Beyond the Document: A Single‐Center Qualitative Study of Survivorship Care Plan Barriers and Opportunities Across Pediatric Oncology Stakeholders

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.

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Publication Details

Journal
Pediatric Blood & Cancer
Published
2026-09-10
DOI
https://doi.org/10.1002/1545-5017.70677
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
Field-Weighted Citation Impact
0.00
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article

Beyond the Document: A Single‐Center Qualitative Study of Survivorship Care Plan Barriers and Opportunities Across Pediatric Oncology Stakeholders

Megan E. Salwei, Debra L. Friedman, Emma Fleisher, Laurie L. Novak et al.
Pediatric Blood & Cancer
Childhood Cancer Survivors' Quality of Life
article

Beyond the Document: A Single‐Center Qualitative Study of Survivorship Care Plan Barriers and Opportunities Across Pediatric Oncology Stakeholders

Megan E. Salwei, Debra L. Friedman, Emma Fleisher, Laurie L. Novak, Molly Talman
article en

Abstract

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.

Pediatric Blood & Cancer
Vanderbilt University Medical Center (US)
Openalex Percentile: Top 7%
Childhood Cancer Survivors' Quality of Life
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