstract

  This study evaluated breast and gynecologic cancer patients' sexual function, unmet needs related to sexuality, and distress.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.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.It is important to routinely screen for sexual health concerns among female cancer survivors at all phases of the cancer trajectory including years posttreatment.

  View details for DOI 10.1016/j.soncn.2022.151316

  View details for PubMedID 35902337

• Greater fertility distress and avoidance relate to lower decision self-efficacy about family-building after cancer among adolescent and young adult female survivors Benedict, C., Diefenbach, M., Ford, J. WILEY. 2021: 55

  View details for Web of Science ID 000624698300120

• "Looking at future cancer survivors, give them a roadmap": addressing fertility and family-building topics in post-treatment cancer survivorship care. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Benedict, C., Nieh, J., Hahn, A. L., McCready, A., Diefenbach, M., Ford, J. S. 2020

  Abstract

  PURPOSE: 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.METHODS: 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.RESULTS: 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.CONCLUSION: 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.

  View details for DOI 10.1007/s00520-020-05731-3

  View details for PubMedID 32889581

• The Impact of Financial Toxicity on Psychological Well-Being, Coping Self-Efficacy, and Cost-Coping Behaviors in Young Adults with Cancer. Journal of adolescent and young adult oncology Thom, B., Benedict, C. 2019

  Abstract

  PURPOSE: The increase in cost-sharing between patients and payers has resulted in financial toxicity in cancer patients, particularly among young adult (YA) patients and survivors (<40 years of age). This study explored financial toxicity and its impact on psychological well-being, self-efficacy for coping with cancer, and cost-coping behaviors among a sample of YA cancer patients and survivors.METHODS: One hundred forty YAs completed an anonymous online survey. The Comprehensive Score for Financial Toxicity measured financial toxicity and the Cancer Behavior Inventory-Brief measured coping self-efficacy. The Patient Health Questionnaire-4 and items from the Impact of Cancer-Young Adult and the Cancer Needs Questionnaire-Young People assessed psychological well-being. A single item assessed cost-coping behaviors (i.e., skipping or delaying treatment because of its cost). Analyses included Pearson and Spearman correlation matrices and multivariate regression modeling.RESULTS: Worse financial toxicity was associated with lower insurance satisfaction (r=0.52, p<0.001), higher levels of depressive and anxiety symptoms (r=-0.42, p<0.001), greater worry (p<0.001), and lower self-efficacy in coping with cancer (i.e., maintaining independence and a positive attitude, r=0.41, p<0.001; coping and stress management, r=0.43, p<0.001; and managing negative effect, r=0.20, p=0.02). In multivariate modeling, financial toxicity related to skipping or delaying treatment and greater anxiety and depression symptomology, controlling for relevant covariates.CONCLUSION: The findings suggest financial toxicity negatively impacts many facets of the YA cancer experience. There is a need to address the cost of cancer care with patients to ensure they are informed about the financial implications of treatment decisions and to support financial planning as needed.

  View details for PubMedID 30817217

• Family-building decision aid and planning tool for young adult women after cancer treatment: protocol for preliminary testing of a web-based decision support intervention in a single-arm pilot study. BMJ open Benedict, C. n., Ford, J. S., Schapira, L. n., Simon, P. n., Spiegel, D. n., Diefenbach, M. n. 2019; 9 (12): e033630

  Abstract

  Many young adult female (YA-F) cancer survivors who received gonadotoxic therapy will experience fertility problems. After cancer, having a child will often require assisted reproductive technology (ART), surrogacy or adoption. However, there are significant informational, psychosocial, financial and logistical barriers to pursuing these options. Survivors report high rates of decision uncertainty and distress related to family-building decisions. The aim of this study is to pilot test a web-based decision aid and planning tool for family-building after cancer.The pilot study will use a single-arm trial design to test the feasibility and acceptability (aim 1) and obtain effect size estimates of the decision support intervention (aim 2). The target sample size is 100. Participants will include YA-F survivors (aged 18-45 years) who are post-treatment and have not completed desired family-building. A longitudinal prepost design will be conducted. Participants will complete three psychosocial assessment surveys over a 3-month time period to track decisional conflict (primary outcome) and cognitive, emotional, and behavioural functioning (secondary outcomes). After completing the baseline survey (T1; pre-intervention), participants will have access to the decision aid website. Postintervention surveys will be administered at 1-month (T2) and 3-month (T3) follow-up time points. Feasibility and acceptability metrics will be analysed. Pairwise t-tests will test mean scores of outcome variables from T1 to T2. Effect size estimates (Cohen's d) will be calculated. Google analytics will evaluate user engagement with the website over the study period. Baseline and follow-up data will examine measures of feasibility, acceptability and intervention effect size.This will be the first test of a supportive intervention to guide YA-F cancer survivors in family-building decisions and early planning. Study findings will inform intervention development. Future directions will include a randomised controlled trial to test intervention efficacy over a longer time period.NCT04059237; Pre-results.

  View details for DOI 10.1136/bmjopen-2019-033630

  View details for PubMedID 31888941

• Preliminary testing of "roadmap to parenthood" decision aid and planning tool for family building after cancer: Results of a single-arm pilot study. Psycho-oncology Benedict, C., Ford, J. S., Schapira, L., Davis, A., Simon, P., Spiegel, D., Diefenbach, M. 2024; 33 (4): e6323

  Abstract

  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 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.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.

  View details for DOI 10.1002/pon.6323

  View details for PubMedID 38629761

• Perceptions of Infertility and Reproductive Concerns in Adolescent and Young Adult Female Cancer Survivors. Journal of adolescent and young adult oncology Zeidman, A., Davis, A. M., Ford, J. S., Diefenbach, M., Benedict, C. 2024

  Abstract

  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.

  View details for DOI 10.1089/jayao.2023.0138

  View details for PubMedID 38451722

• A qualitative study of childhood cancer families' post-treatment needs and the impact of a community-based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region. Pediatric blood & cancer Smith, S. M., Teer, A., Tolamatl Ariceaga, E., Billman, E., Benedict, C., Goyal, A., Pang, E. M., Pecos-Duarte, C., Lewinsohn, R., Smith, M., Boynton, H., Montes, S., Rivera, E., Ramirez, D., Schapira, L. 2023: e30798

  Abstract

  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.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.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.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.

  View details for DOI 10.1002/pbc.30798

  View details for PubMedID 38053230

• Using Real-World Data to Explore the Impact of One-Time Financial Grants Among Young Adult Cancer Survivors. Journal of adolescent and young adult oncology Thom, B., Arora, N., Benedict, C., Aviki, E. M., Chino, F., Friedman, D. N., Watson, S. E., Zeitler, M. S. 2023

  Abstract

  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.

  View details for DOI 10.1089/jayao.2022.0188

  View details for PubMedID 37852000

• DEVELOPMENT AND PILOT TESTING OF ROADMAP TO PARENTHOOD, A DECISION AID AND PLANNING TOOL FOR FAMILY BUILDING AFTER CANCER Benedict, C., Ford, J., Diefenbach, M. SPRINGER. 2023: S12

  View details for Web of Science ID 001058769400033

• Greater fertility distress and avoidance relate to poorer decision making about family building after cancer among adolescent and young adult female survivors. Psycho-oncology Benedict, C., Stal, J., Davis, A., Zeidman, A., Pons, D., Schapira, L., Diefenbach, M., Ford, J. S. 2023

  Abstract

  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 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.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.

  View details for DOI 10.1002/pon.6212

  View details for PubMedID 37695291

• Circadian, hormonal, and sleep rhythms: effects on cancer progression implications for treatment. Frontiers in oncology Jagielo, A. D., Benedict, C., Spiegel, D. 2023; 13: 1269378

  Abstract

  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.

  View details for DOI 10.3389/fonc.2023.1269378

  View details for PubMedID 37746277

  View details for PubMedCentralID PMC10514358

• Implementation of a Pilot Clinic for Pediatric to Adult Cancer Survivorship Transitions. Journal of adolescent and young adult oncology Jin, A. H., Simon, P. J., Clayton, A., Benedict, C., Liedtke, M., Muffly, L., Schapira, L., Smith, S. M. 2023

  Abstract

  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.

  View details for DOI 10.1089/jayao.2023.0041

  View details for PubMedID 37615593

• Barriers to Receiving Follow-up Care Among Childhood Cancer Survivors. Journal of pediatric hematology/oncology Bossert, S., Borenzweig, W., Benedict, C., Cerise, J. E., Siembida, E. J., Fish, J. D. 2023

  Abstract

  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.

  View details for DOI 10.1097/MPH.0000000000002714

  View details for PubMedID 37526350

• Do discussions of financial burdens decrease long-term financial toxicity in adolescent and young adult cancer survivors? Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Wu, V. S., Benedict, C., Friedman, D. N., Watson, S. E., Anglade, E., Zeitler, M. S., Chino, F., Thom, B. 2023; 31 (7): 434

  Abstract

  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; 15-39years 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 7years 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 (beta=3.00; p=0.02) but not associated with reduced OOP spending (chi2=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 (beta=-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.

  View details for DOI 10.1007/s00520-023-07822-3

  View details for PubMedID 37395811

• Leveraging a community-academic partnership to evaluate the needs of Latinx AYA cancer survivors Smith, S. M., Teer, A., Ariceaga, E., Billman, E., Goyal, A., Benedict, C., Pecos-Duarte, C., Smith, M., Montes, S., Luna, E., Ramirez, D., Boynton, H., Schapira, L. LIPPINCOTT WILLIAMS & WILKINS. 2023

  View details for Web of Science ID 001053772002624

• Social Media Use for Cancer Support Among Young Adults with Cancer. Journal of adolescent and young adult oncology Lazard, A. J., Meernik, C., Collins, M. K., Vereen, R. N., Benedict, C., Valle, C. G., Love, B. 2023

  Abstract

  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.

  View details for DOI 10.1089/jayao.2023.0025

  View details for PubMedID 37257189

• POSTER SESSION D: PILOT STUDY OF 'ROADMAP TO PARENTHOOD' DECISION AID AND PLANNING TOOL FOR FAMILY BUILDING AFTER CANCER Benedict, C., Simon, P., Spiegel, D., Kurian, A. W., Alvero, R., Berek, J. S., Philip, E. J., Schapira, L. OXFORD UNIV PRESS INC. 2023: S533

  View details for Web of Science ID 001042977901464

• Understanding unmet needs of adult survivors of childhood cancer in California's Salinas Valley: A community-academic partnership to develop programs for families after cancer treatment Smith, S. M., Pecos-Duarte, C., Ariceaga, E., Billman, E., Teer, A., Benedict, C., Smith, M., Montes, S., Rivera, E., Ramirez, D., Boynton, H., Schapira, L. AMER ASSOC CANCER RESEARCH. 2023: 144-145

  View details for Web of Science ID 000916472900194

• Change in practice of RRSO consults and procedures during the COVID-19 pandemic O'Mara, A., Kurian, A., Benedict, C., Diver, E. ACADEMIC PRESS INC ELSEVIER SCIENCE. 2022: S275

  View details for Web of Science ID 000892333600112

• The Impact of Cancer-Related Financial Toxicity on Reproductive Concerns and Family-Building Decision-Making in Post-Treatment Survivorship. Journal of adolescent and young adult oncology Benedict, C., Thom, B., Diefenbach, M., Schapira, L., Simon, P., Ford, J. S. 2022

  Abstract

  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.

  View details for DOI 10.1089/jayao.2022.0088

  View details for PubMedID 36169520

• Association of illness mindsets with health-related quality of life in cancer survivors. Health psychology : official journal of the Division of Health Psychology, American Psychological Association Zeidman, A., Benedict, C., Zion, S. R., Fisher, S., Tolby, L., Kurian, A. W., Berek, J. S., Woldeamanuel, Y. W., Schapira, L., Palesh, O. 2022; 41 (6): 389-395

  Abstract

  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.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).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.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).

