Leveraging National Cancer Institute Programmatic Collaboration for Uterine Cervix Cancer Patient Accrual in Puerto Rico

Women in the U.S. Commonwealth of Puerto Rico (PR) have a higher age-adjusted incidence rate for uterine cervix cancer than the U.S. mainland as well as substantial access and economic barriers to cancer care. The National Cancer Institute (NCI) funds a Minority/Underserved NCI Community Oncology Research Program in PR (PRNCORP) as part of a national network of community-based health-care systems to conduct multisite cancer clinical trials in diverse populations. Participation by the PRNCORP in NCI’s uterine cervix cancer clinical trials, however, has remained limited. This study reports on the findings of an NCI site visit in PR to assess barriers impeding site activation and accrual to its sponsored gynecologic cancer clinical trials. Qualitative, semi-structured individual, and group interviews were conducted at six PRNCORP-affiliated locations to ascertain: long-term trial accrual objectives; key stakeholders in PR that address uterine cervix cancer care; key challenges or barriers to activating and to enrolling patients in NCI uterine cervix cancer treatment trials; and resources, policies, or procedures in place or needed on the island to support NCI-sponsored clinical trials. An NCI-sponsored uterine cervix cancer radiation–chemotherapy intervention clinical trial (NCT02466971), already activated on the island, served as a test case to identify relevant patient accrual and site barriers. The site visit identified five key barriers to accrual: (1) lack of central personnel to coordinate referrals for treatment plans, medical tests, and medical imaging across the island’s clinical trial access points; (2) patient insurance coverage; (3) lack of a coordinated brachytherapy schedule at San Juan-centric service providers; (4) limited credentialed radiotherapy machines island-wide; and (5) too few radiology medical physicists tasked to credential trial-specified positron emission tomography scanners island-wide. PR offers a unique opportunity to study overarching and tactical strategies for improving accrual to NCI-sponsored gynecologic cancer clinical trials. Interview findings support adding and re-tasking personnel for coordinated trial-eligible patient referral, accrual, and treatment

User-Centered Research on Breast Cancer Patient Needs and Preferences of an Internet-Based Clinical Trial Matching System

Reviewer: Embi, PeterReviewer: Monaco, Valerie[This item is a preserved copy and is not necessarily the most recent version. To view the current item, visit http://www.jmir.org/2007/2/e13/ ] Background: Internet-based clinical trial matching systems have the potential to streamline the search process for women with breast cancer seeking alternative treatments. A prototype system was developed to leverage the capabilities of a personal health record system for the purpose of identifying clinical trials. Objective: This study examines how breast cancer patients perceive and interact with a preliminary version of an Internet-based clinical trial matching system, while taking into account the demands of diagnosis and treatment decision making. Methods: Breast cancer patients participated in small group discussions and interacted with the prototype website in a two-phase qualitative research process. The first phase explored the experience of breast cancer patients (n = 8) with treatment decision making, initial responses to the idea of Internet-based clinical trial matching systems, and reactions to the prototype site. In the second phase, a different set of breast cancer patients (n = 7) reviewed revised website content and presentation and participated in a usability test in which they registered on the system and completed a personal health record to set up the matching process. Results: Participants were initially skeptical of the prototype system because it emphasized registration, had a complicated registration process, and asked for complex medical information. Changing content and attending to usability guidelines improved the experience for women in the second phase of the research and enabled the identification of functionality and content issues, such as lack of clear information and directions on how to use the system. Conclusions: This study showed that women felt favorably about the idea of using the Internet to search for clinical trials but that such a system needed to meet their expectations for credibility and privacy and be sensitive to their situation. Developers can meet these expectations by conforming to established usability guidelines and testing improvements with breast cancer patients. Future research is needed to verify these findings and to continue to improve systems of this nature