Ovarian Cancer National Alliance Research Articles

Association of plasma branched-chain amino acid with multiple cancers: A mendelian randomization analysis

Studies have suggested a possible relevance between branched-chain amino acid (BCAA) catabolic enzymes and cancers. However, few studies have explored the variation in circulating concentrations of BCAAs. Our study used bi-directional, two-sample Mendelian randomization (MR) analysis for predicting the causality between the BCAA levels and 9 types of cancers. The largest genome-wide association studies (GWAS) provided data for total BCAAs, valine, leucine, and isoleucine from the UK Biobank. Data on multiple cancer endpoints were collected from various sources, such as the International Lung Cancer Consortium (ILCCO), the Pancreatic Cancer Cohort Consortium 1 (PanScan1), the Breast Cancer Association Consortium (BCAC), the FinnGen Biobank, and the Ovarian Cancer National Alliance (OCAC). The mainly analysis method was the inverse-variance-weighted (IVW). For assessing horizontal pleiotropy, the researchers performed MR-Egger regression and MR-PRESSO global test. Finally, the Cochran's Q test served for evaluating the heterogeneity. Circulating total BCAAs levels (OR 1.708, 95%CI 1.168, 2.498; p=0.006), valine levels (OR 1.747, 95%CI 1.217, 2.402; p<0.001), leucine levels (OR 1.923, 95%CI 1.279, 2.890; p=0.002) as well as isoleucine levels (OR 1.898, 95%CI 1.164, 3.094; p=0.010) positively correlated with the squamous cell lung cancer risk. Nevertheless, no compelling evidence was found to support a causal link between BCAAs and any other examined cancers. Increased circulating total-BCAAs levels, leucine levels, isoleucine levels and valine levels had higher hazard of squamous cell lung cancer. No such associations were found for BCAAs with other cancers.

Endpoints in clinical trials: What do patients consider important? A survey of the Ovarian Cancer National Alliance

In order to understand the patient's perspective in regards to meaningful surrogate clinical trial endpoints and the impact of treatment-related toxicity, and quality of life, we surveyed women with gynecological cancers to ascertain their preferences. A 28-question anonymous online survey was posted on the OCNA website (www.ovariancancer.org). Survey questions included demographic factors, tumor data, and patients' preference regarding side effects and therapy endpoints. Data was analyzed for frequency and percentage of each response. Student t-test, Fisher's exact test and Wilcoxon rank sums were preformed. There were 1413 survey responses. Participants reported that for a new agent to be meaningful, the minimum extension of progression-free survival (PFS) and overall survival (OS) should be five or more months, 77% and 85% of the time, respectively. Most subjects (55%, n=612) were interested in an agent that would keep tumor growth relatively static without change in OS. Addressing the impact of adverse aspects from a hypothetical new agent as a function of response, there was significant migration (p<0.0001) to acceptance of greater toxicity and cost under the scenario of a 5-6months OS gain, despite three-fold higher neurotoxicity, as compared to a PFS gain of 3-4months/no OS gain without toxicity. Response patterns weren't altered by recurrence status. Herein, we show that magnitude of outcome is a desired effect, even given the prospect of significant toxicity and cost. However, these preferences appear to differ between those with primary and recurrent disease.

Immune checkpoint inhibition: therapeutic implications in epithelial ovarian cancer.

Ovarian cancer accounts for more deaths than any other gynecologic malignancy. According to the Ovarian Cancer National Alliance, overall mortality rates due to ovarian cancer have not significantly improved in 40 years, a statistic that highlights the need for innovative treatment strategies. Immune checkpoint inhibitors are part of an emerging immunotherapeutic model that seeks to "inhibit the inhibitors" of adequate cancer immunosurveillance. Immune checkpoints encompass a variety of inhibitory pathways that downregulate an immune response, which allows them to assume an important physiologic role in maintaining homeostasis. While cancer cells are adept at utilizing these pathways to their advantage, basic scientists, translational researchers, and clinical trialists are making great strides in this area of investigation. This review article will focus on the development of anti-CTLA-4 and anti-PD1 monoclonal antibodies, their current role in the treatment of advanced stage EOC, and recently published patents that incorporate the use of immune checkpoint inhibition in the treatment of cancer.