  View details for DOI 10.1037/hea0001186

  View details for PubMedID 35604702

• Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing. JMIR cancer Benedict, C., Dauber-Decker, K. L., Ford, J. S., King, D., Spiegel, D., Schapira, L., Simon, P., Diefenbach, M. 2022; 8 (2): e33304

  Abstract

  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.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.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.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.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.

  View details for DOI 10.2196/33304

  View details for PubMedID 35639461

• CANCER FINANCIAL TOXICITY IMPACTS FERTILITY EXPERIENCES AND FAMILY BUILDING DECISION MAKING IN POST-TREATMENT SURVIVORSHIP Benedict, C., Thom, B., Diefenbach, M. A., Ford, J. S. OXFORD UNIV PRESS INC. 2022: S61

  View details for Web of Science ID 000788118600132

• HEALTH COST LITERACY AND FINANCIAL HARDSHIP AMONG ADOLESCENT AND YOUNG ADULT CANCER SURVIVORS Thom, B., Benedict, C., Aviki, E., Friedman, D., Watson, S., Zeitler, M., Chino, F. OXFORD UNIV PRESS INC. 2022: S365

  View details for Web of Science ID 000788118601145

• THE DEVELOPMENT OF MULTIPLE TYPES OF DECISION AIDS FOR CANCER PATIENTS AND PROVIDERS Diefenbach, M. A., Richardson, S., Benedict, C., Miller, S. M., Hall, S., Vira, M., Tagai, E. K., Kutikov, A., Correa, A. F., Ford, J. S., Dauber-Decker, K. L., Solomon, J., Barnaby, D. OXFORD UNIV PRESS INC. 2022: S601

  View details for Web of Science ID 000788118602005

• Oncofertility Decision Making in Breast Cancer Patients Thom, B., Benedict, C., Abdo, N., Casson, A., Chang, C., Gemignani, M. L., Hershberger, P., Kelvin, J. F., Martino, L., Semler, R., Goldfarb, S. B. WILEY. 2022: 66

  View details for Web of Science ID 000765384800150

• Using Social Media for Peer-to-Peer Cancer Support: Interviews With Young Adults With Cancer. JMIR cancer Lazard, A. J., Collins, M. K., Hedrick, A., Varma, T., Love, B., Valle, C. G., Brooks, E., Benedict, C. 2021; 7 (3): e28234

  Abstract

  BACKGROUND: Web-based social support can address social isolation and unmet support needs among young adults with cancer (aged 18-39 years). Given that 94% of young adults own and use smartphones, social media can offer personalized, accessible social support among peers with cancer.OBJECTIVE: This study aims to examine the specific benefits, downsides, and topics of social support via social media among young adults with cancer.METHODS: We conducted semistructured interviews with young adults with cancer, aged between 18 and 39 years, who were receiving treatment or had completed treatment for cancer.RESULTS: Most participants (N=45) used general audience platforms (eg, Facebook groups), and some cancer-specific social media (eg, Caring Bridge), to discuss relevant lived experiences for medical information (managing side effects and treatment uncertainty) and navigating life with cancer (parenting and financial issues). Participants valued socializing with other young adults with cancer, making connections outside their personal networks, and being able to validate their emotional and mental health experiences without time and physical constraints. However, using social media for peer support can be an emotional burden, especially when others post disheartening or harassing content, and can heighten privacy concerns, especially when navigating cancer-related stigma.CONCLUSIONS: Social media allows young adults to connect with peers to share and feel validated about their treatment and life concerns. However, barriers exist for receiving support from social media; these could be reduced through content moderation and developing more customizable, potentially cancer-specific social media apps and platforms to enhance one's ability to find peers and manage groups.

  View details for DOI 10.2196/28234

  View details for PubMedID 34473063

• Headache outcomes of a sleep behavioral intervention in breast cancer survivors: Secondary analysis of a randomized clinical trial. Cancer Woldeamanuel, Y. W., Blayney, D. W., Jo, B., Fisher, S. E., Benedict, C., Oakley-Girvan, I., Kesler, S. R., Palesh, O. 2021

  Abstract

  BACKGROUND: Breast cancer survivors often have persisting headache. In a secondary analysis of the Brief Behavioral Therapy for Cancer-Related Insomnia (BBT-CI) clinical trial (ClinicalTrials.gov identifier NCT02165839), the authors examined the effects of BBT-CI on headache outcomes in patients with breast cancer.METHODS: Patients with breast cancer who were receiving chemotherapy were randomly assigned to receive either the BBT-CI intervention or the Healthy EAting Education Learning for healthy sleep (HEAL) control intervention, and both were delivered over 6 weeks by trained staff. Headache outcomes and heart rate variability (HRV) were measured at baseline, 6 weeks, 6 months, and 12 months. Mixed-effects models were used to examine longitudinal headache outcomes in the groups according to the intention to treat. Principal component analysis and agglomerative hierarchical clustering were conducted to reduce 16 variables for data-driven phenotyping.RESULTS: Patients in the BBT-CI arm (n = 73) exhibited a significant reduction in headache burden over time (P = .02; effect size [Cohen d] = 0.43), whereas the reduction was not significant among those in the HEAL arm (n = 66). The first principal component was positively loaded by headache, sleep, fatigue, and nausea/vomiting and was negatively loaded by cognitive, physical, and emotional functioning. Agglomerative hierarchical clustering revealed 3 natural clusters. Cluster I (n = 58) featured the highest burden of headache, insomnia, and nausea/vomiting; cluster II (n = 50) featured the lowest HRV despite a low burden of headache and insomnia; and cluster III (n = 31) showed an inverse relation between HRV and headache-insomnia, signifying autonomic dysfunction.CONCLUSIONS: BBT-CI is efficacious in reducing headache burden in breast cancer survivors. Patient phenotyping demonstrates a headache type featuring sleep disturbance, nausea/vomiting, and low physical functioning-revealing similarities to migraine.LAY SUMMARY: Breast cancer survivors often have persisting headache symptoms. In patients with cancer, treatment of chronic headache disorders using daily medications may be challenging because of drug interactions with chemotherapy and other cancer therapies as well as patients' reluctance to add more drugs to their medicine list. Headache and sleep disorders are closely related to each other. This study demonstrates that a sleep behavioral therapy reduced headache burden in breast cancer survivors. In addition, the majority of headache sufferers had a headache type with similarities to migraine-featuring sleep disturbance, nausea/vomiting, and low physical functioning.

  View details for DOI 10.1002/cncr.33844

  View details for PubMedID 34357593

• Economic distress, financial toxicity, and medical cost-coping in young adult cancer survivors during the COVID-19 pandemic: Findings from an online sample. Cancer Thom, B., Benedict, C., Friedman, D. N., Watson, S. E., Zeitler, M. S., Chino, F. 2021

  Abstract

  BACKGROUND: Young adult (YA) cancer survivors are at risk for financial toxicity during and after cancer treatment. Financial toxicity has been associated with medical-related cost-coping behaviors such as skipping or delaying treatment. The coronavirus disease 2019 (COVID-19) pandemic has resulted in dire economic consequences that may worsen financial hardship among young survivors.METHODS: This was a cross-sectional survey; data collection occurred online. A convenience sample was recruited through YA cancer advocacy groups and social media. Negative economic events associated with the COVID-19 pandemic (eg, income loss, increased debt, and decreased job security) and medical-related cost-coping were documented. A validated measure assessed cancer-related financial toxicity.RESULTS: Participants (N = 212) had a mean age of 35.3 years at survey completion and a mean age of 27.4 years at diagnosis. Financial toxicity (mean, 14.0; SD, 9.33) was high. Two-thirds of the sample experienced at least 1 negative economic event during COVID-19, and 71% engaged in at least 1 medical cost-coping behavior. Cost-coping and pandemic-related negative economic events were significantly correlated with cancer-related financial toxicity. In multivariable analyses, pandemic-related negative economic events and financial toxicity were associated with cost-coping.CONCLUSIONS: Acute negative economic events associated with the COVID-19 pandemic may exacerbate cancer-related financial toxicity and overall financial hardship among YAs and lead to cost-coping behaviors that can compromise survivorship care and health outcomes. Multilevel, systematic interventions are needed to address the financial needs of YA survivors after the global pandemic.

  View details for DOI 10.1002/cncr.33823

  View details for PubMedID 34351638

• Psychosocial impacts of the COVID-19 pandemic on young adult cancer survivors and parents of children with cancer. Smith, S. M., Kumar, D., Benedict, C., Heathcote, L. C., Aftandilian, C., Bondy, M., Schapira, L. LIPPINCOTT WILLIAMS & WILKINS. 2021

  View details for DOI 10.1200/JCO.2021.39.15_suppl.10050

  View details for Web of Science ID 000708120605237

• Implementation of a clinic to facilitate the transition from pediatric to adult cancer survivorship care. Smith, S. M., Jin, A., Simon, P., Clayton, A., Benedict, C., Liedtke, M., Muffly, L. S., Schapira, L. LIPPINCOTT WILLIAMS & WILKINS. 2021

  View details for DOI 10.1200/JCO.2021.39.15_suppl.e13519

  View details for Web of Science ID 000708120300199

• The enduring negative effects of financial toxicity in young adult cancer survivors. Thom, B., Benedict, C., Friedman, D., Watson, S., Zeitler, M., Chino, F. LIPPINCOTT WILLIAMS & WILKINS. 2021

  View details for DOI 10.1200/JCO.2021.39.15_suppl.12117

  View details for Web of Science ID 000708120606226

• EFFICACY OF BRIEF BEHAVIORAL THERAPY FOR HEADACHE MANAGEMENT IN BREAST CANCER PATIENTS RECEIVING CHEMOTHERAPY Woldeamanuel, Y., Blayney, D. W., Jo, B., Fisher, S., Benedict, C., Kesler, S., Oakley-Girvan, I., Palesh, O. OXFORD UNIV PRESS INC. 2021: S182

  View details for Web of Science ID 000648922700370

• GOING ALL IN ON INTIMACY: UNDERSTANDING AND IMPROVING SEXUAL WELL-BEING FOR WOMEN AFTER CANCER Benedict, C., Shaffer, K. M., Gorman, J. R., Reese, J. B., Bober, S. L. OXFORD UNIV PRESS INC. 2021: S604

  View details for Web of Science ID 000648922701432

• ADDRESSING FINANCIAL TOXICITY IN YOUNG ADULT CANCER: EXPLORING THE IMPACT OF ONE-TIME FINANCIAL GRANTS Thom, B., Benedict, C., Landwehr, M., Watson, S. OXFORD UNIV PRESS INC. 2021: S36

  View details for Web of Science ID 000648922700073

• THE CHALLENGES OF CONDUCTING CLINICAL RESEARCH IN THE TIMES OF COVID-19 Marziliano, A., Sookchan, A., Mistretta, T., Pfister, H., Benedict, C., Tagai, E. K., Miller, S. M., Diefenbach, M. A. OXFORD UNIV PRESS INC. 2021: S448

  View details for Web of Science ID 000648922701101

• THE DEVELOPMENT OF WEB-BASED TOOLS AND MOBILE APPS TO PROVIDE INFORMATION AND DECISION SUPPORT FOR CANCER PATIENTS AND SURVIVORS Marziliano, A., Benedict, C., Siembida, E. J., Teckie, S., Solomon, J., Miller, S. M., Diefenbach, M. A. OXFORD UNIV PRESS INC. 2021: S532

  View details for Web of Science ID 000648922701269

• ILLNESS MINDSETS, DEMOGRAPHIC AND MEDICAL FACTORS, AND HEALTH-RELATED QUALITY OF LIFE IN BREAST & GYNECOLOGIC CANCER SURVIVORS Zeidman, A., Benedict, C., Tolby, L., Zion, S., Fisher, S., Kurian, A. W., Berek, J. S., Woldeamanuel, Y., Schapira, L., Palesh, O. OXFORD UNIV PRESS INC. 2021: S266

