Lessons and Advice From Our Patients: A Focus Group of Sarcoma Survivors.

Background: Sarcomas are a rare, encompassing a heterogeneous group of malignancies. Success treatment often requires a combination of surgical resection, chemotherapy, and/or radiation. These life-altering interventions can have lasting impact on function and quality-of-life. There is little known about treatment outcomes from the perspective of sarcoma patients.

Purpose: The initial goal of this investigation was to determine the sources and categories of information patients sought at various time points in their care. In addition, we investigated how participants coped with physical and psychological issues that accompany treatment. Finally, we elicited advice on what the care team did well, and could have been done differently, during their diagnosis and recovery.

Methods: A qualitative, focus group research method was utilized. A purposive sample of participants with a diagnosis of a sarcoma was identified. Three focus groups (20 total participants) were formed and audio/video recorded. The transcripts were analyzed to identify common themes and a scissor-and-sort technique was used to attribute participant comments to the identified themes.

Results: Themes were identified and categorized into four major areas: 1) Information at diagnosis, 2) Relationship with care team, 3) Social support, and 4) Restoration to "normal."

Conclusion: We identified several areas that can be addressed to enhance patient counseling, emotional understanding, and expectations of treatment. These can serve as a guide for future research endeavors and program development.