Developing the research roadmap together: a report from the patient-centered outcome research institute (PCORI) and pediatric surgical oncology research collaborative (PSORC)

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.