A qualitative study of ovarian cancer survivors' perceptions of endpoints and goals of care

ObjectivesA survey of the Ovarian Cancer National Alliance revealed a communication gap between physicians and survivors. This qualitative study explored the space between perceptions in hopes of better defining treatment endpoints meaningful to treating physicians and their patients. MethodsA focus group of ovarian cancer survivors (n=22) was assembled via the survivor support network SHARE. A physician-guided session explored expectations of treatment, perceived outcomes, toxicity thresholds and decision making. The session was recorded, transcribed and coded. Common themes were identified and used to perform intra-case analysis by two independent reviewers. ResultsThe main themes identified were barriers to communication, importance of frequent communication between patient and physician regarding goals, and expectations of treatment changing with position along the treatment continuum. One hundred percent of participants identified communication with their physician as an essential element in determining treatment course. However, only 14% reported having a discussion about goals, values and perceptions with their physician preceding treatment decisions. Participants reported that the terms progression free and overall survival held minimal significance for them and instead they preferred an individualized approach to care focusing on quality of life. Many women underreported side effects with reasons ranging from fear of dose reductions and additional tests to forgetting about symptoms due to anxiety. ConclusionsAn objective measure of treatment success meaningful to survivors, physicians and regulators is, at present, elusive and may not exist. Ideally, future trial design would place equal weight on quantitative and qualitative measures and include information about goals of treatment.

An Investigation of the Informational Needs of Ovarian Cancer Patients and Their Supporters

Numerous Internet-based peer support groups exist to support the informational needs of patients with chronic illnesses. By analyzing the discussions available in the forum of a major ovarian cancer support group, the Ovarian Cancer National Alliance (OCNA), this study investigates the type of information that newly diagnosed ovarian cancer patients and their supporters seek. Using content analysis, 206 publicly available discussion posts exchanged on OCNA were analyzed by two researchers. Each discussion point was classified into one of the three broad themes that emerged: ovarian cancer-specific, treatment-related, or coping information. The discussion points were further analyzed using a multinomial logit model to predict the type of the desired information based on the role of the person looking for the information, the disease phase in which the information was sought, the emotional status of the information seeker, and the stage of the cancer. The results suggest that there is a wide variety of information seekers with divergent goals. Treatment-related material was the most sought-after information by patients, while coping information was most sought by supporters. When forum posts were negative in tone, the information seekers were more likely to be looking for ovarian cancer-specific information than either treatment-related information or coping information. This suggests that the presentation of ovarian cancer-specific information should be particularly sensitive to the negative emotional state of the people seeking this information.

Endpoints in clinical trials: What do our patients consider important? A survey of the Ovarian Cancer National Alliance (OCNA)

Objective: Recent editorials in response to the magnitude of risk: benefit from published phase III clinical trials have claimed that incremental benefits seen in intermediate endpoints such as progression-free survival (PFS) are insufficient to warrant drug approval, particularly in the absence of overall survival (OS) gains. We sought to characterize measures of efficacy and toxicity frequently collected in these trials among patient survivors with ovarian cancer to provide the patient’s perspective to the debate.

Abstract ADV15: Survivors teaching students: Saving women's lives program.

