Background: Cancer is a leading cause of death in children. Removal of solid tumors is paramount to survival, yet patient-centered research is limited in surgical decision making. The Pediatric Surgical Oncology Research Collaborative (PSORC, 2017) includes 41 institutions with the mission to improve surgical outcomes for children with cancer. In 2020, the PSORC Patient Advocate committee was organized to address this research gap. To date, the committee has met virtually 4 times. Identified gaps are in communicating surgical options with families, and outcomes related to physical, mental, and reproductive health.
Proposed Solution to the Problem: Surgical treatment choices impact survival and quality of life. At the first PSORC patient advocate meeting, one caregiver said, "My daughter’s surgeon would only do limb sparing surgery, although other options were available. After 11 years of surgeries, pain, and limited mobility, she had an amputation and was able to be active again." The first step to solving these problems is to partner with stakeholders to design a roadmap to focus on long-term needs.
Objectives: This project will focus on kidney, bone, liver, and soft tissue tumor cancers because they are the most common solid tumors.
The Aims of this project are:
• Enable caregivers of patients with cancer to engage in patient-centered outcomes research and comparative clinical effectiveness research (PCOR/CER) on surgical outcomes
• Develop a patient-centered model to use as a roadmap for future PCOR/CER based on patient-centered priorities
• Ensure broad stakeholder representation
• Formalize the conference agenda
• Develop research questions using PCORI standards
• Create an environment conducive to open, productive discussion by introducing stakeholders to each other during an informal dinner
• Empower caregivers to ask questions and share their experiences
• Discuss PCOR/CER
• Define the problem from the patient/caregiver/surgeon perspective
• Identify what caregivers want researchers to know
• Breakout rooms to develop key questions, priorities, and formulate a list of projects
• Rank projects
• Meet virtually to assess conference
• Create materials to be shared
• Develop a model project funded by PCORI
• Prepare appropriate reports for PCORI
• Apply for a PCORI research award (post-project period)
Projected Outcomes and Outputs:
• A prioritized list of patient-centered pediatric surgical oncology comparative effectiveness research projects
• A roadmap to these projects
• A white paper published in a major pediatric surgery or cancer journal and available to caregiver advocacy groups
Medium Term (Post-Project Period)
• Initiate one of those projects
• Meet monthly with the PSORC patient advocacy group
Long Term (Post-Project Period)
• Complete one of the projects on the roadmap
• Publish results
• Obtain sustainability funding of PSORC
Patient and Stakeholder Engagement Plan: The Engagement Team includes patients, caregivers, and survivors in the PSORC Patient Advocates (liver, bone, kidney, and neuroblastoma), Little Warrior Foundation (sarcoma), Joey’s Wings (kidney); Osteosarcoma Collaborative (bone), and the Sam Day Foundation (rare cancers). PSORC and the Engagement Team will have representatives on monthly conference meetings.
Project Collaborators: The lead institution is the University of Michigan (UM) which will provide conference rooms, AV support, and reduced hotel rates. Subcontractors include Cincinnati Children’s Hospital and members of the Patient-Stakeholder team.