Children’s Cancer Cause Champion's Prize Leads to Tech Improvements & Educational Offerings at Survivorship Clinics
One of the many ways we’re working to advance pediatric cancer survivorship care is through our annual Survivorship Champion’s Prize. The Prize was established in 2020 as part of the Stewart Initiative for Childhood Cancer Survivors and is presented to a group, program, or institution making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers.
Since its inception, the Prize has awarded $75,000 to 12 programs across the country to expand access and enhance programs to survivors as they navigate survivorship. In July, we shared Prize recipients’ activities related to the award, and now we bring you further updates on their progress as the 2021-2022 award term ends.
2021 Champion’s Prize Supports Expansion of SurvivorLink™ Platform
Presenting the top Champion’s Prize award to the Cancer Survivor Program of Children’s Healthcare of Atlanta in 2021 has provided the Program with the funding needed to explore expansion of their SurvivorLink™ platform to include a mobile application.
SurvivorLink is a completely patient-controlled electronic Personal Health Record and a HIPAA compliant web-based communication tool. Currently, it is a mobile friendly website accessible on a computer, tablet, or smart phone. Expansion to a mobile application will allow further reach to survivors to aid in their health self-management, especially as they transition to adulthood. The Cancer Survivor Program is in the process of recruiting for qualitative interviews, which will guide next steps in development of the app.
According to Medical Director Dr. Karen Effinger, the Prize will help their program moving forward by laying the groundwork for expanding SurvivorLink, including a potential future NIH grant application. The work funded by the Prize, along with the Program’s other ongoing research efforts to understand the trajectory of survivor care after transition, will greatly impact transition programming and support for survivors as they move into adulthood.
Recognition Awards in Impact, Collaboration, and Scalability
Photo: Staff of the Treatment After Cancer and Late Effects (TACLE) program at Louisiana State University Health Sciences Center
Program Impact: The Treatment After Cancer and Late Effects (TACLE) program at Louisiana State University Health Sciences Center reports that the Program Impact Recognition Award has made a difference in their survivorship services by providing the resources to purchase iPads for the clinic. This has enabled their patients to complete baseline questionnaires electronically, which are automatically entered into TACLE’s late effects database. Questionnaires gather information about vulnerable patients regarding housing and food security, as well as demographic data. The goal is to use this data collection to develop research questions in 1-2 years.
From the patient perspective, completing questionnaires on the iPad is faster and easier, making them more likely to answer every question. This also allows patients to be triaged and seen faster in the clinic. Director of Late Effects Dr. Pinki Prasad noted that, in developing community survivorship programs, it is important to incorporate technology into their programs.
In addition, Dr. Prasad reports that the Recognition Award has provided the opportunity to work more closely with Children’s Cancer Cause and learn how their program can help other survivors. Moving forward, TACLE hopes to use the iPads to develop short two-minute teaching videos about different topics in survivorship for families to view as they wait for their visit or labs.
Photo: Staff of the After Cancer Treatment Survivorship Program (ACTS) at Children’s Hospital of Orange County (CHOC)
Collaboration: The After Cancer Treatment Survivorship Program (ACTS) at Children’s Hospital of Orange County (CHOC) has continued to use their Collaboration Recognition Award funds in a number of ways. The award helped fund the CHOC survivorship resource binder, as well as a CHOC Survivorship Education Day.
The CHOC survivorship resource binder provides access to much-needed mental health resources, oncofertility resources, a list of local adult endocrinology providers, school resources for neurocognitive testing, survivorship research opportunities, scholarships for cancer survivors, and information regarding the CHOC AYA program. The resources are available to patients in English and Spanish.
The September 9th Survivorship Education Day - “Cancer Survivorship Transition: When Teamwork Makes the Dream Work” - was geared towards engaging and networking with community colleagues to provide health literacy around transition and transfer to adult care for pediatric, adolescent, and young adult childhood cancer survivors. The program kicked off with an overview on “Pediatric and AYA Oncology Survivorship” by Dr. Lilibeth Torno, Director of the ACTS program. There was also a presentation on “A PMD’s Transition Experience” by Dr. Maria Peralta, an adult primary care physician. Both highlighted how oncology survivorship transition and transfer can be done successfully.
The program provided an opportunity for cancer survivors and their caregivers to share their powerful stories of transition, including successes, gaps, and helpful tips for providers to minimize the gaps. Dr. Torno stressed that the Recognition Award from Children’s Cancer Cause has positioned this event to be a launching pad for future community survivorship collaboration events.
We’re proud that this Collaboration Award has helped to forge lasting relationships with community providers and strengthen collaboration with CHOC’s A2B (adolescent to adult bridge) adult transition planning program. These networking initiatives with community colleagues provide survivorship health transition literacy and help to identify areas of improvement and ways to better collaborate so that seamless transfer of care is equitable and available for all cancer survivors.
Scalability: The Scalability Recognition Award to Valley Children’s Hospital Childhood Cancer Survivorship Program supported the addition of a program coordinator to help manage the increase in demand for services as the volume of patients returns to pre-COVID levels.
The program coordinator has made strides in running day-to-day operations for the Childhood Cancer Survivorship Clinic. A highlight of these efforts was the planning and execution of a virtual Childhood Cancer Survivorship Conference. It was the 7th annual event and included presentations by Dr. Razzaqi, one of Valley Children's hematologists/oncologists, and cancer survivor Anthony Linares (below).
According to Valley Children’s, the Childhood Cancer Survivorship Conference is an illustration of how the award has enhanced the patient and family survivorship care experience for their program. As the program continues to move forward, the program coordinator will play a critical role in clinic operations and patient engagement through outreach activities.