Abstract Since 2002, the Ovarian Cancer National Alliance has been working to save women's lives by helping health care practitioners learn to diagnose ovarian cancer earlier through the Survivors Teaching Students: Saving Women's Lives® (STS) Program. The program brings ovarian cancer survivors into the classrooms of medical schools, nursing schools, nurse practitioners and physician assistant programs to inform students about real women's experiences with the disease. Each woman who presents has a unique story. These women_many diagnosed at an advanced stage_are in a distinct position to help students become more sensitive to the disease's symptoms and risk factors that, in turn, can result in an earlier diagnosis. The STS program is currently presented in 74 medical schools nationwide, 3 nurse practitioner programs, 12 physician assistant programs, 42 nursing schools and 13 other allied health professional schools across the country. Awareness of symptoms and risk factors is one of the only tools available to women and their physicians which may lead to earlier diagnosis. Evaluation of the Survivors Teaching Students program has revealed that the students who have attended an STS presentation have an increased awareness of the symptoms and risk factors of ovarian cancer and when asked about the program after they entered medical practice, the respondents remembered the information they had learned in these presentations and felt it had impacted the ways in which they treated women presenting with these symptoms. Citation Format: Susan L. Leighton. Survivors teaching students: Saving women's lives program. [abstract]. In: Proceedings of the 104th Annual Meeting of the American Association for Cancer Research; 2013 Apr 6-10; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2013;73(8 Suppl):Abstract nr ADV15. doi:10.1158/1538-7445.AM2013-ADV15

Assessing Baccalaureate Nursing Students' Knowledge of Ovarian Cancer

NURSES ARE IN A PRIME POSITION TO EDUCATE CLIENTS ABOUT HEALTH PROMOTION, SPECIFICALLY, CANCER RISK, PREVENTION, SYMPTOMS, AND EARLY DETECTION. However, cancer education in undergraduate nursing programs is often spread out among many courses and focused on the most common cancers (breast, lung, colon, and prostate). Cancers that affect a small number of individuals, such as ovarian cancer, may be overlooked.While early symptoms of ovarian cancer are recognized (Gynecologic Cancer Foundation, 2007), few health care professionals and lay people are aware of these symptoms (Lockwood- Rayermann, Donovan, Rambo, & Kuo, 2009). Eighty-five percent of women are diagnosed in advanced stages of the disease, contributing to its ranking as the fourth leading cause of cancer deaths for women (American Cancer Society, 2012). This article reports on the outcomes of a focused ovarian cancer awareness program for nursing students.Literature Review Studies of nursing students' knowledge of cancer are descriptive but show a knowledge deficit of early symptoms, cancer-related side effects and management (Frerichs & Varricchio, 1988), and pain management (Sheehan, Webb, Bower, & Einsporn, 1992). Recent studies have included educational interventions to improve knowledge about cancer pain (Wilkes, Lasch, Lee, Greenhill, & Chiri, 2003), skin cancer prevention (Siegel, 2010), and ovarian cancer (Fitch, McAndrew, Turner, Ross, & Pison, 2011). While all of these studies demonstrated that cancer knowledge can be improved with education, Fitch and colleagues reported that deficits still remained regarding symptoms and screening tests for ovarian cancer. Researchers did not examine long-term knowledge retention.Nurses Educational Initiative The Nurses Educational Initiative (NEI) is an educational program that expands on the Ovarian Cancer National Alliance's Survivors Teaching Students Program (2012). The NEI is a two-part interactive program involving faculty, students, and cancer survivors. Part 1 consists of an evidence-based lecture regarding ovarian cancer incidence, risk factors, screening guidelines, and symptoms; particular emphasis is placed on a Pap test not being an effective screening tool for ovarian cancer. To enhance the impact of the program, Part 2 consists of a presentation by one or more women who discuss their personal experiences with ovarian cancer. A question and answer period follows.Method A descriptive, one-gro up pre- and posttest design was used to examine the effectiveness of the NEI on baccalaureate nursing students' knowledge about ovarian cancer. Institutional review board approval was obtained prior to the start of the study. Students (N = 220) at a large state university in Florida participated at all three data collection time points. Data concerning knowledge were collected immediately prior to (Time 1) and immediately after the NEI (Time 2). Long-term knowledge retention was collected before graduation, 18 months after the NEI (Time 3). An investigator-developed instrument that directly reflected the evidence- based content presented during the NEI was used.Data were analyzed using descriptive statistics, frequencies, and paired t-tests using SPSS® version 18. Bonferroni's corrections were used, bringing the significance level to 0.017 (.05/3). Knowledge was measured by summing the number of correct answers on each survey. Answers were coded as: 0 = no, 1 = yes, with yes indicating the correct answer. The highest possible scores for each category are: total knowledge (19), incidence (1), risk (6), screening (2), symptoms (9), and most effective surgeon (1).Results Changes at all three time points were noted for overall knowledge and knowledge of risk, screening, and symptoms. For overall knowledge, mean baseline scores increased from 11.8 to 15.03 points at Time 2, but decreased to 12.74 points at Time 3. Mean risk scores were: baseline, 4.13 points; Time 2, 5. …

