Elevating the Voice of the Survivor at International Forum on Late Complications
Children’s Cancer Cause was proud to present a poster at the June 15-17th International Symposium on Late Complications After Childhood Cancer (ISLCCC) in Atlanta, Georgia. The symposium showcases cutting-edge research findings and valuable insights gained from real-world clinical practice, with the aim of fostering research collaborations and enhancing survivorship care on a global scale.
Our abstract - Elevating the Voice of the Survivor to Improve Survivorship Care Planning – can be read in its entirety here and is an outgrowth of our work on the FDA-approved Externally-led Patient-Focused Drug Development (EL-PFDD) meeting on Reducing Cardiac Late Effects In Pediatric Cancer Survivors.
In related news, Children’s Cancer Cause just released the final report from that EL-PFDD meeting yesterday. The Voice of the Patient report is available here.
Our abstract emphasizes the role of advocacy organizations like ours in improving survivorship care planning and informing public policy efforts by providing opportunities for childhood cancer survivors and caregivers to share their perspectives with stakeholders.
Using results from our annual survey of childhood cancer survivors (see Figure 1, below) and the case study of our EL-PFDD meeting on cardiac late effects, we outlined the trajectory of utilizing survivor input to formulate top priorities and implement programs that explore gaps in long-term follow-up care and work toward solutions that lessen the burden of late effects.
We’re grateful to the ISLCCC for the opportunity to present on the role of advocacy initiatives in improving survivorship care. We’re especially grateful to survivors and caregivers who bravely shared their stories and unique insights to help create a brighter future for the survivors of today and tomorrow.