  View details for Web of Science ID 000648922700539

• EXAMINING ASSOCIATIONS AMONG SEXUAL HEALTH, UNMET CARE NEEDS RELATED TO SEXUALITY, AND DISTRESS IN BREAST AND GYNECOLOGIC CANCER SURVIVORS Benedict, C., Fisher, S., Kuma, D., Pollom, E., Schapira, L., Kurian, A., Berek, J. S., Palesh, O. OXFORD UNIV PRESS INC. 2021: S605

  View details for Web of Science ID 000648922701433

• Psychological Symptoms and Patterns of Mobile Application Use for Young Adult Cancer Survivors. Psycho-oncology Ahmad, Z. N., Benedict, C., Hotchkiss, M., Ford, J. S. 2021

  View details for DOI 10.1002/pon.5662

  View details for PubMedID 33646607

• Initiation and changes in use of social media for peer support among young adults with cancer Lazard, A. J., Collins, M., Hedrick, A., Horrell, L. N., Varma, T., Valle, C. G., Love, B., Benedict, C. WILEY. 2021: 60–61

  View details for Web of Science ID 000624698300132

• Using social media for support among young adults with cancer Lazard, A. J., Collins, M., Hedrick, A., Varma, T., Love, B., Valle, C. G., Brooks, E., Benedict, C. WILEY. 2021: 86–87

  View details for Web of Science ID 000624698300186

• A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype. JMIR formative research Benedict, C., Dauber-Decker, K. L., King, D., Hahn, A., Ford, J. S., Diefenbach, M. 2021; 5 (1): e20841

  Abstract

  BACKGROUND: An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients' needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users' needs, values, abilities, and limitations.OBJECTIVE: This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building.METHODS: User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed.RESULTS: The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process.CONCLUSIONS: The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement.

  View details for DOI 10.2196/20841

  View details for PubMedID 33480848

• Initiation and changes in use of social media for peer support among young adult cancer patients and survivors. Psycho-oncology Lazard, A. J., Collins, M. K., Hedrick, A., Horrell, L. N., Varma, T., Love, B., Valle, C. G., Benedict, C. 2021

  Abstract

  Social isolation is a prominent challenge for many young adults with cancer. Despite desires for peer-to-peer connections through technology, little is known about how young adults initiate or use social media for support over time.We interviewed young adults with cancer (n = 45; age 18-39, in or post cancer treatment) to explore their initiation of social media for support, changes in use over time, and types of connections sought.Young adults with cancer learn about online support through individual personal recommendations, advocacy organizations, or searching on Google or social media. Most were reluctant to use social media support initially because of feeling overwhelmed-from diagnoses, abundance of online information, or demands of participation-and joined when informational and emotional needs arose. Many wished they had joined earlier. Some participants use social media to make close connections while others simply want to "see" others' shared experiences or crowdsource information.Young adults with cancer often haphazardly find online support from personal recommendations or Internet searches. Desires for social media connections are not one-size-fits-all; there are important audience segmentations for the degree and type of peer support.Better promotion of online social support options and benefits-early in one's cancer timeline and systematically through healthcare providers, cancer organizations, or family and friends-could improve access to helpful peer-to-peer support.

  View details for DOI 10.1002/pon.5758

  View details for PubMedID 34165848

• Greater Financial Toxicity Relates to Greater Distress and Worse Quality of Life Among Breast and Gynecologic Cancer Survivors. Psycho-oncology Benedict, C., Fisher, S., Schapira, L., Chao, S., Sackeyfio, S., Sullivan, T., Pollom, E., Berek, J. S., Kurian, A. W., Palesh, O. 2021

  Abstract

  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).A cross-sectional survey study included measures of financial toxicity (Comprehensive Score for financial Toxicity [COST] Version 2), distress (Patient Health Questionnaire [PHQ-4]), and QOL (Functional Assessment of Cancer Therapy [FACT-G]). 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.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<.001), identifying as a non-Asian minority (p=.03) or Hispanic (p=.01), being single (p<.001), lower education (p=.004), lower income (p<.001), late-stage disease (p=.001), recurrent disease (p=.004), and active treatment (p<.001). In separate multivariable models, greater financial toxicity related to greater distress (β=-.45 p<.001) and worse QOL (β=.58, p<.001). Financial toxicity subgroups reported clinically significant differences in distress and QOL (p's<.05).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. This article is protected by copyright. All rights reserved.

  View details for DOI 10.1002/pon.5763

  View details for PubMedID 34224603

• FINANCIAL TOXICITY RELATES TO GREATER DISTRESS AND WORSE QUALITY OF LIFE AMONG BREAST AND GYNECOLOGIC CANCER SURVIVORS Benedict, C., Fisher, S., Schapira, L., Chao, S., Sackeyfio, S., Sullivan, T., Palesh, O. OXFORD UNIV PRESS INC. 2020: S549

  View details for Web of Science ID 000546262401320

• DETERMINING THE TIMING AND FREQUENCY OF FINANCIAL TOXICITY ASSESSMENTS IN ONCOLOGY PATIENTS Thom, B., Barrow, B., Benedict, C., Korenstein, D., Tran, C., Blinder, V. S. OXFORD UNIV PRESS INC. 2020: S221

  View details for Web of Science ID 000546262400468

• ROADMAP TO PARENTHOOD: DEVELOPMENT OF AN ONLINE DECISION AID AND PLANNING TOOL FOR FAMILY-BUILDING AFTER CANCER Benedict, C., Dauber-Decker, K. L., King, D. S., Ford, J. S., Diefenbach, M. A. OXFORD UNIV PRESS INC. 2020: S575

  View details for Web of Science ID 000546262401373

• TOWARD A THEORETICAL UNDERSTANDING OF YOUNG FEMALE CANCER SURVIVORS' DECISION-MAKING ABOUT FAMILY-BUILDING POST-TREATMENT Benedict, C., Hahn, A. L., McCreedy, A., Kelvin, J. F., Diefenbach, M. A., Ford, J. S. OXFORD UNIV PRESS INC. 2020: S697

  View details for Web of Science ID 000546262401623

• CANCER MANAGEMENT SELF-EFFICACY AND PERCEIVED SOCIAL SUPPORT AMONG YOUNG ADULT SURVIVORS OF CANCER AT A SOCIAL NETWORKING EVENT Ahmad, Z. N., Benedict, C., Ford, J. OXFORD UNIV PRESS INC. 2020: S12

  View details for Web of Science ID 000546262400028

• DO RESEARCH PARTICIPANTS DIFFER BY RECRUITMENT SOURCE?OBSERVATIONS FROM A STUDY OF NEWLY-DIAGNOSED BREAST CANCER PATIENTS Agrawal, A., Benedict, C., Nouriani, B., Medina, J., Kurian, A. W., Spiegel, D. OXFORD UNIV PRESS INC. 2020: S75

  View details for Web of Science ID 000546262400156

• CLINICIAN AWARENESS OF PARENTING CONCERNS IN PATIENTS WITH CANCER Williams, P., Artusio, D. A., Haruno, L. S., Benedict, C., Shaw, R., Ach, E. L., Rauch, P. K., Schapira, L. OXFORD UNIV PRESS INC. 2020: S29

  View details for Web of Science ID 000546262400062

• A Randomized Pilot Study of Mindfulness-Based Stress Reduction in a Young Adult Cancer Sample: Feasibility, Acceptability, and Changes in Patient Reported Outcomes. Psycho-oncology Victorson, D., Murphy, K., Benedict, C., Horowitz, B., Meletich, C., Cordero, E., Salsman, J. M., Smith, K., Sanford, S. 2020

  Abstract

  BACKGROUND: The primary purpose of this study was to examine the feasibility and acceptability of participation in a randomized waitlist-controlled intervention of mindfulness-based stress reduction (MBSR) in a young adult cancer sample. A secondary aim was to examine patterns of change in patient reported outcomes (PROs) of physical, social and emotional functioning.METHODS: Participants were enrolled at a large Midwestern comprehensive cancer center and randomized to MBSR or a waitlist control. Feasibility and acceptability were examined through enrollment metrics and a survey. PROs were gathered at baseline, 8-weeks, and 16-weeks. Descriptive statistics and mixed models were used in analyses.RESULTS: Of 597 eligible participants, 151 (26.5%) consented from which 126 (83.4%) completed baseline measures. Sixty-seven participants were randomized to MBSR, and 59 to the waitlist. Immediately following MBSR, the majority of respondents (72-78%) reported their experience with mindfulness was very logical and useful to increasing their wellbeing. Compared to waitlist members, MBSR participant's scores on PROs improved in expected directions.CONCLUSIONS: Our findings suggest that recruitment for an intensive, in-person, multi-week supportive intervention can be challenging with young adults with cancer, similar to other cancer survivor populations; however once enrolled, feasibility and acceptability of MBSR was supported. Further, initial evidence on the role of MBSR on short-term changes in select PROs with this population was also demonstrated. This article is protected by copyright. All rights reserved.

  View details for DOI 10.1002/pon.5355

  View details for PubMedID 32040222

• Toward a theoretical understanding of young female cancer survivors' decision-making about family-building post-treatment. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Benedict, C., Hahn, A. L., McCready, A., Kelvin, J. F., Diefenbach, M., Ford, J. S. 2020

  Abstract

  PURPOSE: Family-building after gonadotoxic treatment often requires in vitro fertilization, surrogacy, or adoption, with associated challenges such as uncertain likelihood of success, high costs, and complicated laws regulating surrogacy and adoption. This study examined adolescent and young adult female (AYA-F) survivors' experiences and decision-making related to family-building after cancer.METHODS: Semi-structured interviews explored fertility and family-building themes (N=25). Based on an a priori conceptual model, hypothesis coding and grounded theory coding methods guided qualitative analysis.RESULTS: Participants averaged 29years old (SD=6.2) were mostly White and educated. Four major themes were identified: sources of uncertainty, cognitive and emotional reactions, coping behaviors, and decision-making. Uncertainty stemmed from medical, personal, social, and financial factors, which led to cognitive, emotional, and behavioral reactions to reduce distress, renegotiate identity, adjust expectations, and consider "next steps" toward family-building goals. Most AYA-Fs were unaware of their fertility status, felt uninformed about family-building options, and worried about expected challenges. Despite feeling that "action" was needed, many were stalled in decision-making to evaluate fertility or address information needs; postponement and avoidance were common. Younger AYA-Fs tended to be less concerned.CONCLUSION: AYA-Fs reported considerable uncertainty, distress, and unmet needs surrounding family-building decisions post-treatment. Support services are needed to better educate patients and provide opportunity for referral and early preparation for potential challenges. Reproductive counseling should occur throughout survivorship care to address medical, psychosocial, and financial difficulties, allow time for informed decision-making, and the opportunity to prepare for barriers such as high costs.

