Impact Reports from 2022 Champion's Prize Institutions
On behalf of the Stewart Initiative for Childhood Cancer Survivors, Children’s Cancer Cause is pleased to bring you a final update on how funding from the 2022 Survivorship Champion’s Prize is being used to advance survivorship care. Each of the four programs that received funding in 2022 shared with us how the awards made a difference in their survivorship services over the past year.
The Phoenix Children’s Hospital Survivorship Program received our top Survivorship Champion’s Prize award in 2022.
“I am happy to report that the funds have made a significant positive impact on our survivorship clinic and we are grateful to report our progress,” said Program Director, Alexandra Walsh, MD.
The Champion’s Prize helped Phoenix to kick off a new transitional care program they’re calling STEPS (Successfully Transitioning Every Pediatric Survivor). Dr. Walsh stressed that a successful transition from pediatric survivorship to adult care requires thorough education of both survivors and their families, as well as primary care providers in the community.
STEPS progress has included:
Creating a database of primary care practitioners in the state that the program will partner with to provide transitional care;
Providing education to primary care providers in a two-part grand rounds focused on “Introduction to Pediatric Cancer” with a lecture on resources in the community that cancer survivors can utilize, as well as information about the care of childhood cancer survivors; and
Meeting with the Arizona Chapter of the American Academy of Family Practitioners to discuss transitions.
Another area that Prize funds supported was the improvement of access to care for patients in rural locations. Phoenix program staff traveled to the Navajo and Apache reservations to present to the Tribal Council about survivorship care. In addition, they are conducting a financial assessment to create outreach survivor clinics in Flagstaff and Yuma to see patients closer to those locations.
The Survivorship Program has also been giving medals and acknowledgements for patients as they graduate from the clinic by providing framed certificates and a writing journal. The Prize allowed the program to provide these acknowledgements for graduating survivors beyond the current year.
“The Childhood Cancer Survivor team is incredibly grateful for the support and funding received by the Children’s Cancer Cause,” said Dr. Walsh.
Recognition Award Updates:
Children’s Cancer Cause presented the St. Jude survivorship transition program with a Recognition Award for Program Impact in 2022 for its efforts to support survivors and families through major care transitions by providing guidance and education around specific transition-related needs and navigation services.
Emily Browne, DNP, Director of the Transition Oncology Program (TOP), noted that the award from Children’s Cancer Cause provided the resources needed to launch a podcast series. These episodes - focused on the transition off treatment and early survivorship - are available here. The Clinic is developing a handout with QR codes linking to the episodes that will be distributed to all patients, as well as adding them to the Clinic’s online site. Dr. Browne recently presented at the Association of Pediatric Hematology/Oncology Nurses (APHON) and shared this resource with attendees.
The Clinic also utilized funds to purchase and begin distributing books on topics like childhood cancer survivorship, the return to the classroom, and coping with chronic conditions. These books are distributed to TOP school advocacy coordinators, social workers, and psychologists to give to families. This service will be re-evaluated in a few months to determine if it is something that will be continued.
TOP has incorporated three core Champion’s Prize tenets - program impact, collaboration, and scalability - into their strategic plan. They also instituted “Pass the Prize” as part of their team meetings, in which they physically pass the award object to a team member and share how that team member is making a difference in the care of their early childhood cancer survivors.
The Scalability Recognition Award to ASK Childhood Cancer Foundation in 2022 provided resources to allow the foundation to continue to grow their educational support for survivors. Funding provided by the Recognition Award is focused entirely on the Foundation’s online tutoring program for pediatric cancer survivors. According to ASK Executive Director Amy Godkin, the award enabled them to expand its services to patients and survivors treated at three additional treatment centers across Virginia: Inova Schar Cancer Institute (Northern Virginia), Carilion Children’s (Southwest Virginia), and Children’s Hospital of the King’s Daughters (Hampton Roads).
The ASK tutoring program is critical to helping survivors across Virginia move forward after treatment and thrive academically. Grant Pavlik, ASK Education Support Navigator at Children’s Hospital of the Kings Daughter, shared how online tutoring was very impactful for one of his patients:
“I just met with the family of Jose during his neuro-oncology comprehensive clinic. I’ve been working with him and his family since the beginning of March. At that time Jose was having a lot of difficulty at school, especially in Algebra, and with teachers following his 504 plan. After meeting him in March we were able to get him enrolled in tutoring with Brain Bodega and after SEVERAL conversations with his guidance counselor we were finally able to get a 504 meeting scheduled.
Not only did Jose advocate for himself for what he thought he needed in his 504 plan at the meeting (which was shocking because he is typically VERY quiet and reserved) but since we met in March and he started tutoring, his Algebra grade shot up from a D to an A minus. He also let me know today that he passed his math SOL with a score of 482, nearly hitting advanced!
Mom, dad, and Jose were very appreciative of all the support they have been given over the last couple months and asked me to reach out to [Brain Bodega and his tutor] for all the help! Although they wanted to take a break from tutoring this summer they hope to re-enroll for next school year!”
The ASK Foundation expressed gratitude for the support and the awareness around the challenges of survivorship through this award.
The David B. Perini Jr, Quality of Life Clinic for Childhood Cancer Survivors at Dana-Farber Boston Children’s Cancer and Blood Disorders Center used the 2022 Collaboration Recognition Award to renew and innovate their long-standing collaboration with local peer institutions through the Consortium for New England Childhood Cancer Survivors (CONNECCS). The award helped to ensure that CONNECCS will continue to meet the needs of childhood cancer survivors in the post-COVID era and to explore new opportunities for collaborative work.
The Recognition Award funded the largest in-person CONNECCS meeting to date, in April 2023, which had been on hold since the start of the pandemic in Spring 2020. According to the Clinic’s Senior Physician, Lisa Kenney, MD, MPH, the aim of their meeting was consistent with the mission of the Children’s Cancer Cause “to address how we can advance the equitable delivery of survivorship care across our region.”
Outcomes from the meeting included:
Enhanced provider knowledge about issues critical to cancer survivors;
Providers educated about how material hardships result in disparities in outcomes for survivors; and
Identification of CONNECCS members interested in joining a working group to continue to explore the process of bringing virtual survivorship education to adolescents and young adults in the region.
Dr. Kenney noted that perhaps most importantly, the meeting garnered a renewed commitment from CONNECCS members for ongoing collaboration with the shared goal of improving survivor care. The Perini Clinic is confident that the positive changes in collaborative work supported by the award will be sustained well into the future. The David B. Perini Jr. Quality of Life Clinic stressed that the Recognition Award funding has contributed to renewing and innovating initiatives to further their long-standing collaboration with local peer institutions.