Abstract LB-45: Real people- real stories: survivors teaching students

Abstract The Ovarian Cancer Alliance of Oregon and SW Washington is a proud partner member of the Ovarian Cancer National Alliance (OCNA). We actively bring the OCNA's program Survivors Teaching Students: Saving Women's Lives to the local level. Since 2002, the Ovarian Cancer National Alliance has been working to save the lives of women by helping healthcare practitioners learn to diagnose ovarian cancer earlier. Through OCNA's innovative educational program future healthcare professionals-physicians, nurse practitioners, nurses and physician assistants increase their understanding of ovarian cancer symptoms and risk factors so that they will be able to diagnose the disease when it is in its earlier, most treatable stages. Survivors Teaching Students brings ovarian cancer survivors into health professionals’ classrooms to share their stories and key information about the disease. At the local level, we also speak to pharmacy and naturopath students. Based on students’ evaluations we are accomplishing our goal of increasing awareness of this deadly cancer. Our local organization's mission is to promote awareness of ovarian cancer and to provide education to women and the health care community; to offer support to all ovarian cancer survivors by providing opportunities for networking, education and community outreach; and to advocate for public policy and funding for ovarian cancer research. In addition to the Survivors Teaching Students program, we are active in community health fairs/events, and have a presence in local Gynecological Cancer Support Groups. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 103rd Annual Meeting of the American Association for Cancer Research; 2012 Mar 31-Apr 4; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2012;72(8 Suppl):Abstract nr LB-45. doi:1538-7445.AM2012-LB-45

Abstract LB-59: Progressing Forward in Timely Fashion

Abstract Peg Ford, Chair, and Kathy Hagan, Co-Chair, caregiver who lost her mother to ovarian cancer, formalized Peg's advocacy efforts in launching the Ovarian Cancer Advocacy Alliance (OCAA) of San Diego in May 2011. OCAA's Mission was formulated in three aspects of Advocacy: 1) Affect change in the way medical doctors approach diagnosis and treatment of ovarian cancer by education of the medical community, patient organizations, and the community at large to achieve early diagnosis and improved treatment options; 2) advance ovarian cancer research toward early diagnosis and improved quality of care; and 3) Address legislative issues that affect ovarian cancer care and research. From becoming a proud partner of the Ovarian Cancer National Alliance (OCNA); successfully expanding OCNA's “Survivors Teaching Students: Saving Women's Lives®” Program to Schools of Nursing; publishing articles; and actively participation in legislative actions, 2011 was a banner year. The poster reflects the continued outstanding success of the STS Program, and Peg Ford, OCAA Chair's, commitment to pursue her initiative to blossom into a voice as a Research Advocate for the ovarian cancer community on a local, state, national and international level, as a guest speaker, facilitator, or writer for community outreach efforts. Progressing forward in a timely fashion will continue to set the initiatives to strengthen Ovarian Cancer Advocacy Alliance's (OCAA) vision of patient advocates as the bridge between the patient community and the scientific/medical world, working hand-in-hand to advance research and impact changes to better serve both communities. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 103rd Annual Meeting of the American Association for Cancer Research; 2012 Mar 31-Apr 4; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2012;72(8 Suppl):Abstract nr LB-59. doi:1538-7445.AM2012-LB-59

Abstract LB-41: Raising awareness of ovarian cancer: a rare disease with no screening test

