Exploring Key Unmet Supportive Care Needs of Adolescent and Young Adult Cancer Patients: A Qualitative Study to Inform Regional Program Development.

Background

Adolescents and young adults (AYAs; aged 15-39) diagnosed with cancer face distinct challenges that are poorly addressed within traditional cancer care models. This qualitative study explored AYAs' unmet supportive cancer care needs in Eastern Ontario (Canada) to inform the development of a tailored multidisciplinary program.

Methods

As part of a larger mixed-methods study, AYAs receiving/post-cancer treatment in the Champlain region of Eastern Ontario were purposively recruited to complete a survey and a semi-structured interview. Demographic and interview data were analyzed descriptively and via thematic analysis, respectively.

Results

Sixteen AYAs (Mage = 32.2 years [range: 19-42]; 56.3% female) were interviewed virtually using a co-designed, semi-structured guide between October 2024 and February 2025. Analysis revealed five themes (i.e., major care gaps) and 12 sub-themes, including: (1) lack of standardized fertility counselling, (2) neglected psycho-emotional impact, (3) limited sexual health education and support, (4) difficulty navigating the healthcare system, and (5) financial toxicity and the cost of being sick young.

Conclusions

AYAs in Eastern Ontario face persistent gaps in supportive cancer care that undermine their quality of life. Our findings underscore the need for targeted system-level improvements and offer a foundation for co-designing an evidence-based regional AYA care model that better addresses the holistic needs of this growing population.