Patient- and Caregiver-Reported Outcomes After Limb Salvage or Amputation for Pediatric Bone and Soft Tissue Sarcomas: A Scoping Review

Purpose Children diagnosed with bone tumors or soft tissue sarcomas often undergo limb salvage surgery or amputation, procedures that shape long-term functioning and quality of life (QOL). Patient- and caregiver-reported outcomes (PROs) provide essential insight into physical, psychosocial, and participation impacts, yet existing evidence is dispersed and methodologically heterogeneous. This scoping review mapped the PRO literature for children, survivors, and caregivers following limb surgery and identified gaps limiting clinical care and research advancement. Methods Six databases were searched. Eligible studies included children with bone or soft-tissue sarcomas and their family caregivers that reported PROs or needs related to limb salvage or amputation. Two reviewers independently screened studies and charted data. Quantitative and qualitative findings were summarized descriptively and synthesized narratively across QOL domains. Results Twenty-seven studies fulfilled inclusion criteria. Physical functioning was the most assessed domain, with generally moderate-to-good outcomes and limited differences between limb salvage and amputation. Pain remained common months to years post-surgery. Psychosocial findings were mixed, reflecting peer acceptance but also body image, recreation, and school participation challenges. Only four studies included caregivers, who reported anxiety, depression, financial strain, and shifting family roles. Across studies, PRO measurement was highly heterogeneous, with inconsistent domains of assessment, measurement tool use, and timepoints. Conclusions Children and families experience complex functional and psychosocial impacts after limb surgery, underscoring needs for enhanced rehabilitation, pain care, school reintegration, and caregiver support. A coordinated measurement agenda—including core PRO domains, longitudinal assessment, and family-centered approaches—is essential to strengthen evidence and improve survivorship care.