High Financial Hardship among Patients with Advanced Ovarian Cancer.

Ovarian cancer is considered the most fatal and costly gynecologic cancer. Although personalized therapies have improved ovarian cancer prognosis, they have resulted in increased financial toxicity concerns among this population. This study evaluated financial toxicity in patients with advanced ovarian cancer. Using secondary data from a study of barriers to palliative care, financial toxicity (FT) was measured through the Comprehensive Score for Financial Toxicity scale. Univariate and bivariate analyses were used to assess the relationship between selected demographic (i.e., age, race, ethnicity, education, place of birth, insurance type, yearly household income, employment status) and treatment-specific variables (i.e., years since diagnosis, surgery, chemotherapy, radiation, hormonal and targeted therapy) with clinically relevant financial toxicity. Characteristics were compared using Fisher's exact or chi squared tests. A total of 38 participants with advanced ovarian cancer were included in this study; 24% (n = 9) reported clinically significant FT. Income (p = .001), place of birth (p = .048) and employment status (p = .001) were related to FT. Study findings highlight that advanced ovarian cancer patients experience high FT, particularly those with low income, who are not able to work and were born outside the US. Further research using larger datasets and more representative samples is needed to inform intervention development and implementation.

"It doesn't really apply to what I'm going through": a mixed-methods study of barriers to palliative care among patients with advanced ovarian cancer.

PURPOSE: Palliative care aims to provide symptom relief and general support for patients with serious illness. Despite experiencing significant treatment side effects, specialty palliative care is under-utilized by patients with advanced ovarian cancer. We explored barriers to palliative care in this population. METHODS: We conducted a sequential mixed-methods study. Qualitative: we interviewed patients with advanced ovarian cancer (N = 7). Guided by the Social Ecological Model (SEM), interviews assessed intrapersonal, interpersonal, organizational, and policy-level barriers to receipt of specialty palliative care. Interviews were audio-recorded, transcribed, and analyzed with directed content analysis. Quantitative: patients with advanced ovarian cancer (N = 38) completed self-report surveys assessing knowledge about, attitudes towards, and prior experiences with specialty palliative care. Descriptive statistics were used to characterize survey responses. RESULTS: Qualitative analysis identified barriers to specialty palliative care at each SEM level. Intrapersonal factors (e.g., knowledge, attitudes) were most frequently discussed. Other common barriers included insurance coverage and distance/travel time. Survey responses indicated most participants were aware of palliative care (74%) but had mixed attitudes towards palliative care and did not feel they needed for palliative care. No survey respondents had received a physician recommendation for palliative care, and a sizable minority (29%) thought palliative care referral should only take place when patients have no remaining treatment options. CONCLUSION: Among patients with advanced ovarian cancer, barriers to specialty palliative care exist at multiple levels. Our results underscore the potential value of a multilevel intervention to support receipt of palliative care in this population.

Evolution and growth of the ECHO (Enriching Communication skills for Health professionals in Oncofertility) program: a 5-year study in the training of oncofertility professionals.

PURPOSE: AYAs with cancer have unique psychosocial needs, with reproductive health being a primary concern. The ECHO training program provides reproductive health communication training to individuals providing care for AYAs with cancer. The purpose of this project is to describe the growth of ECHO and evaluate changes in learner engagement over a 5-year period. METHODS: ECHO is an 8-week online training program offered annually, with the program including learning modules, discussion topics and reflections, and synchronous discussions. Reflection quality scores and number of words were compared between the 5 cohorts using ANOVA with a p < .05 level of significance. Descriptive statistics summarized module topics, reflections, and synchronous discussions. RESULTS: The average number of reflections per unique learner increased each year (1.4 in cohort 1 vs 4.1 in cohort 5), as did average length and quality of reflections (72.1 words in cohort 1 vs 203.4 words in cohort 5, p < .0001; score of 1.21 in cohort 1 vs 4.46 in cohort 5, p < .0001). The percentage of learners in attendance at synchronous discussions increased between cohorts 4 and 5 (4.8% of learners in cohort 4 vs 18.8% of learners cohort 5). CONCLUSIONS: The ECHO program has seen significant growth and improvement in learner engagement over a 5-year period. This is particularly important given that student learning outcomes in online courses can be predicted by the level of engagement with online content. IMPLICATIONS FOR CANCER SURVIVORS: As fertility and reproductive health remain a top life goal and discussion priority for AYAs surviving cancer, increasing clinical competencies of AHPs in oncofertility is essential.

