Disrupted Independence—Supporting Adolescents and Young Adults with Sarcoma in Maintaining Autonomy: A Qualitative Study

Abstract

Purpose:

Adolescents and young adults (AYAs; 15–39 years) with sarcoma undergo intensive therapies during a vulnerable time in their lives. We aimed to characterize the unmet needs of AYAs with sarcoma to inform strategies that improve outcomes.

Methods:

We used purposive sampling to conduct semistructured focus groups of AYAs with sarcoma treated primarily at Dana-Farber Cancer Institute. Focus groups were conducted via Zoom by trained moderators and focused on experiences with treatment, decision-making, care communication, supportive care services, and the effects of cancer on daily life. Focus groups were audio recorded, transcribed, and thematically analyzed via a team-based approach.

Results:

We conducted four focus groups with 20 participants (16–34 years) adolescents, emerging adults, young adults, and those with recurrent/metastatic disease. Participants confirmed that sarcoma and its treatment affected their physical, emotional, social, and economic health. We identified three key overarching themes: (1) Disruption to agency and mobility negatively impacted well-being and social relations; (2) The transition from “active treatment” to “surveillance” was fraught as it often magnified challenges of “returning to normal” and loss of autonomy; and (3) Additional supports and services may help address identified unmet needs and gaps in care. Participants expressed a desire for support services to be introduced earlier to help facilitate independence.

Conclusion:

AYAs with sarcoma experience loss of agency, mobility, and impaired well-being due to their diagnoses and treatments. They desire early introduction of supportive services, and care teams can proactively address these challenges by connecting patients with targeted services, resources, tools, and community.