Pediatric blood & cancer · 2026
Beyond the Document: A Single-Center Qualitative Study of Survivorship Care Plan Barriers and Opportunities Across Pediatric Oncology Stakeholders.
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Talman Molly S, Fleisher Emma, Salwei Megan E, Friedman Debra, Novak Laurie
Аннотация
BACKGROUND: Survivorship care plans (SCPs) summarize cancer treatment and guide risk-based follow-up for cancer survivors, yet remain difficult to create, share, and use. Stakeholder perspectives are needed to inform usable approaches.
OBJECTIVE: To characterize how SCPs are created, shared, and used in pediatric oncology and identify stakeholder priorities for improving workflows and SCP design.
METHODS: We conducted semi-structured interviews with childhood cancer survivors and family members, primary care providers (PCPs), and oncology clinicians at a single academic center. Interviews explored SCP receipt or creation, usefulness, barriers, and communication across care settings. Transcripts were analyzed using inductive thematic analysis, with interpretation informed by a sociotechnical work-system perspective.
RESULTS: Twenty-one participants were interviewed: seven survivor/family participants (one survivor, six caregivers), nine PCPs, and five oncology clinicians. Four higher order themes were identified: (i) Survivorship care remained oncology-centered, reflecting relational continuity developed during treatment and uncertainty about shared-care roles. (ii) SCPs were valued but poorly integrated into clinical workflows. (iii) SCP content reflected standardized documentation more than tailored user needs: families needed understandable information, PCPs needed concise action items and role clarity, and oncology clinicians needed detailed treatment and guideline information. (iv) Stakeholders viewed digital and AI-assisted tools as potentially helpful for reducing manual work and improving access, but emphasized accuracy, transparency, and oversight.
CONCLUSION: SCP challenges extend beyond the document to surrounding systems of communication, responsibility, and workflow. Future SCPs should be embedded in clinical processes and designed as role-specific, user-centered tools, with technology supporting rather than replacing clinician judgment and relational continuity.
OBJECTIVE: To characterize how SCPs are created, shared, and used in pediatric oncology and identify stakeholder priorities for improving workflows and SCP design.
METHODS: We conducted semi-structured interviews with childhood cancer survivors and family members, primary care providers (PCPs), and oncology clinicians at a single academic center. Interviews explored SCP receipt or creation, usefulness, barriers, and communication across care settings. Transcripts were analyzed using inductive thematic analysis, with interpretation informed by a sociotechnical work-system perspective.
RESULTS: Twenty-one participants were interviewed: seven survivor/family participants (one survivor, six caregivers), nine PCPs, and five oncology clinicians. Four higher order themes were identified: (i) Survivorship care remained oncology-centered, reflecting relational continuity developed during treatment and uncertainty about shared-care roles. (ii) SCPs were valued but poorly integrated into clinical workflows. (iii) SCP content reflected standardized documentation more than tailored user needs: families needed understandable information, PCPs needed concise action items and role clarity, and oncology clinicians needed detailed treatment and guideline information. (iv) Stakeholders viewed digital and AI-assisted tools as potentially helpful for reducing manual work and improving access, but emphasized accuracy, transparency, and oversight.
CONCLUSION: SCP challenges extend beyond the document to surrounding systems of communication, responsibility, and workflow. Future SCPs should be embedded in clinical processes and designed as role-specific, user-centered tools, with technology supporting rather than replacing clinician judgment and relational continuity.