Need: With the continuing improvement in treatment approaches, 84% of children with cancer survive 5 years or more. Survivors, however, remain at risk for cancer recurrence, secondary cancers, and late effects of treatment. In response to national recommendations to improve evidence-based survivor follow-up care, we collaborated with the Children’s Oncology Group (COG) to develop the Passport for Care (PFC), a web-based clinical decision support tool that employs COG’s long-term follow-up survivorship guidelines to generate for survivors a personalized survivorship care plan (SCP) based upon their cancer treatment summary (TS). We developed this freely available online system to democratize...
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Need: With the continuing improvement in treatment approaches, 84% of children with cancer survive 5 years or more. Survivors, however, remain at risk for cancer recurrence, secondary cancers, and late effects of treatment. In response to national recommendations to improve evidence-based survivor follow-up care, we collaborated with the Children’s Oncology Group (COG) to develop the Passport for Care (PFC), a web-based clinical decision support tool that employs COG’s long-term follow-up survivorship guidelines to generate for survivors a personalized survivorship care plan (SCP) based upon their cancer treatment summary (TS). We developed this freely available online system to democratize survivor access to personalized evidence-based follow-up screening recommendations to guide quality follow-up care for survivors in partnership with their clinicians. The PFC is now being used across the nation by 42,500 survivors and their clinicians. Prior CPRIT funding supported dissemination of the PFC to clinicians across a network of clinics; development of the PFC Survivor Website (PFC-SW) in English and Spanish; and, enhancement and dissemination using social media tools. However, challenges to optimal care remain. Up to 50% of survivors are lost to follow-up. Financial hardships and lack of insurance are common in survivors, and access to care may prove particularly challenging when facing healthcare disparities associated with race/ethnicity and living in medically underserved areas and rural counties. In Texas, Latinos comprise 40% of the population with numbers rising to 83% to 96% in the Lower Rio Grande Valley (LRGV). One third of LRGV residents live in poverty, 30% are uninsured, and only half to two thirds have a high school education. Low-income Latinos receiving care in safety net settings experience less satisfaction, weaker relationships with clinicians, and less trust in healthcare providers. Recommendations for bridging the divide include: (1) enhancing Latino relationships with providers and care facilities; (2) increasing access to health information and involvement in decision making; and (3) employing technology including the Internet, text messaging and smartphone applications to further engage patients. Recent studies demonstrate that Latino access to smartphones is nearly that of whites, and that of Latino teens has skyrocketed to 95%. The use of text messaging and smartphones can increase health knowledge and improve attitudes and behaviors in childhood cancer survivors. Overall Project Strategy: Our overall strategy is to engage medically underserved Latino adolescent, young adult cancer survivors and childhood cancer survivors (via parents) through their smart phones. We will share healthcare information on the importance of screening for late effects of previous cancer treatments accompanied by personalized steps to take with their clinicians to protect their health. Goals: (1) Partner with Latino survivors to convert our widely-used website containing evidence-based tools for survivor health follow-up to a mobile health app to meet the healthcare information access and communications needs of medically underserved Latino survivors. (2) Develop an implementation plan for deployment and utilization of the mHealth app through clinics across the state and via Apple and Google app stores. (3) Disseminate the mHealth app to a minimum of 17 clinics serving Latino survivors living in medically underserved areas or rural areas in Texas and evaluate survivor uptake, use, and engagement. Project Significance: This project is designed to reach medically underserved pediatric (via parents), adolescent, and young adult Latino cancer survivors and disseminate actionable evidence (in English and Spanish) to support goals in the short, intermediate, and longer term. These include: (1) in the short term, survivor engagement in their own healthcare by interacting with PFC survivor information and by participation with their clinicians in healthcare decision-making; (2) in the intermediate term, participation in and adherence to follow-up screening for late effects, secondary cancers, and recurrence; and (3) in the longer term-survivor reductions in preventable morbidity and mortality from cancer and its treatment. This dissemination initiative is innovative in that it combines 3 elements to advance implementation of evidence: (1) secure messaging between survivors (and parents/caregivers of survivors) and clinical healthcare providers or with a survivor healthcare navigator; (2) mobile app functionality providing educational resources, bite-sized educational resources, very short quizzes, and links to resources using technology familiar to users; and (3) mHealth app functionality to generate personalized screening recommendations for late effects written in lay language, in English and Spanish, and at lower literacy levels.
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