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Expert consensus on disease-based long-term follow-up care plans for childhood cancer survivors
Jiao-Yang Cai1,2, Ching-Hon Pui3,4, Xiu-Li Ju5
1Hematology and Oncology Follow-Up Center, Key Laboratory of Pediatric Hematology and Oncology of China, Ministry of Health, and National Children's Medical Center (Shanghai), Shanghai Children's Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China. caijyyy@scmc.com.cn.
Background:
Childhood cancer survivors (CCSs) are at increased risk of long-term treatment-related complications. Although international guidelines support risk-based long-term follow-up (LTFU) care, its standardized implementation in China has been limited. To address this gap, the National Children's Medical Center-Shanghai convened a multidisciplinary expert panel to develop disease-based LTFU care plans tailored to the Chinese healthcare context.
Methods:
Guided by established international frameworks (Children's Oncology Group, International Guideline Harmonization Group, and PanCareFollowUp), an expert group representing 25 institutions across China developed consensus-based LTFU care plans for common pediatric cancer patients and post-hematopoietic cell transplant survivors. Each care plan includes core components: a treatment summary, risk stratification for late effects, recommended surveillance, psychosocial evaluation, and lifestyle guidance. The panel also developed a consensus on the specific roles of oncologists, primary care providers, and subspecialists.
Results:
Finalized care plans provide structured, risk-adapted follow-up pathways for CCSs. The model emphasizes multidisciplinary collaboration, clinical feasibility, and scalability across diverse settings. As part of the care process, a centralized survivorship database has been integrated to facilitate clinical use and data collection. This system supports the generation of standardized treatment summaries and longitudinal documentation of late effects across the continuum of survivorship care. Tools, such as clinician checklists and survivor education templates, were also developed to support clinical use and promote consistency across institutions. A list of outcome metrics was proposed to evaluate the implementation outcomes of this initiative.
Conclusions:
This expert consensus establishes an innovative, nationally coordinated, disease-specific LTFU care framework for CCSs in China. This study provides a practical foundation for improving survivorship care quality and guiding clinical practice nationwide. This model can serve as a blueprint for other low- and middle-income countries seeking to strengthen LTFU care for CCSs.
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Guidelines for Writing Outcome
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care...

