Improving Survivor Care, Education, and Research through the Survivorship Champion’s Prize
In the coming days, we will announce the 2021 recipients of our Survivorship Champion’s Prize, which is a component of our Stewart Initiative for Childhood Cancer Survivors. The Survivorship Champion’s Prize is presented annually to a group, program or institution making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers.
Before we celebrate the 2021 awardees, we’re excited to share an update on how last year’s Prize funds are making a real difference in the lives of childhood cancer survivors. 2020 was the inaugural year of the Survivorship Champion’s Prize, and the winner of the $10,000 top prize was the Texas Children’s Cancer and Hematology Centers Long-Term Survivor Program. Thanks to the generosity of the Stewart family, three other top-scoring applicants were also recognized with $5,000 awards in special categories of distinction (for Impact, Collaboration, and Scalability).
Read on to hear how last year’s Prize funds are making an impact today.
Texas Children’s Cancer and Hematology Centers Long-Term Survivor Program: Survivorship Champion’s Prize
Improving Passport for Care: 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. Texas Children’s recently conducted a Passport for Care clinician survey, using Champion’s Prize funds to provide incentives for survey completion. Of 148 users surveyed, 87% were generally or very satisfied with Passport for Care. The Texas Children’s team is in the process of implementing changes and modifications to Passport for Care based on survey feedback.
Helping to launch a new podcast: Prize funds were used to purchase equipment for 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, who have been greenlit for the first 6 episodes. 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.
Educating survivors: Prize funds helped purchase 100 copies of Childhood Cancer Survivors: A Practical Guide to your Future to be given to newly established survivors.
Establishing a new research internship: The Texas Children’s Long Term Survivor Program has established a Children’s Cancer Cause Survivorship Research Internship that supports a student research project in cancer survivorship. Applying students will select from a menu of project ideas. The results from their research will be presented as abstracts for national meetings, and will be used as pilot data to support future research funding. This internship will provide program-wide benefits for local survivorship research, in addition to drawing students to the field of oncology and survivorship. Prize funds will go toward the intern’s stipend and have been allocated to fund the internship for several years.
Learn more about the Texas Children’s Long-Term Survivor Program →
The HEROS Clinic for Childhood Cancer Survivorship at Yale School of Medicine: Recognition Award for Impact
“These funds have enhanced the experience of patients in our clinic, expanded our research program, and provided additional resources to improve the health and wellbeing of childhood cancer survivors.”
Improving clinic workflow through technology: Prize funds have been used to enhance the HEROS program by improving the clinic workflow through the purchase of iPads, which enable parents and patients to complete surveys during clinic that are automatically uploaded into a secure database for our research program. The clinic hopes to expand on the use of these iPads by adding additional surveys into each routine visit, to continue to build on their robust research program and to better identify patient’s needs at the start of each visit.
Meeting unique survivor needs: Prize funds have also been used to provide additional resources to survivors who have chronic conditions related to their cancer therapy. Exercise bands and instructions have been given to patients with peripheral neuropathy to help improve strength and flexibility at home. The clinic has been able to reinforce positive health behaviors by providing The Sneaky Chef cookbook to survivors with obesity or dyslipidemia who report challenges in finding healthy food options. This cookbook helps patients and parents incorporate additional fruits and vegetables into their diets. Remaining Prize funds have been reserved to purchase subscriptions to online apps that focus on physical activity and mindfulness for survivors who report anxiety, sleep disturbances, or who do not meet the recommended physical activity guidelines.
LITE Program for Pediatric Cancer Survivors at Rutgers Cancer Institute of New Jersey: Recognition Award for Scalability
We remain grateful to Children's Cancer Cause and for the award that has allowed us to provide a variety of supports to pediatric cancer survivors in these especially trying times.
Educating and connecting survivors: Prize funds are the major funding support for the LITE Program’s outreach survivor education program, known as LITE Nite. This survivor and family event combines an education component with a dinner celebration and a panel discussion that engages all participants in a conversation about quality of life issues for pediatric cancer survivors and their families. The LITE Program is in the process of developing a LITE Nite that is a hybrid of virtual and in-person attendance. The hybrid model will be better able to accommodate unforeseen changes in COVID-19 restrictions and increasing accessibility for survivors who are not comfortable attending in-person while also meeting the expressed preference of survivors who want an in-person event. The hybrid format 2022 LITE Nite program - targeted to take place in May or June - will feature the revised COG long-term follow-up guidelines, coping with pediatric cancer survivorship, and the impact of COVID 19 as survivors and families return to their unique normalcy.
Reaching underserved survivors: The biannual LITE Program newsletter was distributed to 350 survivors on the clinic’s mailing list through paper copy, and a copy of the newsletter is posted on the Rutgers Cancer Institute of New Jersey website. Program staff has found that the hard copy is an effective way of reaching survivors who do not regularly attend the long-term follow-up clinic and those who do not have consistent internet access, as well as actively involved survivors. This edition's topics focused on health issues pertinent to survivors: COVID vaccination for survivors, returning to in-person classroom attendance, meditation to help cope with stress, and nutrition. Also, included with the newsletter was information on two studies in which survivors or their parents can participate: a meditation study for adolescent and young adult pediatric cancer survivors and a parent mentor study.
Addressing survivor concerns about COVID vaccines: Katie Devine, PhD, MPH, and her colleague, Kristine Levonyan-Radloff, MS, are planning a needs survey to assess information and needs about COVID vaccines for pediatric cancer survivors. This survey is driven by the high volume of concerns expressed by survivors related to the suitability and safety of COVID-19 vaccinations.
Children’s Wisconsin Next Steps Survivorship Program: 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 are utilizing Prize funds on a number of research efforts, including research needs (e.g., use of iPads for conducting electronic surveys) and a team research retreat.
