Update from 2022 Champion’s Prize Recipients
On behalf of the Stewart Initiative for Childhood Cancer Survivors, Children’s Cancer Cause is pleased to bring you an 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 was asked to tell us about how the awards have made a difference in their survivorship services to date and how it positions their programs moving forward.
Survivorship Program team at Phoenix Children’s Hospital, pictured here with the 2022 Survivorship Champion’s Prize
Survivorship Champion’s Prize: Top Recipient
Since receiving the Survivorship Champion’s Prize in October, Phoenix Children’s Hospital Survivorship Program has been able to raise more awareness about their program — within the hospital and medical community, and the community at large.
This program was awarded the Champion’s Prize in recognition of their patient-centric research and multidisciplinary care model. The Program’s Medical Director, Dr. Alexandra Walsh, shared that the Prize has boosted pride within the program and increased momentum to continue to create innovative programs.
The overall goal for the funding is support the creation of the STEPS transition program (Successful Transition of Every Pediatric Survivor) and they are reaching out to other cancer centers, academic medical centers, and healthcare facilities to identify the best transition partner in their community. The Prize has provided momentum and seed funding to create the STEPs program, advertise it, and educate their survivors about its creation. A business plan for the STEPS program has been developed, which proposes the addition of a nurse practitioner to work with both with their survivorship program and the partner organization.
Recognition Awards:
Transition Oncology Program team at St. Jude, pictured here with the 2022 Program Impact award
Program Impact: The St. Jude Transition Oncology Program (TOP) was selected in recognition of their 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, Director of TOP, notes that the award has served as both a tangible (financial) and intangible (source of inspiration and motivation) boost to their team. It has bolstered their commitment and sense of dedication to serving childhood cancer survivors and their families.
The award is contributing to the production of a podcast focused on the transition from treatment to early survivorship. This is a project advocated by their Patient Family Advisory Council, and they are in the process of finalizing the participants and working with the production team. Award funds are also being used to add to their library of books and other patient-facing resources focused on childhood cancer survivorship, the return to the classroom, and coping with chronic conditions. These are to be given to families on an ad hoc basis when members of the team recognize the potential benefit during an appointment.
As TOP develops their team’s strategic plan for the next six years, they plan to incorporate the tenets of the award, including the focus on program impact, collaboration, and scalability.
Program team at the David B. Perini Jr. Quality of Life Clinic for Childhood Cancer Survivors, pictured here with the 2022 Collaboration Award
Collaboration: The David B. Perini Jr. Quality of Life Clinic for Childhood Cancer Survivors at Dana-Farber Boston Children’s Cancer and Blood Disorders Center received the collaboration award to acknowledge their Project Reach and the regional consortium they established to address the needs of survivors of pediatric cancers.
Program leader Dr. Lisa Kenney reports that they are using this recognition award to innovate their long-standing collaboration with local peer institutions through the Consortium for New England Childhood Cancer Survivors (CONNECCS), to assure that they continue to meet the needs of childhood cancer survivors in the post-COVID era.
As the founders and leaders of CONNECCS, they have taken a number of steps to enhance their collaborative efforts. They facilitated brainstorming sessions in November and December with representatives of each of the 11-member pediatric oncology survivorship programs to address how the structure and function of CONNECCS can continue to meet the needs of current and future patients. These sessions helped renew member institution commitment to ongoing collaboration on behalf of childhood cancer survivors in their region. The program also developed and distributed a CONNECCS member survey in January to collect information from the larger membership about patient needs and gage interest in virtual educational programing for survivors and families.
They are actively planning an in-person CONNECCS meeting at Dana Farber Cancer Institute in April to celebrate this renewed commitment to collaboration on behalf of survivors. The meeting aims to address how they can advance the equitable delivery of survivorship care across the region. The agenda includes a special guest speaker on the impact of material hardship on disparities in cancer survivorship and a roundtable discussion exploring how to bring virtual survivorship educational programs to diverse populations of AYA cancer survivors followed at their member institutions.
Scalability: The ASK Childhood Cancer Foundation was recognized for providing comprehensive educational support for childhood cancer survivors from preschool through young adulthood, with a focus on reaching survivors where they are in the community. Amy Godkin, the Foundation’s Executive Director, reports that so far the award has allowed ASK to provide online tutoring services to more pediatric cancer survivors this school year in Central Virginia. They have been able to increase their overall online tutoring services by 10% in Central Virginia. They have provided 380 hours of instruction and 420 tutoring sessions.
This award has allowed ASK to increase their online tutoring services in the past four months, which positively impacts students beyond simply higher content and subject matter understanding. Parents report that the tutoring services help their child with confidence, emotional support, self-advocacy, time management, and/or organizational skills. Cognitive late effects of cancer treatment, which often include slower processing and ADHD-like symptoms, make the support of these additional skills critical to a student's success in school.
The award will allow ASK to expand its online tutoring services to pediatric cancer survivors in other parts of Virginia in the 2023-2024 school year. These areas may include survivors who were treated and are followed at Carilion Hospital in Roanoke, UVA Children's Hospital in Charlottesville, Inova Schar Cancer Institute in Fairfax, and Children's Hospital of the King's Daughter in Norfolk. The award funds will continue to help ASK to provide educational support more equitability across the state, regardless of where a survivor lives.