Background: Though adolescents and young adults (AYA) with Hodgkin lymphoma (HL) experience high cure rates, previous studies suggest that this population experiences significant symptom burdens which contribute to poor quality of life. We thus aimed to characterize the prevalence, trajectory, and predictors of symptom burdens among a population-based cohort of AYA with HL.

Methods: All Ontario, Canada AYA aged 15-29 years with a HL diagnosis between 2010-2018 were identified and linked to population-based healthcare databases. Symptom burdens were determined through linkage to Edmonton Symptom Assessment System-Revised (ESAS-r) scores, routinely obtained from Ontario cancer patients at the time of outpatient visits and collected provincially. For each symptom, multistate transition models estimated mean single-stay duration of specific severity states [none (0) vs. mild (1 vs. 2 vs. 3) vs. moderate (4-6) vs. severe (7-9)], trajectories, and associations with death. Logistic regression models determined patient, disease, and treatment-related variables associated with experiencing severe symptoms within the first year of diagnosis.

Results: 672 AYA with HL and at least one ESAS-r score were included in the cohort, with a median age of 23 years [interquartile range (IQR) 21-26 years] and of whom 339 (50.4%) were male. The median number of ESAS scores in the first year of diagnosis was 9 (IQR 4-13). The most prevalent moderate or severe symptom was fatigue, impacting 66.1% of AYA during the first year after diagnosis. Moderate or severe fatigue remained prevalent throughout the year, and was reported by 48/214 (22.4%) ESAS-r screens in the last six weeks of the year. Severe fatigue was experienced by 29.8% of AYA, and was reported by 19/214 (8.9%) ESAS-r screens in the last six weeks of the year. Other prevalent moderate or severe symptoms included drowsiness (48.8% of AYA), anxiety (46.1%) and poor appetite (44.3%). Anxiety and fatigue were associated with the longest mean sojourn time in the severe state (0.8 months and 0.7 months respectively). Overall, AYA experiencing moderate symptoms were more likely to subsequently experience improvement vs. worsening symptoms. Female AYA were more likely to experience moderate or severe levels of most symptoms compared to males. For example, females were approximately twice as likely to report severe anxiety [adjusted odds ratio (aOR) 1.99, 95th confidence interval (95CI) 1.22-3.23], nausea (aOR 2.19, 95CI 1.13-4.25), and fatigue (aOR 1.69, 95CI 1.20-2.37). Presenting disease stage was not associated with severity of symptom burden for any symptom. Encouragingly, no consistent disparities in symptom burden were seen among AYA living in rural or poor urban neighborhoods, compared to AYA living in the richest urban neighbourhoods. Similarly, no consistent disparities were observed among AYA living in Northern Ontario. However, one exception to this broadly positive trend was that AYA in the poorest urban areas were more likely to report severe pain (aOR 2.93, 95CI 1.32-6.49).

Conclusions: AYA with HL experience substantial symptom burdens. Cancer-related fatigue and anxiety are particularly prevalent both during and after treatment. Interventions targeting these symptoms are likely to have the most impact in improving quality of life in this population, particularly those that account for sex-based differences in reporting and prevalence.

Gupta:Jazz Pharmaceuticals: Honoraria.

Author notes


Asterisk with author names denotes non-ASH members.

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