"No one size fits all" A Multi-Method Survey of Oncology Allied Health Professionals Experiences with Lesbian, Gay, Bisexual, Transgender/Queer Questioning Adolescent, and Young Adult Patients with Cancer and Reproductive and Sexual Health".

Objectives: To assess training needs for providers who care for adolescent and young adult (AYA) lesbian, gay, bisexual, transgender/queer questioning (LGBTQ) cancer patients, we conducted a mixed-method survey. During their cancer care experience, AYA cancer patients experience physical, psychosocial, and reproductive health challenges. In addition to these challenges, AYA LGBTQ individuals are a diverse and medically underserved population who experience unique challenges and disparities in medical care. Methods: Health care providers (n = 351) who participated in our reproductive health in cancer training program completed a survey with 28 quantitative items and 4 open-ended items assessing knowledge, confidence discussing reproductive health, and confidence in knowledge specific to reproductive needs and general health needs among AYA LGBTQ patients. Results: Confidence discussing and confidence in knowledge of reproductive and general health needs are lower regarding transgender and nonbinary patients. Nearly half of providers (45%) demonstrated low knowledge, while 38% and 17% demonstrated moderate and high knowledge, respectively. Open comments indicated providers desired more training around the needs of Trans and nonbinary patients, and creating welcoming environments. Conclusions: The majority of our participants demonstrate low or moderate knowledge regarding factors that can influence AYA LGBTQ patient care, suggesting that this is a key area for improvement. Furthermore, improving provider knowledge may subsequently improve confidence in general and reproductive needs of LGBTQ patients, resulting in improved patient-centered care. Improving provider knowledge and confidence may then ultimately help reduce disparities in cancer care among this patient population.

Suffering in silence: Graduate student infertility.

While fertility is a widely studied public health issue, infertility among college students is rarely examined. Research on fertility among college students focuses primarily on pregnancy prevention. Often constructed as hyper-fertile, cohorts of women in graduate studies are struggling with fertility issues and left to suffer in silence. Objective: This study aimed to identify barriers to access and gaps in available reproductive services to college attending women. Methods: This multi-method, exploratory study employed online surveys (n = 37), semi-structured interviews (n = 5), and an assessment of fertility-related school health services available at universities nationally to understand issues related to infertility, including experience with and access to services. Results: A near absence of fertility-related care on college campuses emerged nationally, while a clear need among female graduate students emerged locally. Perceptions of poor treatment and dismissal of concerns were prominent issues. Conclusions: Findings suggest the need for self-advocacy, while highlighting the potential role of university and community supports for women suffering from the dual burden of being a student while struggling with fertility related issues.

The LOvE ECHO Training: Developing a Web-Based LGBTQ Cultural Competency Training Module for Oncology Allied Health Professionals.

Purpose: This article describes the development of the LGBTQ Oncofertility Education (LOvE-ECHO). The Enriching Communication skills for Health professionals in Oncofertility (ECHO) team created this new education module in response to the needs of oncology allied health professionals to provide inclusive and affirming care to lesbian, gay, bisexual, transgender, and queer (LGBTQ) AYA patients with cancer. The new module is part of the ECHO, a web-based educational training program for oncology allied health professionals to improve communication with AYA about reproductive health. Methods: The development of LOvE-ECHO includes five phases-learner needs assessment, content development and revision, piloting, and finalizing. Results from a survey of past ECHO learners and a comprehensive literature review provided the basis of need for this module and identified the most prominent gaps in knowledge and training. Content development and revision were iterative, including input, feedback, and voices from LQBTA youth and survivors, researchers, reproductive health experts, oncology clinicians, and web developer. Results: The complete LOvE-ECHO module consists of both didactic and interactive lessons. A glossary of terms and narrated PowerPoint establishes a knowledge base and shared vocabulary. Three interactive cases and a plan for action provide learners opportunities to test their new knowledge and transfer it to their practice. Conclusion: The module has received positive feedback to date. It is currently being piloted with new learners who complete a pre-test and post-test, as well as a feedback survey. Analysis of these results will inform revisions to the module.