BackgroundLess than 5% of breast cancer patients participate in clinical trials. To increase patients’ awareness and access to trials, we created BreastCancerTrials.org, a clinical trial matching website. BreastCancerTrials.org matched patients to trials based on their self-reported breast cancer history. It also provided a messaging platform through which patients could self-refer themselves to participating research sites.ObjectiveTo assess adoption by research sites, acceptability to patients, and patients’ accuracy in providing information to BreastCancerTrials.org.MethodsWe approached 13 research sites in Northern California to list their trials on BreastCancerTrials.org. For adoption, we examined the willingness of contacted research sites to collaborate with BreastCancerTrials.org. For acceptability, we analyzed usage statistics of visitors who completed the BreastCancerTrials.org health history questionnaire in the first 14 months after launch and surveyed users who visited the website during its first year about their experience. For accuracy, we compared the self-reported health history of 20 patients against their medical records. The health history questionnaire was divided into four sections: About Me, personal information including date of birth and sex; My Health as of Today, current status including cancer stage, menopausal status, and sites with evidence of disease; My Cancer, diagnostic information such as hormone and human epidermal growth factor receptor 2 status; and My Treatment, an itemized record of past treatment including responses to therapy.ResultsA total of 12 sites contributed 55 trials. Regarding acceptability, 733 visitors registered on the website; 428 reported their health history; and 407 matched to at least one trial. Of 375 patients who were sent a survey, 75 responded (20%); 23 of the 75 (31%) contacted a research site, 12 of the 23 (52%) were eligible for a trial, and 5 of the 12 (42%) reported enrolling. As for accuracy, 20 clinic visitors reported 1456 health history items, 1324 of which matched their clinic record (90.93%).ConclusionsBreastCancerTrials.org was adopted by research sites. Patients found it acceptable and were able to provide accurate information for trial matching. Based on our findings, we launched an upgraded version of BreastCancerTrials.org as a national service in October 2008.
Background:Breast cancer is the most commonly diagnosed cancer among adolescent and young (AYA) adult females, ages 15-39. Approximately 14% of all AYA cancers diagnosed in females are breast cancer. AYAs represent 7% of all female breast cancer diagnoses. AYAs diagnosed with breast cancer have larger proportions of cancers with lower estrogen receptor positivity and over expression of HER2, triple negative subtypes, and cancers associated with familial history. These factors suggest the need for increased surveillance of young women diagnosed with breast cancer and strong consideration for their enrollment into clinical trials. Objective: To analyze geographic and socioeconomic factors that may increase risk and disparities in access to clinical trials for Texas AYA breast cancer survivors. Research Questions; 1) What are the factors, including access to clinical trials, that affect Texas AYA breast cancer patients being diagnosed at later versus earlier stages? 2) What are the associations between various demographic and diagnostic risk factors and AYAs breast cancer survivors’ distance to clinical trials? Data Sources, Population and Methods: Data sources include SEER 18 and Texas Limited Use data bases for incidence analyses. Data on breast cancer clinical trials was provided by www.BreastCancerTrials.org. Texas AYA breast cancer population data for 4153 women diagnosed from 2005 to 2009, was provided by the Texas Cancer Registry under IRB protocol 13-022. Methods for this study included use of SEER Stat for incidence analysis, ESRI ArcGIS 10.1 mapping and ESRI GIS Network Analysis tools to determine individual patient locations and distance to trials. Stata statistical software (12.1) was used to for bivariate and logistic regression modeling and analyses. Selected Results: 1) In a comparison of U.S. SEER 18 and Texas Limited Use data, for the overall female AYA breast cancer populations and for nearly all of the racial and ethnic subgroups, Texas' age adjusted incidence rates for this age group (15-39) are higher than the U.S. incidence rates. 2) With insured patients as the reference, uninsured self pay patients were 70% (p-value< 0.000, CI 1.31, 2.20) more likely to be diagnosed at later stages; 3) Being of Hispanic/Latina ethnicity was associated with at 36% greater risk of late stage diagnosis (p-value <0.000, CI 1.16,1.59) 4) Black African American AYAs were 31% more likely to be diagnosed at a later stage (p-value 0.004, CI 1.08,1.58) 5) Using <45 miles distance to clinical trials as a reference, AYA breast cancer patients living 45-100 miles from an appropriate trial were 102% more likely to be diagnosed at later stages (p-value< 0.000, CI 1.65,2.48) 6) AYA patients living furthest from trials, over 200 miles, were 49% more likely to be diagnosed at later versus earlier stages of breast cancer (p-value 0.020, CI 1.06, 2.09). Discussion: This is the first study to consider geographic, demographic and diagnostic factors, including distance to appropriate trials, in exploring early versus late staging of breast cancer among AYAs. The findings and discussion of results have both practice and policy implications related to access to care and clinical trials for AYA breast cancer survivors. Citation Format: Deborah Vollmer Dahlke, Ellyn Cohen. Adolescent and young adult breast cancer in Texas: Risk factors for delayed diagnosis, including distance to clinical trials [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P5-12-06.
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