Opportunities to Improve Care for Young Adults with Resectable Extremity Sarcoma: A Qualitative Study Highlighting Age-Specific Barriers

Abstract

Background:

Sarcomas are rare, heterogeneous malignancies that disproportionately affect adolescents and young adults (AYAs) aged 15–39 years. Despite representing less than 1% of new cancer diagnoses in the United States, sarcoma is a leading cause of mortality in individuals under 20 years old. Although age-specific challenges that may compromise long-term survivorship have been investigated, the specific experiences and perspectives of young adults navigating the sarcoma care continuum remain underexplored.

Methods:

We conducted a qualitative study using semistructured, web-based interviews with AYAs (18–39 years) who underwent surgical resection for extremity sarcoma at a single comprehensive cancer center, conducting interviews between August 2024 and January 2025. Participants were recruited from an orthopedic oncology clinic and consented electronically. Interviews explored experiences from diagnosis through recovery, including communication, support systems, and perioperative education. Transcripts were analyzed using inductive thematic analysis.

Results:

In total, 14 participants (64% female) with diverse sarcoma subtypes and treatment histories completed interviews. Themes included (1) diagnostic challenges, such as low clinical suspicion and delays in referral to sarcoma specialists; (2) the critical role of support systems during diagnosis and hospitalization; and (3) communication gaps regarding fertility, financial concerns, postoperative complications, and long-term recovery.

Conclusions:

AYAs with sarcoma face unique barriers across the care continuum, including delayed diagnosis, limited psychosocial support, and insufficient perioperative education. Interventions to improve early recognition, strengthen referral pathways, enhance communication, and deliver tailored resources are urgently needed. Larger, multicenter studies should validate these findings and inform strategies to optimize outcomes for this vulnerable population.