Paper Details

ABSTRACT

Background: Acute leukemia (AL) is associated with substantial symptom burden and impaired quality of life (QoL). The Global Leukemia Experience Survey was an online anonymous, multinational, carried out between August 2023 and January 2024 by Acute Leukemia Advocacy Network (ALAN), which aimed to collect patient-reported data on demographics, diagnosis, treatment experiences, and unmet needs. In addition, the HM-PRO, a patient-reported outcome measure for hematological malignancies, was included in the survey and analyzed to measure quality of life and symptom burden.

Methods: Respondents with AL who completed the HM-PRO were included in this analysis. Internal consistency reliability was assessed for the HM-PRO domains: Part A (impact), which summarizes Physical Behavior (PB), Emotional Behavior (EB), Social Well-Being (SW), Eating and Drinking (ED); and Symptom Scale (SS), Part B. T. The HM-PRO Score banding is: 0–7 'no impact' on a patient's QoL; 8–25 'a small impact'; 26–41 'a moderate impact'; 42–74 'a very large impact'; and 75-100 'extremely large impact on a patient's QoL. For Part B HM-PRO score 0-3 = 'no effect' of signs and symptoms on a patient's life, 4-16 = 'a small effect', 17-29 = 'a moderate effect', 30-65 = 'a very large effect' and score 66-100 = extremely large effect of signs and symptoms on a patient's life.  Differences between acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and acute promyelocytic leukemia (APL) were evaluated using chi-square and Fisher’s exact tests.

Results: A total of 641 patients were included in the analysis: 53% AML; 42% ALL; and 5% APL. Median age was 38 years (range 18–86), 56% were female, and median disease duration was 2 years (range 0-38). The HM-PRO showed excellent internal consistency across domains: Cronbach’s α was 0.925 for Part A, 0.872 for PB, 0.693 for SW, 0.915 for EB, 0.749 for ED, and 0.898 for SS.  Median (IQR) scores were 37 (22–53) for Part A, 21 (7–50) for PB, 33 (0–50) for SW, 50 (27–73) for EB, 50 (0–50) for ED, and 19 (8–33) for SS. Key concerns included future health, being a burden to others, sleep disturbance, anxiety, and fear of dying. Fatigue or low energy was the most prevalent symptom. Patients with ALL consistently reported the highest HM-PRO scores, indicating a greater overall disease impact. Mean Part A scores were 42 ± 24 (very large impact on QoL)  in ALL, 36 ± 21 (moderate impact) in AML, and 33 ±19 (moderate impact) in APL, and SS scores with moderate impact on patients' life were 26 ± 20, 21±18, and 22 ± 14, respectively. Patients with ALL had significantly worse PB scores (p=0.003), ED scores (p=0.035), and Part B scores (p=0.010). More APL patients reported no impairment in PB compared with AML and ALL patients (56% vs. 32% vs. 28%, respectively), whereas ALL patients had the highest proportion reporting a very/extremely large PB impact (40% vs. 26% in AML and 22% in APL; p=0.003). A very/extremely large impact on ED was more common in ALL and APL than in AML (62% and 56% vs. 46%, respectively; p=0.035). Sign and symptoms (Part B) scores were lower in APL patients, with only 4% reporting a very/extremely large impact compared with 25% of ALL and 16% of AML patients (p=0.010). Similarities for SW and EB were observed across subtypes.

Conclusions: AL is associated with substantial multidimensional patient-reported burden, particularly in ‘emotional behavior’, ‘fatigue’, and ‘appetite/eating’. The HM-PRO demonstrated good reliability and homogeneity between the domains (i.e. measuring the same concept), in this AL population and was able to capture differences across AL subtypes. Patients with ALL reported the greatest overall impact. These findings support the routine integration of PRO assessment into AL care to better identify unmet needs, guide supportive care, and inform subtype-specific, patient-centered treatment strategies.