  View details for DOI 10.1007/s00520-020-05307-1

  View details for PubMedID 31993754

• Cost of survivorship care and adherence to screening-aligning the priorities of health care systems and survivors. Translational behavioral medicine Benedict, C. n., Wang, J. n., Reppucci, M. n., Schleien, C. L., Fish, J. D. 2020

  Abstract

  Childhood cancer survivors (CCS) experience significant morbidity due to treatment- related late effects and benefit from late-effects surveillance. Adherence to screening recommendations is suboptimal. Survivorship care programs often struggle with resource limitations and may benefit from understanding institution-level financial outcomes associated with patient adherence to justify programmatic development and growth. The purpose of this study is to examine how CCS adherence to screening recommendations relates to the cost of care, insurance status, and institution-level financial outcomes. A retrospective chart review of 286 patients, followed in a structured survivorship program, assessed adherence to the Children's Oncology Group follow-up guidelines by comparing recommended versus performed screening procedures for each patient. Procedure cost estimates were based on insurance status. Institutional profit margins and profit opportunity loss were calculated. Bivariate statistics tested adherent versus nonadherent subgroup differences on cost variables. A generalized linear model predicted the likelihood of adherence based on cost of recommended procedures, controlling for age, gender, race, and insurance. Adherence to recommended surveillance procedures was 50.2%. Nonadherence was associated with higher costs of recommended screening procedures compared to the adherent group estimates ($2,469.84 vs. $1,211.44). Failure to perform the recommended tests resulted in no difference in reimbursement to the health system between groups ($1,249.63 vs. $1,211.08). For the nonadherent group, this represented $1,055.13 in "lost profit opportunity" per visit for patients, which totaled $311,850 in lost profit opportunity due to nonadherence in this subgroup. In the final model, nonadherence was related to higher cost of recommended procedures (p < .0001), older age at visit (p = .04), Black race (p = .02), and government-sponsored insurance (p = .03). Understanding institutional financial outcomes related to patient adherence may help inform survivorship care programs and resource allocation. Potential financial burden to patients associated with complex care recommendations is also warranted.

  View details for DOI 10.1093/tbm/ibz182

  View details for PubMedID 31907549

• Patterns of social media use and associations with psychosocial outcomes among breast and gynecologic cancer survivors. Journal of cancer survivorship : research and practice Tolby, L. T., Hofmeister, E. N., Fisher, S. n., Chao, S. n., Benedict, C. n., Kurian, A. W., Berek, J. S., Schapira, L. n., Palesh, O. G. 2020

  Abstract

  We sought to characterize the use of social media (SM) among breast and gynecologic cancer survivors, as well as associations between patterns of SM use and psychosocial outcomes.Two hundred seventy-three breast and gynecologic cancer survivors recruited at the Stanford Women's Cancer Center completed the study. Participants completed questionnaires to measure quality of life (FACT-G), functional social support (Duke-UNC FSSQ), distress (PHQ-4), decision regret (DRS), and SM use.In total, 75.8% of the sample reported using SM. There was no difference in quality of life (QOL), functional social support (FSS), distress, or decision regret between SM users and non-users. SM users indicated using SM for social support (34.3%) and loneliness (24.6%) more than for information-seeking (15.9%), coping (18.8%), or self-disclosure (14%). SM use for coping was associated with lower QOL (p < .001), lower FSS (p < .001), and higher decision regret (p = .029). Use for social support was associated with lower FSS (p = .029). Use for information seeking was associated with lower QOL (p = .012). Use of SM when lonely was associated with lower QOL (p < .001), higher distress (p = .007), lower FSS (p < .001), and higher decision regret (p = .020).Associations between SM use and psychosocial outcomes are nuanced and dependent on motivation for use. Further research is needed to better characterize SM use and associations with psychosocial outcomes among cancer survivors.SM is an important potential avenue for understanding and addressing the psychosocial effects associated with cancer survivorship.

  View details for DOI 10.1007/s11764-020-00959-8

  View details for PubMedID 33161562

• FAMILY-BUILDING AFTER CANCER: UNDERSTANDING PATIENT SUPPORT NEEDS, PREFERENCES FOR SUPPORT, AND RECOMMENDATIONS FOR CARE. Benedict, C., Hahn, A., McCready, A., Diefenbach, M. A., Ford, J. S. ELSEVIER SCIENCE INC. 2019: E380

  View details for DOI 10.1016/j.fertnstert.2019.07.1088

  View details for Web of Science ID 000487821303211

• The Impact of Financial Toxicity on Psychological Well-Being, Coping Self-Efficacy, and Cost-Coping Behaviors in Young Adults with Cancer JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY Thom, B., Benedict, C. 2019; 8 (3): 236–42

  View details for DOI 10.1089/jayao.2018.0143

  View details for Web of Science ID 000473442700002

• Cancer fatalism and adherence to national cancer screening guidelines: Results from the Hispanic Community Health Study/Study of Latinos (HCHS/SOL). Cancer epidemiology Moreno, P. I., Yanez, B. n., Schuetz, S. J., Wortman, K. n., Gallo, L. C., Benedict, C. n., Brintz, C. E., Cai, J. n., Castaneda, S. F., Perreira, K. M., Gonzalez, P. n., Gonzalez, F. n., Isasi, C. R., Penedo, F. J. 2019; 60: 39–45

  Abstract

  Sociocultural factors, such as health insurance status, income, education, and acculturation, predict cancer screening among U.S. Hispanics/Latinos. However, these factors can be difficult to modify. More research is needed to identify individual-level modifiable factors that may improve screening and subsequent cancer outcomes in this population. The aim of this study was to examine cancer fatalism (i.e., the belief that there is little or nothing one can do to lower his/her risk of developing cancer) as a determinant of adherence to national screening guidelines for colorectal, breast, prostate, and cervical cancer among Hispanics/Latinos.Participants were from the multi-site Hispanic Community Health Study/Study of Latinos (HCHS/SOL) Sociocultural Ancillary Study (N = 5313). The National Cancer Institute (NCI) Health Interview National Trends Survey was used to assess cancer fatalism and receipt of cancer screening. Adherence was defined as following screening guidelines from United States Preventive Services Task Force and the American Cancer Society during the study period.Adjusting for well-established determinants of cancer screening and covariates (health insurance status, income, education, acculturation, age, Hispanic/Latino background), lower cancer fatalism was marginally associated with greater adherence to screening for colorectal (OR 1.13, 95% CI [.99-1.30], p = .07), breast (OR 1.16, 95% CI [.99-1.36], p = .08) and prostate cancer (OR 1.18, 95% CI [.97-1.43], p = .10), but not cervical cancer.The associations of cancer fatalism were small and marginal, underlining that sociocultural factors are more robust determinants of cancer screening adherence among Hispanics/Latinos.

  View details for DOI 10.1016/j.canep.2019.03.003

  View details for PubMedID 30904827

• Recruitment via social media: advantages and potential biases. Digital health Benedict, C., Hahn, A. L., Diefenbach, M. A., Ford, J. S. 2019; 5: 2055207619867223

  Abstract

  Background: Adolescent and young adult (AYA) cancer survivors are under-represented in research. Social media is increasingly used for recruitment given its ability to reach large audiences. Differences in participant characteristics and potential biases due to recruitment source are not well understood.Purpose: This study aimed to: (a) compare recruitment strategies (hospital-based v. social media) in enrollment metrics, and (b) among enrolled participants, evaluate group differences in patient characteristics and patient reported outcomes (PROs).Methods: Preliminary data from a cancer and fertility study with female AYAs were evaluated. Hospital-based recruitment used electronic medical records (EMR) to identify eligible patients. Social media recruitment involved posting on partner organizations' social media outlets. PROs included validated measures related to the parent study. Descriptive statistics evaluated recruitment metrics. Independent samples t-tests and chi-square identified differences in participant characteristics and PROs based on recruitment.Results: Social media yielded a higher enrollment rate (37%; n=54/146) compared with hospital-based recruitment (7%; n=21/289) and required fewer study resources. Compared with hospital-based recruitment, participants from social media were more likely to be White (p=0.01), with a longer time since treatment (p=0.03); and reported higher levels of reproductive concern (p=0.004) and negative mood (p=0.02), and more negative illness perceptions (ps<0.05).Conclusion: Recruitment via social media may be a more effective and efficient strategy compared with hospital-based methods. However, group differences were identified that could bias findings and limit generalizability. Advantages of social media should be considered with an understanding of how methodology may impact enrollment and results.

  View details for DOI 10.1177/2055207619867223

  View details for PubMedID 31431827

• Peer-To-Peer Connections: Perceptions of a Social Support App Designed for Young Adults with Cancer. Psycho-oncology Lazard, A. J., Saffer, A. J., Horrell, L. n., Benedict, C. n., Love, B. n. 2019

  Abstract

  Social support is a critical, yet frequently unmet, need among young adults (YAs) with cancer. YAs desire age-appropriate resources to connect with peers. Peer-to-peer mobile apps are promising interventions to provide social support. Peer-to-peer apps will be more effective if development incorporates users' input for whether app designs (look and function) afford meaningful connections.We interviewed 22 YAs to assess perceptions of a peer-to-peer app at a young adult cancer convention in April 2017.Participants were an average age of 29, mostly female (77%), White (73%), and well educated (68% with 4-year college degree or higher). Most participants expressed interested in using an app to connect with YAs, but preferences varied by prevalence or rarity of one's cancer diagnosis. YAs shared trade-offs for profile anonymity versus profiles with more personal information, requests for filter options to connect for varying support needs, and desires for tailored messaging and chat room features (e.g., topic-specific, search capabilities).Findings demonstrate the promise of apps to fulfill YA cancer survivors' unmet peer support needs and provide guidance for app optimization.Peer-to-peer support apps should be designed so users can control their identity and customize features for meaningful connections.

  View details for DOI 10.1002/pon.5220

  View details for PubMedID 31483913

• "Creating a family after battling cancer is exhausting and maddening": Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment PSYCHO-ONCOLOGY Benedict, C., McLeggon, J., Thom, B., Kelvin, J. F., Landwehr, M., Watson, S., Ford, J. S. 2018; 27 (12): 2829–39

  Abstract

  Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial concerns of survivors pursuing family building through assisted reproductive technology (ART) and adoption.Retrospective study of data collected from grant applications for financial assistance with family building. Grounded theory methodology using an inductive data-driven approach guided qualitative data analysis.Participants (N = 46) averaged 32 years old (SD = 3.4) were primarily female (81%) and married/partnered (83%). Four main themes were identified representing the (1) emotional experiences and (2) financial barriers to family building after cancer, (3) perceived impact on partners, and (4) disrupted life trajectory. Negative emotions were pervasive but were balanced with hope and optimism that parenthood would be achieved. Still, the combination of high ART/adoption costs, the financial impact of cancer, and limited sources for support caused extreme financial stress. Further, in the face of these high costs, many survivors reported worry and guilt about burdening partners, particularly as couples failed to meet personal and societal expectations for parenthood timelines.After cancer, YAs face numerous psychosocial and financial difficulties in their pursuits of family building when ART/adoption is needed to achieve parenthood. Survivors interested in future children may benefit from follow-up fertility counseling post-treatment including discussion of ART options, surrogacy, and adoption, as appropriate, and potential barriers. Planning for the financial cost and burden in particular may help to avoid or mitigate financial stress later on.

  View details for PubMedID 30238545

• The Intersection of Financial Toxicity and Family Building in Young Adult Cancer Survivors CANCER Thom, B., Benedict, C., Friedman, D. N., Kelvin, J. F. 2018; 124 (16): 3284–89

  View details for PubMedID 29924381

  View details for PubMedCentralID PMC6108923

• Fertility information needs and concerns post-treatment contribute to lowered quality of life among young adult female cancer survivors SUPPORTIVE CARE IN CANCER Benedict, C., Thom, B., Friedman, D. N., Pottenger, E., Raghunathan, N., Kelvin, J. F. 2018; 26 (7): 2209–15

  Abstract

  Cancer treatment may lead to premature menopause and infertility. Young adult female cancer survivors (YAFCS) are often concerned about their fertility and future family-building options, but research is limited on how concerns may affect more general quality of life (QOL) domains. This study examined how fertility factors relate to QOL among YAFCS who received gonadotoxic therapy.A national sample of YAFCS completed an online, anonymous survey. The survey included investigator-designed questions about perceived fertility information needs (five items; Cronbach's α = .83) and general QOL (four items; α = .89), the Reproductive Concerns after Cancer Scale (RCACS) and Decisional Conflict Scale (DCS). Analyses included Pearson's correlation, t tests, and stepwise regression.Participants (N = 314) were an average of 30 years old (SD = 4.1) and 5 years (SD = 5.4) post-treatment; 31% reported being infertile and 19% had undergone fertility preservation (FP). Overall, QOL was relatively high (M = 7.3, SD = 1.9, range 0-10) and did not vary by fertility status (t[272] = .743, p = .46), prior FP (t[273] = .53, p = .55) or sociodemographic/clinical factors (p's > .05) except socioeconomic indicators (p's < .05).In separate models, greater unmet fertility information needs (β = - .19, p = .004) and, among fertile women, greater reproductive concerns (β = - .26, p = .001) related to lower QOL. Among fertile women without prior FP, greater decisional distress about future FP related to lower QOL (β = - .19, p = .03).These preliminary findings suggest that unaddressed fertility information needs, concerns, and decision distress may affect general QOL among post-treatment YAFCS who hope to have children in the future. Future work should identify ways to optimally incorporate fertility counseling and support resources into survivorship care programs, including referrals to reproductive specialists as appropriate.

