Developing the research roadmap together: a report from the patient-centered outcome research institute (PCORI) and pediatric surgical oncology research collaborative (PSORC).
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OBJECTIVE: Patient-Centered Outcomes Research (PCOR) and Comparative Effectiveness Research (CER) focusing on pediatric cancer surgery are insufficient. To address this need, the authors aimed to create an evidence-based PCOR agenda for children with solid tumors. METHODS: Between September 2021 and October 2022, the Pediatric Surgical Oncology Research Collaborative (PSORC) advocacy group, composed of 25 physicians and 25 nonmedical patient/parent stakeholders, developed a research agenda culminating in an in-person meeting. Stakeholders included parents of children treated for solid tumors, survivors of childhood cancers, patient advocates, and pediatric oncology (medical and surgical) providers. A multisource five-component framework was used to develop the roadmap: (1) Education, (2) Topic Generation, (3) Gap Analysis and Systematic Review, (4) Value of Information (VOI) Analysis, and (5) Peer Review. Topic generation involved both physician and stakeholder meetings, focus groups, generating a word cloud, and a survey sent to 48 solid tumor disease and advocacy support groups representing over 1000 families. VOI analysis and peer review were conducted in person with 50 participants (25 stakeholders/25 physicians). Descriptive and thematic results are presented. RESULTS: A systematic review identified only a single surgical PCOR report addressing pediatric solid tumors. Gap analysis demonstrated that surgeons’ goals focused primarily on improving surgical outcomes, whereas stakeholders’ concerns centered on surgeon skill/expertise, second opinions, pain, healing, and communication. The word cloud session identified several key issues: lack of family resources, pain, enhanced recovery, and communication. Important thematic PCOR questions from the survey focused on patient/family lack of knowledge, overwhelming predicaments, immediate surgical treatment options, and shared decision-making between families and surgeons. VOI analysis, peer review, and voting inferred that the primary PCOR agenda should aim to develop a question aid for families/caregivers that increases parent knowledge, engagement, and comfort with cancer surgery and tests the impact of shared decision-making for second opinions to increase parent comfort and participation in the child’s cancer treatment. CONCLUSIONS: Surgical PCOR is lacking and needed to enhance interactions between surgeons and patients/families with pediatric solid tumors. There is a significant discrepancy in the topics and prioritization of PCOR between pediatric surgeons and families. Identifying, understanding, and addressing gaps between patients/families and surgeons may lead to a robust patient-informed research agenda.