Abstract Approximately 21,000 women are diagnosed with ovarian cancer annually. Although a relatively rare disease, it is extremely difficult to detect as there is no screening test available. There are symptoms even in early stages which are dismissed by patients as not being serious and often initially being attributed to benign causes by health professional not aware of the symptom complex associated with ovarian cancer. Awareness is the only tool currently available to help improve detection. Lilies of the Valley, an ovarian cancer support and awareness group in Huntsville, Alabama, has as its mission to educate, raise awareness and disseminate information about ovarian cancer to ovarian cancer patients and survivors, the general public and the medical community in the Tennessee Valley region. The Ovarian Cancer National Alliance has its mission to remain objective in providing information to the ovarian cancer community; it does not endorse any particular treatment, therapy, clinical trial or product. These two organizations raise awareness through two very unique and innovative programs, TEAL Talks and the Survivors Teaching Students: Saving Women's Lives. This poster examines the roles of these organizations and these programs in improving early detection of ovarian cancer through patient and health professional awareness. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 103rd Annual Meeting of the American Association for Cancer Research; 2012 Mar 31-Apr 4; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2012;72(8 Suppl):Abstract nr LB-41. doi:1538-7445.AM2012-LB-41

Abstract LB-67: From Patient to Advocate

Abstract Peg Ford is a living example of two causes that have become her passion: early detection of ovarian cancer and timely referral of patients into the care of a gynecologic oncologist. Before Ms. Ford's experience with ovarian cancer, she had mostly chosen alternative healing methods. Impressed and appreciative of the diversity of care the western medical system now offers, she was directed toward advocacy to spread awareness of the benefits of interweaving both types of care. She chose to pursue advocacy for many reasons, but most importantly to put ovarian cancer at the forefront of medical doctors' minds. Early diagnosis is crucial to saving more women's lives. The overall survival rate for ovarian cancer for five years is only 45 percent, but when the cancer is diagnosed early, survival rates greatly improve to over 90 percent. Until there is a screening test for ovarian cancer, women must rely on the awareness of medical doctors in all fields. She strives to ensure that all women have a great understanding of their bodies and act as their own advocates to get care in a timely fashion. Ms. Ford's poster outlines her journey to becoming an advocate. After discovering an innovative educational program, “Survivors Teaching Students: Saving Women's Lives,” created by the Ovarian Cancer National Alliance, she successfully launched the program at UCSD School of Medicine for Third Year Medical Students. The course brings ovarian cancer survivors right into the classroom to share their stories with the goal of increasing awareness of the symptoms and risk factors needed for the early detection of ovarian cancer. Her poster reflects the outstanding success of the program in two short years. Seeing the need and opportunity to reach practicing medical doctors, she teamed up with the esteemed Dr. Afshin Bahador, Gynecologic Oncologist, to participate in his grand rounds at major hospital campuses. Her commitment to tell her story whenever the opportunity presents itself: as a guest speaker, facilitator, or writer for community outreach efforts, blossoms into a voice for the ovarian cancer community on a local, state, national, and international level. Her poster outlines her diverse advocacy efforts from DoD Funding, a Research Advocacy Network's 2010 Scholar at ASCO, as a member of the Core Planning Group of COCAP, as a consumer reviewer for The Cochrane Collaboration, and as an attendee of the Salzburg Global Seminar in Salzburg, Austria. With her appreciation for the advances in research, her poster highlight's patient advocates' roles as the bridge between the scientific/medical world to the patient community and to work hand-in-hand to advance research and impact change to better serve both communities. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 102nd Annual Meeting of the American Association for Cancer Research; 2011 Apr 2-6; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2011;71(8 Suppl):Abstract nr LB-67. doi:10.1158/1538-7445.AM2011-LB-67

Panel at Ovarian Cancer National Alliance Annual Conference: Fix Health Care Now

Panel at Ovarian Cancer National Alliance Annual Conference: Fix Health Care Now

Ovarian Cancer National Alliance: Supporting Action, Education, and Awareness.

Ovarian Cancer National Alliance: Supporting Action, Education, and Awareness.

Prediction

(1) At Ovarian Cancer National Alliance Conference, Prediction is for Major Changes in Treatment Likely in Next 5 Years; (2) Study Links Obesity to Survival in Epithelial Ovarian Cancer