  View details for PubMedID 29387996

  View details for PubMedCentralID PMC5984121

• Reduction in social activities mediates the relationship between diarrhea and distress in rectal/anal cancer survivors PSYCHO-ONCOLOGY Benedict, C., DuHamel, K., Nelson, C. J. 2018; 27 (2): 691–94

  View details for PubMedID 28665010

  View details for PubMedCentralID PMC5748015

• Young Adult Female Cancer Survivors' Concerns About Future Children's Health and Genetic Risk JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY Raghunathan, N., Benedict, C., Thom, B., Friedman, D., Kelvin, J. 2018; 7 (1): 125–29

  Abstract

  Betamethasone (BMZ) is commonly administered to patients with fetal growth restriction (FGR) and abnormal umbilical artery Doppler (UAD) velocimetry due to the increased risk of preterm delivery; however, the clinical impact of UAD changes after BMZ exposure is unknown.To test the hypothesis that lack of UAD improvement after BMZ administration is associated with shorter latency and greater neonatal morbidity in patients with FGR.This was a retrospective cohort study of pregnancies complicated by FGR and abnormal UAD between 240 and 336 weeks gestation. Abnormal UAD included the following categories of increasing severity: elevated (pulsatility index >95%), absent end diastolic flow (EDF), or reversed EDF improvement was defined as any improvement in category of UAD within two weeks of BMZ. Sustained improvement was defined as improvement until the last ultrasound before delivery, whereas transient improvement was considered as unsustained. The primary outcome was latency, defined as interval from betamethasone administration to delivery. Secondary outcomes were gestational age at delivery, umbilical artery pH, and a composite of neonatal morbidity (intubation, necrotizing enterocolitis, ionotropic support, intraventricular hemorrhage, total parenteral nutrition, neonatal death). Outcomes were compared between (a) patients with and without UAD improvement and (b) patients with sustained and unsustained improvement, using univariable, multivariable and time-to-event analyses.Of the 222 FGR pregnancies with abnormal UAD, 94 received BMZ and had follow-up ultrasounds. UAD improved in 48 (51.1%), with 27 (56.3%) having sustained improvement. Patients with hypertension and drug use were less likely to have UAD improvement. Patients without UAD improvement had shorter latency (21.5 days [interquartile range (IQR) 8,45] versus 35 [IQR 22,61], p = .02) and delivered at an earlier gestational age (34 weeks [IQR 31,36] versus 37 [IQR 33,37], p < .01) than those with improvement. There were no differences in umbilical artery pH between groups. Composite neonatal morbidity was higher in patients without UAD improvement, but this was not statistically significant after adjusting for confounders (aOR 2.0; 95% CI 0.08-5.1). There were no differences in outcomes between patients with sustained versus unsustained improvement.UAD improved in half of patients following BMZ. Lack of UAD improvement was associated with shorter latency and earlier gestational age at delivery, but no difference in composite neonatal morbidity. UAD response to BMZ may be useful to further risk stratify FGR pregnancies.

  View details for DOI 10.1089/jayao.2017.0050

  View details for Web of Science ID 000423412000001

  View details for PubMedID 29863424

• Communication and comprehensive cancer control coalitions: lessons from two decades of campaigns, outreach, and training. Cancer causes & control : CCC Love, B. n., Benedict, C. n., Van Kirk Villalobos, A. n., Cone, J. N. 2018; 29 (12): 1239–47

  Abstract

  Comprehensive cancer control (CCC) coalitions and programs have delivered effective models and approaches to reducing cancer burden across the United States over the last two decades. Communication plays an essential role in diverse coalition activities from prevention to survivorship, including organizational and community capacity-building and as cancer control intervention strategies.Based upon a review of published CCC research as well as public health communication best practices, this article describes lessons learned to assist CCC coalitions and programs with systematic implementation of communication efforts as key strategies in cancer control.Communication-oriented lessons include (1) effective communication work requires listening and ongoing engagement with key stakeholders, (2) communication interventions should target multiple levels from interpersonal to mediated channels, (3) educational outreach can be a valuable opportunity to bolster coalition effectiveness and cancer control outcomes, and (4) dedicated support is necessary to ensure consistent communication efforts.External and internal communication strategies can optimize coalition efforts and resources to ultimately help produce meaningful improvement in cancer control outcomes.

  View details for PubMedID 30535669

• The Audacity of Engagement: Hearing Directly from Young Adults with Cancer on Their Attitudes and Perceptions of Cancer Survivorship and Cancer Survivorship Research. Journal of adolescent and young adult oncology Benedict, C. n., Victorson, D. n., Love, B. n., Fuehrer, D. n., Lazard, A. n., Saffer, A. J., Linscott, T. n., Zachary, M. n. 2018; 7 (1): 103–11

  Abstract

  Young adult (YA) cancer survivors have been historically under-represented in cancer survivorship research, which has contributed to more disparate health outcomes compared with young and older cancer survivors. Using qualitative methods, this study explored YAs' perceptions of cancer survivorship and identified YA-specific barriers and preferences for participation in cancer survivorship research.Individual interviews and focus groups were conducted with YA cancer survivors (N = 19) attending a patient-focused oncology conference. Grounded theory methodology guided analyses by using an inductive data-driven approach to thematic content analysis.Participants averaged 33 years old (standard deviation [SD] = 5.5), were 10 years postdiagnosis (SD = 2.3), and were primarily female (79%). Key cancer survivorship topics included adjusting to a "new normal," staying connected with cancer peers, and dealing with post-treatment medical care. Perceptions of YA survivorship research were mixed. YAs appreciated and were optimistic about the potential for benefit from research. Specific barriers for participation included perceptions of research being inaccessible, overwhelming, and frustrating; participation as inconvenient and burdensome; and researchers being viewed with skepticism and mistrust. They recommended: (1) making age-appropriate, patient-focused changes (e.g., language and design of study materials); (2) increasing participants' control, flexibility, and convenience of procedures; and (3) creating a back-and-forth dialogue between YAs and researchers.We assessed YA survivors' perceptions of YA cancer survivorship and research. Communication strategies are needed to address negative perceptions and perceived barriers to research participation. This includes tailoring of dissemination efforts and developmentally targeted implementation of YA priorities into the research process. Age-specific, patient-focused research practices may foster trust within the YA cancer survivor community and improve research participation.

  View details for DOI 10.1089/jayao.2017.0038

  View details for PubMedID 29022839

• Young Adult Female Cancer Survivors' Concerns About Future Children's Health and Genetic Risk. Journal of adolescent and young adult oncology Raghunathan, N. J., Benedict, C. n., Thom, B. n., Friedman, D. N., Kelvin, J. F. 2018; 7 (1): 125–29

  Abstract

  As young adult female cancer survivors (aged 18-35) make family-building decisions, understanding the specific nature of their concerns is important. We evaluated survivors' concerns about potential health risks to future children including genetic susceptibility for cancer with an internet-based survey study (N = 187). Sixty-five percent reported concern about passing on a genetic cancer risk to their children, and scores did not vary regardless of association with cancer at high risk for genetic transmission. Genetic counseling and education about family-building options may be important to survivors concerned about health risks to offspring to support family-building decisions based on personalized medical information.

  View details for PubMedID 29364765

  View details for PubMedCentralID PMC5813728

• Examining the impact of a multimedia intervention on treatment decision-making among newly diagnosed prostate cancer patients: results from a nationwide RCT. Translational behavioral medicine Diefenbach, M. A., Benedict, C. n., Miller, S. M., Stanton, A. L., Ropka, M. E., Wen, K. Y., Fleisher, L. G., Mohamed, N. E., Hall, S. J. 2018; 8 (6): 876–86

  Abstract

  Men diagnosed with early stage prostate cancer face multiple treatment options, each with distinctive side effects that have significant implications for post-treatment quality of life. Healing Choices for Men with Prostate Cancer is a multimedia educational and decision aid program. This nation-wide randomized controlled trial evaluated the impact of Healing Choices on reducing decisional conflict and distress. Eligible prostate cancer patients who called the National Cancer Institute's Cancer Information Service (CIS) were invited to participate. After a baseline interview, participants were randomized to usual personalized consultation with a CIS specialist (comparison condition) or CIS personalized consultation plus the Healing Choices program (intervention condition). The Decision Conflict Scale and Impact of Event Scale assessed decisional conflict about prostate cancer treatment and cancer-related distress, respectively. Analyses evaluated group differences at 2 months postenrollment. Hypothesized moderation of intervention effects by demographic and clinical characteristics were evaluated. The final sample consisted of N = 349 participants (intervention: n = 181; comparison n = 168). Men were on average 64 years old, primarily White, and well educated. The difference in total decisional conflict was not significant (DCS total score; F[1,311] = .99, p = .32). The difference in cancer-related distress at 2 months between the intervention and the comparison groups was not significant (F[1,337] = .01, p = .93). Evaluation of specific decision processes indicated a significant effect on levels of perceived decisional support (intervention, M = 34.8, SD = 15.7; comparison, M = 38.3, SD = 16.1; F[1,337] = 3.74, p = .05). The intervention effect was greatest for nonwhite minority participants (b = -9.65, SE = 4.67) and those with lower educational attainment (b = 3.87, SE = 2.21). This interactive, comprehensive education and decision aid program may be most effective for a subset of prostate cancer patients in need of educational and decisional support.

  View details for PubMedID 29982747

  View details for PubMedCentralID PMC6248862

• Family-building After Breast Cancer: Considering the Effect on Adherence to Adjuvant Endocrine Therapy CLINICAL BREAST CANCER Benedict, C., Thom, B., Teplinsky, E., Carleton, J., Kelvin, J. F. 2017; 17 (3): 165–70

  Abstract

  Adherence to endocrine therapy (ET) is a longstanding problem in breast cancer (BC) survivorship care, particularly among younger women. Younger patients have reported lower ET initiation rates and greater rates of early discontinuation and are considered an "at risk" group for nonadherence. For women who hope to have children in the future, concerns about premature menopause and the implications of postponing childbearing for the 5 to 10 years of ET are widespread. Preliminary evidence suggests that prioritizing fertility, along with concerns about side effects, leads to ET noninitiation and early discontinuation. Clinical efforts to improve adherence might need to consider patients' family-building goals during the course of treatment and to appropriately counsel patients according to their priorities and family-building intentions. Educational materials about family building after cancer are still not consistently available or provided. Helping patients to access trusted informational resources and decision support tools, in conjunction with medical counseling, will promote informed decisions regarding ET adherence and pregnancy that are medically appropriate. Such shared patient-provider decision-making about ET adherence and pregnancy could help to maximize patient autonomy by incorporating their values, preferences, and priorities into decisions, using providers' medical expertise.

