Identifying trends for high symptom burden across the care continuum in adolescents and young adults (AYA) with hematologic malignancies.
Journal of Clinical Oncology(2022)
Abstract
10019 Background: Cancer in adolescence and young adulthood is a non-normative life event associated with profound long-term physical and psychosocial consequences. Prior studies specifically demonstrate AYA patients with hematologic malignancies experience high symptom burden with poor quality of life. Here, we describe trends and factors associated with high symptom burden in patients treated at a multi-disciplinary AYA leukemia clinic at an academic medical center. Methods: The Edmonton Symptom Assessment Scale [ESAS] (measuring physical symptoms) and Brief Symptom Inventory-18 [BSI-18] (measuring psychological distress) were administered at baseline, 3 months, and 6 months from initial survey. Baseline demographic and treatment characteristics were collected. All patients had leukemia or lymphoma, were on treatment or in survivorship, and had access to a palliative care provider who was integrated into the clinic. Data was analyzed using Wilcox ranked sum test and linear mixed-effects model testing. Results: Of the 31 patients (median age 29 years, range 18-43) who completed surveys, 25 (80%) completed surveys at 6 months; 48% were female, 58% were white, 16% lived alone, 28% were single, 37% had children, 54% completed college, and 35% had an annual household income ≥ $75,000. Phases of care included 52% on intensive frontline/salvage treatment, 19% in maintenance (i.e. lower intensity) therapy, 16% as recent stem cell transplant (SCT) recipients (< 1 year since date of transplant), and 13% in survivorship. Overall, ESAS scores among patients were similar regardless of care phases; however, patients on frontline/salvage therapy reported higher fatigue than those in maintenance (p = 0.01). Moderate-severe symptoms (defined as ESAS > 3), including tiredness, anxiety, poor appetite, and poor feeling of well-being, were reported regardless of phase of care. At 6 months, there was no significant change in BSI-18 scores compared to baseline, while tiredness (p = 0.02), depression (p = 0.01), and constipation (p = 0.02) improved; no ESAS scores worsened. Age ≥ 30 was associated with worsening anxiety (p = 0.01) at 6 months vs baseline, while no statistically significant differences in ESAS scores were observed among race, education, relationship status, presence of children, living arrangement, or income. Conclusions: AYA patients with hematologic malignancies experience high symptom burden independent of demographic characteristics or phase of care. These findings highlight the need for standard symptom screening at each visit and the importance of incorporating supportive care throughout the continuum.
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Key words
hematologic malignancies,high symptom burden,adolescents,young adults
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