Need: Childhood cancer survivors (CCS) are at risk for cancer therapy-related late effects. Evidence-based long-term follow-up guidelines for CCS are readily available and maintained by the Children’s Oncology Group (COG). However, dissemination and uptake of these guidelines is suboptimal, especially among CCS not routinely followed in a Long Term Survivor (LTS) Clinic. Up to 50% of CCS have little to no recollection of their cancer diagnosis, let alone the treatments they received as children, information that is required to inform exposure-based risks and screening. Beyond these barriers and their risk for late effects, CCS are more likely to live in financial hardship and be under or uni...
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Need: Childhood cancer survivors (CCS) are at risk for cancer therapy-related late effects. Evidence-based long-term follow-up guidelines for CCS are readily available and maintained by the Children’s Oncology Group (COG). However, dissemination and uptake of these guidelines is suboptimal, especially among CCS not routinely followed in a Long Term Survivor (LTS) Clinic. Up to 50% of CCS have little to no recollection of their cancer diagnosis, let alone the treatments they received as children, information that is required to inform exposure-based risks and screening. Beyond these barriers and their risk for late effects, CCS are more likely to live in financial hardship and be under or uninsured than their age-based peers. Financial hardship affects one third of cancer survivors living in the U.S., particularly those living in medically-underserved areas such as Hidalgo, Cameron, and Starr Counties, which lie along the U.S.-Mexico border in the Rio Grande Valley. One third of the ~1,300,000 residents of these counties (89-96% Latino) live below the federal poverty line. Due to these barriers further limiting access to care, CCS living in these counties are at exceptionally high risk for loss to follow-up after completing cancer treatment. Overall Project Strategy: We developed Passport for Care (PFC) to address this important public health problem. PFC is a web-based decision support tool developed in collaboration with COG that generates personalized, evidence-based, and exposure-informed survivorship care plans (SCPs). PFC is a tertiary prevention strategy that improves survivorship care and health in survivorship by promoting early detection and management of cancer therapy-related outcomes, including second cancers. The PFC has been adopted by hospitals and clinics worldwide, enrolling over 45,000 CCS to date. The PFC Survivor Website (PFC-SW) provides CCS with access to their personalized SCP in lay language, and is available in Spanish. Previous CPRIT funding supported the initial deployment of the PFC to 17 Texas clinics (PP100090), the development and launch of the PFC-SW and full Spanish translation (PP130070), and the subsequent user-guided PFC-SW enhancement and dissemination via social media outlets (PP170036). This proposal will expand PP170036 to deliver PFC evidence-based survivorship services to a medically-underserved and predominantly Latino CCS community. Specific Goals: The Vannie E. Cook Jr. Cancer and Hematology Clinic (VCCC) was established in 2001 as part of Texas Children’s Cancer and Hematology Centers, and is the only pediatric cancer treatment facility serving the Rio Grande Valley. Since its inception, the VCCC treatment team has diagnosed and treated ~1,000 cases of childhood cancer; however, only about 25% have been seen for an LTS visit after completing cancer treatment. Our overarching objective is to develop an effective regional model for survivorship care in a resource-limited setting. To do this, we will deliver survivorship education to CCS that complete treatment and off therapy CCS who have not been seen at VCCC in the past 3 years. We will leverage PFC to generate dual language personalized SCPs for all CCS, and will provide CCS with access to their SCPs and education through the dual language PFC-SW and companion PFC-SW mobile health application. We will identify barriers to clinical service delivery, and address those barriers with innovative, sustainable solutions. Survivorship clinical services, including evidence-based screening and follow-up, will be delivered either in-person or via telemedicine to all CCS. We will establish a bilingual Survivorship Navigator at VCCC who will provide navigation and education services to CCS, CCS families, and community primary care providers (PCPs). Last, we will develop novel strategies for delivering key educational messages and clinical service delivery to CCS, leveraging input from our NCI-designated Cancer Center’s Office of Community Outreach and Engagement. We expect our efforts to augment CCS engagement in survivorship care, increase the number of CCS with a SCP by 70% to 750 CCS, deliver survivorship clinical services to at least 375 CCS, and provide navigation and education services to over 1500 CCS and their families as well as to over 500 local PCPs. Significance and Impact: No survivor should experience adverse outcomes from cancer treatment due to a lack of access to medical care, nor should insufficient knowledge of personal medical history be a barrier to utilizing evidence-based guidelines for determining potential risk for late effects and recommended screening. This project will expand PFC cancer survivorship services to address and reduce suboptimal survivorship healthcare utilization in Latino CCS living in South Texas. We anticipate this work will lay the foundation for future expansion of the PFC resource in regional, national, and international resource-limited settings.
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