  View details for PubMedID 28087390

• Reply to "Twistin' the Night Away": Fertility Preservation in Young Adult Female Cancer Survivors CANCER Benedict, C., Thom, B., Friedman, D. N., Diotallevi, D., Pottenger, E. M., Raghunathan, N. J., Kelvin, J. F. 2017; 123 (4): 708–9

  View details for PubMedID 27727450

• Young patients and gastrointestinal (GI) tract malignancies - are we addressing the unmet needs? BMC CANCER Perl, G., Nordheimer, S., Lando, S., Benedict, C., Brenner, B., Perry, S., Shmoisman, G., Purim, O., Amit, L., Stemmer, S. M., Ben-Aharon, I. 2016; 16: 630

  Abstract

  Recent epidemiological studies indicate the rate of gastrointestinal (GI) malignancies among younger patients is increasing, mainly due to colorectal cancer. There is a paucity of data regarding the magnitude of treatment-related symptoms, psychosocial issues and potential unmet needs in this population. We aimed to characterize the needs of this population to evaluate whether unmet needs could be targeted by potential intervention.Female and male patients diagnosed with cancer of the gastrointestinal tract <40y retrospectively completed a questionnaire to evaluate symptoms, daily function and unmet needs at pre-treatment, during and post-treatment. Comparisons were made by gender, disease stage and treatment modality. Multiple linear regression models evaluated effects of demographics, symptoms and needs on multiple domains of health-related-quality-of-life (using Short-Form Health Survey-12 and CARES).Fifty patients were enrolled (52 % female) to a pilot study. Median age at diagnosis was 35.5y (range, 21-40y). The symptoms that significantly increased from baseline to during and post-treatment were: diarrhea (37 %), sleeping disorder (32 %) and sexual dysfunction (40 %). Patients also reported significant deterioration in occupational activities and coping with children compared with baseline. Female patients reported significant unmet need for nutritional counseling and psychosocial support compared to male patients (p < 0.05). Patients treated with multimodality-treatment presented higher rates of unmet needs (p = 0.03).Young patients with GI cancers represent a group with unique characteristics and needs compared with published evidence on other young-onset malignancies. The distinctive symptoms and areas of treatment-related functional impairments indicate there are unmet needs, especially in the area of psychosocial support and nutritional counseling.

  View details for DOI 10.1186/s12885-016-2676-4

  View details for Web of Science ID 000384181200001

  View details for PubMedID 27519697

  View details for PubMedCentralID PMC4983017

• Young adult female cancer survivors' unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation CANCER Benedict, C., Thom, B., Friedman, D. N., Diotallevi, D., Pottenger, E. M., Raghunathan, N. J., Kelvin, J. F. 2016; 122 (13): 2101–9

  Abstract

  Many young adult female cancer survivors (YAFCS) are at risk of experiencing premature menopause. The current study characterized the posttreatment fertility information needs, reproductive concerns, and decisional conflict regarding future options for posttreatment fertility preservation (FP) among YAFCS.Participants completed a Web-based, anonymous survey between February and March 2015. The survey included investigator-designed questions of perceived information needs, the Reproductive Concerns After Cancer Scale, and the Decisional Conflict Scale. Analyses included Pearson correlation coefficients, independent-sample Student t tests, and multiple regression.There was a total of 346 participants with an average age of 29.9 years (SD = 4.1 years) who were 4.9 years from treatment (SD = 5.4 years [range, 0-27 years]). The main analyses focused on a subgroup of YAFCS with uncertain fertility status who had not previously undergone/attempted FP and either wanted future children or were unsure (179 women). Across fertility information topics, 43% to 62% of participants reported unmet information needs. The greatest reproductive concerns were related to fertility potential and the health of future offspring. The regression model controlled for a priori covariates including current age, age at treatment completion, income, relationship status, nulliparity, and prior fertility evaluation. Greater unmet information needs were found to be related to greater decisional conflict (β = .43; p<.001); greater reproductive concerns were associated at the trend level (β = .14, p = .08; F[8,118] = 6.42, p<.001).YAFCS with limited awareness or knowledge of their risk of experiencing premature menopause and FP options reported higher levels of decisional conflict regarding future FP. Posttreatment survivorship care should include comprehensive reproductive health counseling, including posttreatment FP options and family-building alternatives. Cancer 2016;122:2101-9. © 2016 American Cancer Society.

  View details for PubMedID 27213483

  View details for PubMedCentralID PMC4911318

• Cancer and Fertility Program Improves Patient Satisfaction With Information Received JOURNAL OF CLINICAL ONCOLOGY Kelvin, J. F., Thom, B., Benedict, C., Carter, J., Corcoran, S., Dickler, M. N., Goodman, K. A., Margolies, A., Matasar, M. J., Noy, A., Goldfarb, S. B. 2016; 34 (15): 1780-+

  Abstract

  A cancer and fertility program was established at a large cancer center to support clinicians in discussing treatment-related fertility risks and fertility preservation (FP) options with patients and in referring patients to reproductive specialists. The program provides resources, clinician education, and fertility clinical nurse specialist consultation. This study evaluated the program's impact on patient satisfaction with information received.Retrospective cross-sectional surveys assessed satisfaction before (cohort 1 [C1]) and after (cohort 2 [C2]) program initiation. Questionnaires were investigator-designed, gender-specific, and anonymous.Most C1 (150 males, 271 females) and C2 (120 males, 320 females) respondents were 2 years postdiagnosis; the most frequently reported cancers were testicular, breast, and lymphoma. A significant difference in satisfaction with the amount of information received was seen between C1 and C2. For males, satisfaction with information on fertility risks was high in both cohorts but significantly greater in C2 for information on sperm banking (χ(2) = 9.3, P = .01) and finding a sperm bank (χ(2) = 13.3, P = .001). For females, satisfaction with information was significantly greater in C2 for information on fertility risks (χ(2) = 62.1, P < .001), FP options (χ(2) = 71.9, P < .001), help with decision making (χ(2) = 80.2, P < .001), and finding a reproductive endocrinologist (χ(2) = 60.5, P < .001). Among patients who received and read information materials, 96% of males and 99% of females found them helpful. Among C2 females, fertility clinical nurse specialist consultation was associated with significantly greater satisfaction with information on FP options (χ(2) = 11.2, P = .004), help with decision making (χ(2) = 10.4, P = .006), and finding a reproductive endocrinologist (χ(2) = 22.6, P < .001), with 10% reporting lack of knowledge as a reason for not pursuing FP.Improvements in patient satisfaction with information received demonstrate the potential for fertility programs in cancer care settings to improve the quality of clinician-patient discussions about fertility.

  View details for PubMedID 27044937

  View details for PubMedCentralID PMC4966338

• Investigation of body image as a mediator of the effects of bowel and GI symptoms on psychological distress in female survivors of rectal and anal cancer SUPPORTIVE CARE IN CANCER Benedict, C., Rodriguez, V. M., Carter, J., Temple, L., Nelson, C., DuHamel, K. 2016; 24 (4): 1795–1802

  Abstract

  Treatment for rectal and anal cancer (RACa) can result in persistent bowel and gastrointestinal (GI) dysfunction. Body image problems may develop over time and exacerbate symptom-related distress. RACa survivors are an understudied group, however, and factors contributing to post-treatment well-being are not well understood. This study examined whether poorer body image explained the relation between symptom severity and psychological distress.Participants (N = 70) completed the baseline assessment of a sexual health intervention study. Bootstrap methods tested body image as a mediator between bowel and GI symptom severity and two indicators of psychological distress (depressive and anxiety symptoms), controlling for relevant covariates. Measures included the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC-QLQ-CR38) Diarrhea, GI Symptoms, and Body Image subscales and Brief Symptom Index Depression and Anxiety subscales.Women averaged 55 years old (SD = 11.6), White (79 %), and were 4 years post-treatment. Greater Depression was related to poorer Body Image (r = -.61) and worse Diarrhea (r = .35) and GI Symptoms (r = .48). Greater Anxiety was related to poorer Body Image (r = -.42) and worse GI Symptoms (r = .45), but not Diarrhea (r = .20). Body Image mediated the effects of bowel and GI symptoms on Depression, but not on Anxiety.Long-term bowel and GI dysfunction are distressing and affect how women perceive and relate to their bodies, exacerbating survivorship difficulties. Interventions to improve adjustment post-treatment should address treatment side effects, but also target body image problems to alleviate depressive symptoms. Reducing anxiety may require other strategies. Body image may be a key modifiable factor to improve well-being in this understudied population. Longitudinal research is needed to confirm findings.

  View details for PubMedID 26446699

  View details for PubMedCentralID PMC4862400

• Body image and sexual function in women after treatment for anal and rectal cancer PSYCHO-ONCOLOGY Benedict, C., Philip, E. J., Baser, R. E., Carter, J., Schuler, T. A., Jandorf, L., DuHamel, K., Nelson, C. 2016; 25 (3): 316–23

  Abstract

  Treatment for anal and rectal cancer (ARCa) often results in side effects that directly impact sexual functioning; however, ARCa survivors are an understudied group, and factors contributing to the sexual sequelae are not well understood. Body image problems are distressing and may further exacerbate sexual difficulties, particularly for women. This preliminary study sought to (1) describe body image problems, including sociodemographic and disease/treatment correlates, and (2) examine relations between body image and sexual function.For the baseline assessment of a larger study, 70 women completed the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire and Colorectal Cancer-specific Module, including the Body Image subscale, and Female Sexual Function Index. Pearson's correlation and multiple regression evaluated correlates of body image. Among sexually active women (n = 41), hierarchical regression examined relations between body image and sexual function domains.Women were on average 55 years old (standard deviation = 11.6), non-Hispanic White (79%), married (57%), and employed (47%). The majority (86%) reported at least one body image problem. Younger age, lower global health status, and greater severity of symptoms related to poorer body image (p's < 0.05). Poor body image was inversely related to all aspects of sexual function (β range 0.50-0.70, p's < 0.05), except pain. The strongest association was with Female Sexual Function Index Sexual/Relationship Satisfaction.These preliminary findings suggest the importance of assessing body image as a potentially modifiable target to address sexual difficulties in this understudied group. Further longitudinal research is needed to inform the development and implementation of effective interventions to improve the sexual health and well-being of female ARCa survivors.

  View details for PubMedID 25974874

  View details for PubMedCentralID PMC4961045

• Fertility Issues in Adolescent and Young Adult Cancer Survivors JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY Benedict, C., Shuk, E., Ford, J. S. 2016; 5 (1): 48–57

  Abstract

  Many adolescent and young adult (AYA) cancer survivors place great importance on fertility. This study explored AYAs' discussions of fertility in the context of discussing their survivorship experiences.Secondary analyses of a qualitative study of young adult survivors of adolescent cancers ("AYA survivors") was performed using semistructured individual interviews and focus groups. Analyses were conducted using grounded theory using thematic content analysis with an inductive data-driven approach.Participants (n = 43) were 16-24 years old, diagnosed with cancer between ages 14 and 18 years, and were at least 6 months post-treatment. Before treatment, 5 males banked sperm and no females preserved fertility. More males (50%) than females (39%) reported uncertainty about their fertility. Three major categories emerged from the data: fertility concerns, emotions raised when discussing fertility, and strategies used to manage fertility concerns. Fertility concerns focused on dating/partner reactions, health risks, and what potential infertility would mean for their life narrative. Emotions included distress, feeling overwhelmed and hopeful/wishful thinking. Females were more likely to feel distressed and overwhelmed than males. Strategies to manage concerns included acceptance/"making do," desire to postpone concerns, and reliance on assisted reproductive technology.Most AYAs in our study reported a number of reproductive concerns and fertility-related distress after treatment, which may affect other areas of psychosocial functioning. Females may be more at-risk for distress than males, particularly in situations of uncertainty and limited knowledge. Future work should explore how to best incorporate fertility-related informational and support services more fully into survivorship care. Implications for survivorship care are discussed.

