Champion’s Prize is Helping Clinics Improve Survivor Education and Engagement
Photo: Staff of Valley Children’s Hospital Childhood Cancer Survivorship Program
2021 Champion’s Prize Recipients Share Updates and Progress
Children’s Cancer Cause is proud of our efforts to advance survivorship care for pediatric cancer survivors with the annual Survivorship Champion’s Prize. The Prize was established in 2020 through 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 $50,000 to eight programs across the country working to expand access and enhance programs for survivors.
In April, we shared 2021 Prize recipients’ activities related to the award, and we’re thrilled to bring you these additional progress updates today:
2021 Champion’s Prize Awardee Update
The 2021 Champion’s Prize was awarded to the Cancer Survivor Program at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. This program is using the funds to aid in the development of a mobile application for their SurvivorLink™ website. 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 (www.cancersurvivorlink.org) and can be accessed on a patient’s computer, tablet, or smart phone.
The goal of this project is to interview survivors and caregivers to determine their content priorities and design preferences for a mobile application to meet survivors’ self-identified health management needs. They continue to work with partners at HIMformatics and the Intervention Development, Dissemination and Implementation (IDDI) Shared Resource at Winship Cancer Institute to develop the interview guide and pursue institutional review board (IRB) approval for project. Once they have IRB approval, they will begin recruitment for the qualitative interviews.
The Cancer Survivor Program at the Aflac Cancer and Blood Disorders Center also continues efforts on its National Institutes of Health grant to explore institutional barriers to care transitions - both locally and nationally.
The goal is to use the results from both of these projects to develop a transition toolkit for adolescent/young adult survivors of childhood cancer using the SurvivorLink mobile application.
2021 Recognition Awardee Updates
Photo: Valley Children’s presents a Scholarship Award to a childhood cancer survivor
2021 Scalability Awardee: Valley Children’s Hospital Childhood Cancer Survivorship Program has added a program coordinator to help manage the increase in demand for services as the volume of patients returns to pre-COVID levels and as patients transition to survivorship care post-treatment. The program coordinator is also implementing new patient engagement initiatives this year.
Valley Children’s also launched a Scholarship Award Program to support cancer survivors who have completed the Childhood Cancer Survivorship Program and are pursuing either a college education or trade school.
2021 Program Impact Award: The Treatment After Cancer and Late Effects (TACLE) program at Louisiana State University Health Sciences Center has secured iPads for patients to complete a variety of questionnaires to gather information about vulnerable patients regarding housing and food security, as well as demographic data. They are currently setting up these questionnaires for families to fill out during clinic visits. The iPads are also being used for family support, such as educational programs for patients and parents. Information provided includes resources from the hospital as well as from different survivorship websites. Families are encouraged to look at the material while they are triaged and waiting for the doctor.
2021 Collaboration Award: The After Cancer Treatment Survivorship Program at Children’s Hospital of Orange County (CHOC) continues to use the recognition award funds for numerous activities. As the lead site for Southern California-Pediatric Adolescent Cancer Survivorship Consortium, they are planning a September 9th CHOC Education Day-Networking program: the “Cancer Survivorship Transition: When Teamwork Makes the Dream Work.” The program is for educating and networking with community providers and subspecialists regarding the lifelong journey of cancer survivorship, including identifying gaps in care and the importance of a seamless transfer of care from pediatrics to adult care.
CHOC has created a survivorship resource binder with a list of resources available to patients and families in both English and Spanish, which includes school resources/requests (IEP/504); mental health resources; scholarship opportunities; information about the CHOC Adolescent and Young Adult (AYA) team; community adult endocrinology resources; community dental resources; and fertility specialists and resources. CHOC also continues developing a Mindfulness/Mental Health Mobile Intervention for AYA and childhood cancer survivors.
Other recent CHOC collaboration efforts include:
Offering collaboration with the CHOC Adolescent and Young Adult team, making referrals to other providers as needed;
Working with Adolescent to Adult Bridge (A2B) on adult transition planning and identifying community primary care providers;
A June podium presentation at the Southern California Association of Pediatric Hematology Oncology Nurses (SCAPHON) Annual Conference, on “The Next Chapter: The Journey of Survivorship: From End of Therapy to Long Term Follow Up”
Collaborating with the CHOC neuropsychology team on a cognitive remediation program for pediatric survivors of cancer.
We’re especially proud to share that two of these programs have been collaborating together this year: CHOC is the highest-enrolling site in the Aflac Cancer and Blood Disorders Center’s SurvivorLink. These collaborations ensure that survivors across the country are receiving the best-possible care to help safeguard their long-term health and quality of life.