Our Champion's Prize is Making an Impact at Survivorship Clinics
On behalf of the Stewart Survivorship Initiative, Children’s Cancer Cause is excited to share an update on how funding from the inaugural Survivorship Champion’s Prize is being used to advance survivorship care. We’re pleased to report on the work being done by our 2020 Prize recipients as we open the application for the 2021 Survivorship Champion’s Prize.
The top Champion’s Prize winner - Texas Children’s Cancer and Hematology Centers Long-Term Survivor Program - has identified several initiatives being supported by the Prize:
In the past year, extensive updates were made to the Passport for Care Clinician Website to further improve website functionality. Passport for Care is a clinical decision support tool that facilitates generation of a personalized Survivorship Care Plan from diagnosis and treatment information, using the Children’s Oncology Group Long-Term Follow-Up Guidelines.
The program has allocated Prize funds to develop and disseminate a comprehensive survey to clinician users that will obtain input and feedback regarding these changes, as well as more information on how sites are using this resource.
The Long-Term Survivor team has also voted to purchase copies of Childhood Cancer Survivors: A Practical Guide to your Future, a book co-written by the mother of a leukemia survivor and a pediatric oncologist, for every survivor at the entry to survivorship visit.
Finally, these funds will support a new survivorship podcast called Life After Cure. The podcast is hosted by the Texas Children’s Long-Term Survivor clinical team, Dr. Omar Shakeel and nurse practitioner Alicia Howell, and will be broadcast monthly for a lay audience. The goals of the podcast will be to connect survivors and their families, address common questions, talk about new and exciting survivorship research, and provide educational information on topics relevant to the survivor community. Guests will include local clinical and research experts, national leaders in childhood cancer survivorship, and last but certainly not least, survivors and their families.
Learn more about the Texas Children’s Long-Term Survivor Program →
The LITE Program for Pediatric Cancer Survivors at Rutgers Cancer Institute of New Jersey received a 2020 Recognition Award for Scalability.
Funds are being used to support a combined virtual or in person outreach survivor education program, tentatively scheduled for the Fall of 2021. The previous annual event for childhood cancer survivors and their families took place in person with dinner, an informational session, an interactive program, as well as networking opportunities for families. This year, the LITE Program wants to expand the event by making it virtual. This will provide opportunities for survivors outside of their normal geographic cohort, some of whom are already involved in CINJ Population Science projects, to more easily participate without needing to travel to Rutgers-New Brunswick.
The LITE Program has also expanded use of telemedicine for survivor visits, including psychologists’ visits, and continues to update their educational materials and move the information to an online portal through Passport for Care.
CINJ’s Population Science program is also moving along with the “Managing Your Health” study, having completed the development of online modules, and recruited the first 50 survivors and 10 peer mentors. The initial data and feedback have been collected and are now being analyzed. They hope to make this study more broadly available using the above virtual platform to recruit families.
Children’s Wisconsin Next Steps Survivorship Program was the recipient of a Recognition Award for Collaboration. Next Steps has focused on expanding research efforts within their survivorship program. Research is critical to furthering the understanding of long-term risks for childhood cancer survivors, including how best to support patients/caregivers, how to identify long-term adverse effects, and how to prevent late complications. They plan to utilize the funds on a number of research efforts, including looking at research needs (e.g., use of iPads for conducting electronic surveys), and a team research retreat this summer (pandemic-permitting).
The retreat will allow the team to come together to complete ongoing projects and set goals for future collaborations, including engagement with new team members specializing in onco-fertility, cardio-oncology, and genetic predisposition.
The Next Steps Program is also focusing clinical efforts on expanding telemedicine outreach across the state. This includes collaborating with community pediatric hematology/oncology groups where we will provide comprehensive telehealth survivorship visits to their survivors (including a tele-visit with our RN/MD/APP, dietician, psychologist, social worker, and school teachers). They plan to incorporate a feasibility/acceptability research component to this clinical effort.
In addition, a collaborative workgroup is being formed between the pediatric and adult cancer centers, where a focus will be on improving transition of care from pediatric to adult providers. Within this program, they hope to increase primary care provider knowledge on caring for cancer survivors (through the development of a resident clinical/educational rotation and educational materials for current practicing providers).
The HEROS Program for Childhood Cancer Survivorship at Yale School of Medicine received a Recognition Award for Impact in 2020 and plans to use Prize funds to provide better supportive care for childhood cancer survivors to help improve quality of life with services not available in their clinic or hospital.
The HEROS Program plans to purchase tablets so that patients and their parents can easily report how they are doing in terms of physical complaints, mood, emotions, and school functioning while. They will share this information while in the waiting room so clinicians can tailor survivorship clinic visits to patients’ specific questions and needs.
The Program has also set aside money for a wellness toolkit to be shared with patients of low financial means and high health needs. The toolkit will include collapsible stationary bikes for overweight children who received cardiotoxic medications, kid-friendly healthy cookbooks, the Headspace app for stress reduction, a self-guided journal for reflection on the cancer journey, and the Noom app for exercise and healthy eating.