  View details for PubMedID 26812452

  View details for PubMedCentralID PMC4779291

• Fertility preservation and cancer: challenges for adolescent and young adult patients CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE Benedict, C., Thom, B., Kelvin, J. F. 2016; 10 (1): 87–94

  Abstract

  With increasing survival rates, fertility is an important quality of life concern for many young cancer patients. There is a critical need for improvements in clinical care to ensure patients are well informed about infertility risks and fertility preservation options and to support them in their reproductive decision-making prior to treatment.Several barriers prevent fertility from being adequately addressed in the clinical context. Providers' and patients' incomplete or inaccurate understanding of infertility risks exacerbate patients' reproductive concerns. For female patients in particular, making decisions about fertility preservation before treatment often leads to decision conflict, reducing the likelihood of making informed, value-based decisions, and posttreatment regret and distress. Recent empirically based interventions to improve provider training around fertility issues and to support patient decision-making about fertility preservation show promise.Providers should be knowledgeable about the infertility risks associated with cancer therapies and proactively address fertility with all patients who might one day wish to have a child. Comprehensive counseling should also include related issues such as contraceptive use and health implications of early menopause, regardless of desire for future children. Although the negative psychosocial impact of cancer-related infertility is now well accepted, limited work has been done to explore how to improve clinical management of fertility issues in the context of cancer care. Evidence-based interventions should be developed to address barriers and provide psychosocial and decision-making support to patients who are concerned about their fertility and interested in fertility preservation options.

  View details for PubMedID 26730794

  View details for PubMedCentralID PMC4752165

• Young Adult Female Cancer Survivors' Decision Regret About Fertility Preservation JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY Benedict, C., Thom, B., Kelvin, J. F. 2015; 4 (4): 213–18

  Abstract

  This study evaluated fertility-related experiences of young adult female cancer survivors (18-39 years). Data were from a retrospective, cross-sectional survey. Women were more likely to undergo pre-treatment fertility preservation (FP) if they received fertility counseling (by a fertility nurse specialist, reproductive endocrinologist, or gynecologist). Compared with women who underwent FP, those who did not had greater decision regret (DR) after treatment (p < 0.001). Multiple reasons for not pursuing FP were reported; lack of time and distress related to more DR and not wanting children in the future related to less DR (p < 0.05). Decision regret may lead to psychosocial morbidity in survivorship.

  View details for PubMedID 26697271

  View details for PubMedCentralID PMC4684663

• Positive and negative mood in men with advanced prostate cancer undergoing androgen deprivation therapy: considering the role of social support and stress PSYCHO-ONCOLOGY Benedict, C., Dahn, J. R., Antoni, M. H., Traeger, L., Kava, B., Bustillo, N., Zhou, E. S., Penedo, F. J. 2015; 24 (8): 932–39

  Abstract

  Advanced prostate cancer patients often undergo androgen deprivation therapy (ADT). Advanced disease and adverse ADT side effects are often debilitating and negatively impact mood. Social support has been shown to mitigate detrimental effects of stress on mood.This study sought to characterize positive and negative mood in this select patient population and determine whether social support moderated relations between stress and mood.Participants (N = 80) completed the Interpersonal Support Evaluation List, Perceived Stress Scale, and Derogatis Affect Balance Scale at a single time point. Hierarchical regression models evaluated relations among social support, stress, and mood controlling for relevant covariates. Standard moderation analyses were performed.Participants reported higher levels of negative and positive mood compared with published means of localized prostate cancer patients. Overall, mood was more positive than negative. Stress levels were comparable to cancer populations with recurrent disease. Moderated regression analyses showed that social support partially buffered the effects of stress on positive mood; men with high stress and low support reported the lowest levels of positive mood. The model with negative mood as the dependent measure did not support moderation; that is, the relationship between stress and negative mood did not differ by level of social support.Among individuals living with advanced prostate cancer, social support may be an important factor that sustains positive mood in the presence of stress. Future work should examine the extent to which social support prospectively impacts health-related quality of life by promoting positive mood. Limitations include cross-sectional design, which precludes causal inferences.

  View details for PubMedID 25251737

• Sexual Bother in Men with Advanced Prostate Cancer Undergoing Androgen Deprivation Therapy JOURNAL OF SEXUAL MEDICINE Benedict, C., Traeger, L., Dahn, J. R., Antoni, M., Zhou, E. S., Bustillo, N., Penedo, F. J. 2014; 11 (10): 2571–80

  Abstract

  Men with advanced prostate cancer (APC) undergoing androgen deprivation therapy (ADT) often experience distressing sexual side effects. Sexual bother is an important component of adjustment. Factors associated with increased bother are not well understood.This study sought to describe sexual dysfunction and bother in APC patients undergoing ADT, identify socio-demographic and health/disease-related characteristics related to sexual bother, and evaluate associations between sexual bother and psychosocial well-being and quality of life (QOL).Baseline data of a larger psychosocial intervention study was used. Pearson's correlation and independent samples t-test tested bivariate relations. Multivariate regression analysis evaluated relations between sexual bother and psychosocial and QOL outcomes.The Expanded Prostate Cancer Index Composite sexual function and bother subscales, Center for Epidemiologic Studies Depression Scale, Functional Assessment of Cancer Therapy--General, and Dyadic Adjustment Scale were the main outcome measures.Participants (N = 80) were 70 years old (standard deviation [SD] = 9.6) and reported 18.7 months (SD = 17.3) of ADT. Sexual dysfunction (mean = 10.1; SD = 18.0) was highly prevalent. Greater sexual bother (lower scores) was related to younger age (β = 0.25, P = 0.03) and fewer months of ADT (β = 0.22, P = 0.05). Controlling for age, months of ADT, current and precancer sexual function, sexual bother correlated with more depressive symptoms (β = -0.24, P  = 0.06) and lower QOL (β = 0.25, P = 0.05). Contrary to hypotheses, greater sexual bother was related to greater dyadic satisfaction (β = -0.35, P = 0.03) and cohesion (β = -0.42, P = 0.01).The majority of APC patients undergoing ADT will experience sexual dysfunction, but there is variability in their degree of sexual bother. Psychosocial aspects of sexual functioning should be considered when evaluating men's adjustment to ADT effects. Assessment of sexual bother may help identify men at risk for more general distress and lowered QOL. Psychosocial interventions targeting sexual bother may complement medical treatments for sexual dysfunction and be clinically relevant, particularly for younger men and those first starting ADT.

  View details for PubMedID 25059094

• SEXUAL BOTHER IN MEN WITH ADVANCED PROSTATE CANCER UNDERGOING HORMONE THERAPY Benedict, C., Traeger, L., Rasheed, M., Zhou, E., Bustillo, N., Kava, B., Soloway, M., Antoni, M., Penedo, F. SPRINGER. 2014: S11

  View details for Web of Science ID 000334408300040

• QUALITY OF LIFE IN MEN WITH PROSTATE CANCER: LONG-TERM EFFECTS OF A PSYCHOSOCIAL INTERVENTION Benedict, C., Traeger, L., Rasheed, M., Zhou, E., Bustillo, N. E., Kava, B., Soloway, M., Antoni, M., Penedo, F. J. SPRINGER. 2013: S258

  View details for Web of Science ID 000209928001588

• Identifying how and for whom cognitive-behavioral stress management improves emotional well-being among recent prostate cancer survivors PSYCHO-ONCOLOGY Traeger, L., Penedo, F. J., Benedict, C., Dahn, J. R., Lechner, S. C., Schneiderman, N., Antoni, M. H. 2013; 22 (2): 250–59

  Abstract

  The outcomes of a 10-week cognitive-behavioral stress management (CBSM) group intervention were evaluated in prostate cancer survivors. A model was tested in which CBSM-related improvements in emotional well-being were attained through changes in men's perceptions of their condition, as conceptualized by information processing explanations of self-regulation theory. The model also tested whether life stress and treatment-related side effects moderated intervention effects.Men treated for localized prostate cancer (n = 257) within the past 18 months were randomized to CBSM or a half-day psycho-educational seminar. At pre-intervention and 12-week follow-up, emotional well-being, illness perceptions, life stress, and sexual and urinary function were assessed using validated questionnaires.After controlling for covariates, CBSM participants showed greater improvements in emotional well-being relative to control participants (β = 0.13, p < 0.05). For men reporting higher stress upon study entry, CBSM-related improvements were partially explained by changes in some, but not all, illness perceptions. Sexual and urinary dysfunction did not influence CBSM-related gains.Prostate cancer perceptions may be an important target for enhancing emotional well-being, particularly for men experiencing general life stress. However, interventions that explicitly target mental representations of cancer may be needed to modify perceptions of the disease.

  View details for DOI 10.1002/pon.2074

  View details for Web of Science ID 000314493700003

  View details for PubMedID 21932396

• Association of stress management skills and perceived stress with physical and emotional well-being among advanced prostrate cancer survivors following androgen deprivation treatment. Journal of clinical psychology in medical settings Penedo, F. J., Benedict, C. n., Zhou, E. S., Rasheed, M. n., Traeger, L. n., Kava, B. R., Soloway, M. n., Czaja, S. n., Antoni, M. H. 2013; 20 (1): 25–32

  Abstract

  Advanced prostate cancer (APC) is associated with disruptions that compromise health related quality of life (HRQOL). Treatment often includes androgendeprivation therapy (ADT), which results in a range of side effects (e.g., fatigue, urinary dysfunction) that further impact HRQOL. Despite these challenges, there are limited evaluations of the impact of stress and stress management skills on HRQOL among APC survivors on ADT. This study evaluated relationships among stress, stress management skills, and HRQOL, and it was hypothesized that better stress management skills would relate to greater physical and emotional well-being by mitigating perceived stress levels. Participants (N = 77) were 69.7 years old (SD = 9.8), 18.6 months post-treatment (SD = 17.5), and ethnically diverse (65 % Non-Hispanic White, 13 % Hispanic, 21 % African-American). Measures included the Measure of Current Status for stress management skills, the Perceived Stress Scale for perceived stress, and the Medical Outcomes Study-Short Form (MOS SF-36; physical functioning and emotional well-being subscales) for HRQOL. Direct effects and mediation models were evaluated to determine the relationships between perceived stress, stress management skills, and HRQOL domains, controlling for relevant covariates. Stress management skills and perceived stress were significantly associated with physical functioning (β = .24, p < .05 and β = -.43, p < .01, respectively) and emotional well-being (β = .35, p < .01 and β = -.64, p < .01, respectively). Regression analyses supported the hypothesis that reduced perceived stress mediated the relationship between stress management skills and both physical functioning and emotional well-being. These results demonstrate that one way stress management skills may impact HRQOL is by lessening ongoing perceptions of stress.

  View details for DOI 10.1007/s10880-012-9308-1

  View details for PubMedID 22739661

• Millon Behavioral Medicine Diagnostic (MBMD) Predicts Health-Related Quality of Life (HrQoL) Over Time Among Men Treated for Localized Prostate Cancer JOURNAL OF PERSONALITY ASSESSMENT Cruess, D. G., Benedict, C., Lattie, E. G., Molton, I., Kinsinger, D., Kava, B., Manoharan, M., Soloway, M., Penedo, F. J. 2013; 95 (1): 54–61

  Abstract

  Prostate cancer treatment presents multiple challenges that can negatively affect health-related quality of life (HrQoL), and that can be further compromised by maladaptive personality styles and psychological adjustment difficulties. This study examined the utility of a comprehensive psychosocial screening tool to identify psychosocial traits that prospectively predict HrQoL status among men treated for localized prostate cancer. The Millon Behavioral Medicine Diagnostic (MBMD) was administered to 66 men (M age = 68 years, 59% White) treated by either radical prostatectomy or radiotherapy along with standard measures of general and prostate-cancer-specific quality of life assessed at a 12-month follow-up. Higher scores on both summary MBMD Management Guides (Adjustment Difficulties and Psych Referral) and higher scores on personality styles characterized by avoidance, dependency, depression, passive aggressiveness, and self-denigration predicted lower HrQoL (β range = -.21 to -.50). Additionally, higher scores on the MBMD Depression, Tension-Anxiety, and Future Pessimism scales predicted lower HrQoL. Finally, higher scores on the MBMD Intervention Fragility and Utilization Excess scale also consistently predicted poorer mental and physical health functioning over time. These results point to the utility of the MBMD to help screen for potential impairments in mental and physical health functioning in men undergoing treatment for prostate cancer.

