The health-related quality of life (HRQOL) of adolescents and young adults (AYAs) with cancer is lower than that of other age groups. A modifiable predictor of HRQOL is symptom burden. For a study, researchers sought to determine which symptoms were the most distressing to AYAs with advanced cancer.

In the observational study, English-speaking patients with advanced cancer between the ages of 12 and 25 completed questionnaires to gauge their symptom burden (Memorial Symptom Assessment Scale) and health-related quality of life (HRQOL) (Pediatric Quality of Life Inventory Generic Form and Cancer Module; minimal clinically important difference 4.4). Participants were classified as having a low (<7) or high (≥7) prevalence of symptoms. Mixed regression models predicted HRQOL differences between groups. Unadjusted mixed models estimated declines in HRQOL for certain symptoms.

Baseline questionnaires were completed by N = 58 AYAs. The median age was 17 years (IQR 15-19), 58% of the population classified as male, 59% as white, and 44% had been diagnosed with leukemia or lymphoma. In comparison to low symptom prevalence, high symptom prevalence was related to a mean generic HRQOL score that was 7 points lower on average (95% CI: -11, -3; P<0.01) and a cancer-specific HRQOL score that was 12 points lower (95% CI: -17, -7; P<0.01). The 3 most common complaints were pain (58%) and difficulties sleeping (58%), respectively. The most significant decreases in the general HRQOL score were linked to fatigue (-8), difficulties focusing (-7), and mouth sores (-6). The biggest declines in cancer-specific HRQOL scores were linked to dysphagia (-12), trouble focusing (-12), and sadness (-11).

AYAs with advanced cancer have distinct symptom experiences. An independent assessment of AYA’s symptoms may enhance therapy and raise HRQOL.