Dr Venkataraman on Characterizing the Unmet Needs of AYA Survivors in Sarcoma

"There were specific supportive care and service needs [that these patients felt] would have been [good to know] about earlier in their course, that would have helped them...both during and after their cancer treatment journey."

Vinayak Venkataraman, MD, director of Sarcoma Pathways and affiliated faculty at McGraw/Patterson Center for Population Sciences at Dana-Farber Cancer Institute, as well as an instructor in medicine at Harvard Medical School, shared outcomes from a focus-group study evaluating and characterizing the unmet needs of adolescents and young adults (AYAs) with sarcoma to inform strategies that improve outcomes.

This demographic, defined as patients diagnosed between the ages of 15 and 39, faces a distinct set of physical, emotional, social, and economic challenges that are often underserved by traditional oncologic care models, Venkataraman began.

The study, which utilized purposive sampling to conduct 4 semistructured focus groups of 20 AYA patients with sarcoma treated primarily at Dana-Farber Cancer Institute, identified 3 salient themes that are essential for refining clinical practice to better serve this population, he reported. The first was the significant disruption in mobility and agency caused by the disease and its treatment. This interruption often hindered the patients' social relationships and created a persistent barrier to regaining their pre-diagnosis sense of self, he explained.

Furthermore, the transition from the active treatment phase—which typically involves an intense combination of chemotherapy, radiation, and surgery—to the surveillance phase emerged as a period of profound psychological difficulty, Venkataraman continued. He noted that while family and friends often expect a "return to normal" once a patient is in remission, survivors frequently struggle with a loss of autonomy and the challenge of defining what "normal" means in the context of their post-cancer lives.

Finally, the research highlighted an urgent need for the early integration of supportive services, Venkataraman detailed. Participants felt that having access to specific resources and counseling earlier in their treatment course would have better prepared them for the long-term journey of survivorship, he explained. By addressing these unique service needs from the point of diagnosis, clinicians can better support the autonomy of AYA patients as they navigate the transition from intensive therapy to long-term surveillance, he concluded.