  View details for DOI 10.1080/00223891.2012.681819

  View details for Web of Science ID 000312699600006

  View details for PubMedID 22571442

  View details for PubMedCentralID PMC4347933

• Multilevel Modeling in Psychosomatic Medicine Research PSYCHOSOMATIC MEDICINE Myers, N. D., Brincks, A. M., Ames, A. J., Prado, G. J., Penedo, F. J., Benedict, C. 2012; 74 (9): 925–36

  Abstract

  The primary purpose of this study is to provide an overview of multilevel modeling for Psychosomatic Medicine readers and contributors. The article begins with a general introduction to multilevel modeling. Multilevel regression modeling at two levels is emphasized because of its prevalence in psychosomatic medicine research. Simulated data sets based on some core ideas from the Familias Unidas effectiveness study are used to illustrate key concepts including communication of model specification, parameter interpretation, sample size and power, and missing data. Input and key output files from Mplus and SAS are provided. A cluster randomized trial with repeated measures (i.e., three-level regression model) is then briefly presented with simulated data based on some core ideas from a cognitive-behavioral stress management intervention in prostate cancer.

  View details for DOI 10.1097/PSY.0b013e3182736971

  View details for Web of Science ID 000311131800009

  View details for PubMedID 23107843

  View details for PubMedCentralID PMC3498540

• PSYCHOSOCIAL CORRELATES OF ANXIETY IN PROSTATE CANCER (PC) SURVIVORS UNDERGOING ACTIVE SURVEILLANCE (AS) Bustillo, N. E., Antoni, M., Lechner, S., Benedict, C., Zhou, E., Rasheed, M., Kava, B., Soloway, M., Penedo, F. SPRINGER. 2012: S281

  View details for Web of Science ID 000302092401181

• SEXUAL DYSFUNCTION AND QUALITY OF LIFE AFTER TREATMENT FOR LOCALIZED PROSTATE CANCER: THE ROLE OF SEXUAL DESIRE AND BOTHER Benedict, C., Llabre, M., Penedo, F. J., Traeger, L., Soloway, M., Kava, B. R., Schneiderman, N., Antoni, M. H. SPRINGER. 2012: S280

  View details for Web of Science ID 000302092401178

• Marital satisfaction of advanced prostate cancer survivors and their spousal caregivers: the dyadic effects of physical and mental health PSYCHO-ONCOLOGY Zhou, E. S., Kim, Y., Rasheed, M., Benedict, C., Bustillo, N. E., Soloway, M., Kava, B. R., Penedo, F. J. 2011; 20 (12): 1353–57

  Abstract

  Coping with the physical and mental side effects of diagnosis and treatment for advanced prostate cancer (APC) is a challenge for both survivors and their spousal caregivers. There is a gap in our current understanding of the dyadic adjustment process on marital satisfaction in this population. The current study sought to: (1) document levels of physical and mental health, and marital satisfaction, and (2) evaluate the relationship between physical and mental health with marital satisfaction in this understudied population.APC survivors who had undergone androgen deprivation therapy within the past year and their spousal caregiver participated in the study (N = 29 dyads). Physical and mental health was assessed using the MOS SF-36 Health Survey and marital satisfaction was evaluated using the Dyadic Adjustment Scale.The Actor-Partner Interdependence Model revealed strong relations between physical and mental health with marital satisfaction for both survivor and caregiver (actor effects). Furthermore, caregiver physical and mental health was related with the survivor's marital satisfaction (partner effect).Levels of mental health and marital satisfaction were comparable to community-based and prostate cancer samples, while physical health was higher. Marital satisfaction between APC survivors and their spousal caregivers may be influenced by both physical and mental health functioning. In particular, APC survivor functioning may affect his marital satisfaction as well as his spousal caregiver's. This has implications for psychosocial interventions for APC dyads. Further evaluation of the complex nature of survivor/caregiver dyadic adjustment in dealing with APC is necessary.

  View details for DOI 10.1002/pon.1855

  View details for Web of Science ID 000298169100013

  View details for PubMedID 20925137

  View details for PubMedCentralID PMC3020233

• EMOTIONAL WELL-BEING IN MEN WITH PROSTATE CANCER: EFFECTS OF A PSYCHOSOCIAL INTERVENTION USING GROWTH MIXTURE MODELING Benedict, C., Penedo, F. J., Traeger, L., Rasheed, M., Zhou, E., Bustillo, N. E., Kava, B., Soloway, M., Llabre, M., Antoni, M. SPRINGER. 2011: S202

  View details for Web of Science ID 000289297701276

• PHYSICAL AND PSYCHOLOGICAL EFFECTS OF AFFECTIONAL EXPRESSION BETWEEN SPOUSES IN ADVANCED PROSTATE CANCER SURVIVORS Zhou, E. S., Benedict, C., Bustillo, N. E., Kava, B., Soloway, M. S., Kim, Y., Czaja, S., Penedo, F. J. SPRINGER. 2011: S61

  View details for Web of Science ID 000289297700237

• Perceived social support as a predictor of disease-specific quality of life in head-and-neck cancer patients. The journal of supportive oncology Penedo, F. J., Traeger, L. n., Benedict, C. n., Thomas, G. n., Dahn, J. R., Krause, M. H., Goodwin, W. J. 2011; 10 (3): 119–23

  Abstract

  Treatment for head-and-neck cancer (HNC) can lead to severe decrements in disease-specific quality of life (DSQOL) due to disfigurement and disability in speech, eating, and/or breathing. Psychosocial factors such as social support may explain individual variance in DSQOL outcomes.The researchers sought to evaluate changes in perceived availability of social support from pretreatment to posttreatment and to determine whether decreases in perceived social support predicted poorer posttreatment DSQOL among HNC patients, controlling for disease- and treatment-related factors.Participants (n = 32) were newly diagnosed with HNC and were awaiting surgery and/or radiation treatment. Measures included the ENRICHD Social Support instrument (ESSI) to assess perceived social support and the Functional Assessment of Cancer Therapy-Head & Neck (FACT-H&N) to assess DSQOL. Paired-samples t-tests and hierarchical regression analyses were conducted to determine relationships between pretreatment and posttreatment perceived social support and DSQOL.Perceived social support decreased significantly from pre- to posttreatment (F[31] = -2.71, P < .01). After adjusting for relevant covariates and pretreatment DSQOL, change in perceived social support remained a significant predictor of posttreatment DSQOL (β = .47, P < .01).This study included a relatively small sample of HNC patients, which limited power to evaluate mechanisms of observed relationships.Increased social isolation may be a risk factor for poorer physical recovery from, or adjustment to, treatment-related side effects. Social support may be an important target for psychosocial interventions for patients who face challenging treatment side effects.

  View details for DOI 10.1016/j.suponc.2011.09.002

  View details for PubMedID 22088826

• TELEPHONE BASED COGNITIVE BEHAVIORAL STRESS MANAGEMENT INTERVENTION IMPROVES COPING, QUALITY OF LIFE AND CORTISOL REGULATION IN MEN UNDERGOING HORMONAL TREATMENT (HT) FOR ADVANCED PROSTATE CANCER (APC) Penedo, F., Benedict, C., Zhou, E., Kava, B., Soloway, M., Antoni, M., Schneiderman, N. SPRINGER. 2010: 23

  View details for Web of Science ID 000280088500048

• TELEPHONE BASED COGNITIVE BEHAVIORAL STRESS MANAGEMENT INTERVENTION IMPROVES COPING, QUALITY OF LIFE AND CORTISOL REGULATION IN MEN UNDERGOING HORMONAL TREATMENT (HT) FOR ADVANCED PROSTATE CANCER (APC) Penedo, F., Benedict, C., Zhou, E., Kava, B., Soloway, M., Antoni, M., Schneiderman, N. SPRINGER. 2010: 23

  View details for Web of Science ID 000520367100048

• EMOTIONAL SUPPORT COPING STRATEGIES MODERATE THE RELATIONSHIP BETWEEN PERCEIVED SOCIAL SUPPORT AND LONG-TERM FUNCTIONAL WELL BEING IN PROSTATE CANCER SURVIVORS Rasheed, M., Zhou, E., Penedo, F., Traeger, L., Benedict, C., Bustillo, N., Antoni, M., Schneiderman, N. SPRINGER. 2010: 169

  View details for Web of Science ID 000275841700656

• PRELIMINARY FINDINGS OF A TELEPHONE BASED COGNITIVE BEHAVIORAL STRESS MANAGEMENT INTERVENTION IN PROSTATE CANCER SURVIVORS UNDERGOING HORMONE THERAPY Penedo, F., Benedict, C., Traeger, L., Rasheed, M., Zhou, E., Bustillo, N., Kava, B., Soloway, M. SPRINGER. 2010: 10

  View details for Web of Science ID 000275841700037

• COPING SKILLS MEDIATE THE EFFECTS OF A TELEPHONE-BASED COGNITIVE BEHAVIORAL STRESS MANAGEMENT INTERVENTION ON URINARY FUNCTION AMONG PC SURVIVORS TREATED WITH HORMONE THERAPY Benedict, C., Penedo, F. J., Traeger, L., Rasheed, M., Zhou, E., Bustillo, N., Kava, B., Soloway, M. SPRINGER. 2010: 56

  View details for Web of Science ID 000275841700216

• Social support mediates the relationship between stress and quality of life in men treated for localized prostate cancer Zhou, E., Penedo, F., Traeger, L., Rasheed, M., Benedict, C., Schneiderman, N., Antoni, M. JOHN WILEY & SONS LTD. 2008: S303

  View details for Web of Science ID 000257874200583

• Social support moderates the relationship between declines in physical well-being and increased mood disturbance in prostate cancer (PC) patients Zhou, E. S., Penedo, F. J., Traeger, L., Rasheed, M., Benedict, C. V., Schneiderman, N., Antoni, M. H. SPRINGER. 2008: S78

  View details for Web of Science ID 000259245500302

• Cognitive adaptation buffers older prostate cancer survivors against age-related declines in subjective well being: A structural equation modeling analysis Traeger, L., Penedo, F., Rasheed, M., Zhou, E., Benedict, C., Antoni, M., Schneiderman, N. SPRINGER. 2008: S17

  View details for Web of Science ID 000259245500065

• Longitudinal effects of social support and adaptive coping on the emotional well-being of survivors of localized prostate cancer. The journal of supportive oncology Zhou, E. S., Penedo, F. J., Bustillo, N. E., Benedict, C. n., Rasheed, M. n., Lechner, S. n., Soloway, M. n., Kava, B. R., Schneiderman, N. n., Antoni, M. H. ; 8 (5): 196–201

  Abstract

  Survivors of prostate cancer experience treatment-related physical side effects that can compromise emotional well-being for years post-treatment. There is limited research investigating how social support and the use of coping may affect the emotional well-being of this population following treatment. The aim of this study was to investigate how social support and coping impact emotional well-being 2 years after treatment in survivors of localized prostate cancer who have received either radical prostatectomy or radiotherapy. Psychosocial and disease-specific measures were administered to an ethnically and demographically diverse sample of 180 men treated for localized prostate cancer at baseline and at 2-year follow-up. Regression analyses demonstrated that higher levels of social support at baseline predicted better emotional well-being 2 years later. Furthermore, higher levels of adaptive coping at baseline partially mediated the relationship between social support and emotional well-being. Supportive relationships may contribute to improved emotional well-being following treatment by facilitating the use of adaptive coping strategies. Attention should be given to strengthening social support networks and educating survivors of prostate cancer on adaptive coping techniques.

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  View details for PubMedCentralID PMC3066633