Investigating the Quality of Life of Patients with Acute Leukemia, with a Focus on Age and Patient-Reported Experience

Background The Acute Leukemia Advocates Network (ALAN) conducted a multi-country survey to gather information on the experiences, quality of life (QoL) and symptoms of adults (16+) with acute leukemia [acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL) and acute promyelocytic leukemia (APL)]. Aims To examine which factors are most associated with differences in QoL and symptom burden (measured by HM-PRO scores), focusing here on age and patient-reported experience. Methods This survey comprised 99 items, designed from a literature review of QoL and acute leukemia followed by input from clinical and patient advocacy experts. The study material was translated (9 languages) and promoted via patient advocacy groups from March 1, 2019 to November 29, 2019. HM-PRO, an instrument designed to measure patient-reported outcomes in patients with hematological malignancies, was incorporated into the study for assessing QoL and symptoms. This consists of: Part A (impact/QoL); and Part B (signs and symptoms). A higher score in each part represents greater (negative) impact on QoL and symptom burden. Q6 of the survey asked respondents to report their year of birth. Q9 of the survey provides a measure for disease state: undergoing treatment, in remission following treatment or relapsed following treatment. It was hypothesised that patients with a worse experience in each of the following areas would report a worse overall QoL: management by healthcare professional of physical symptoms and side effects (Q13) and emotional impact (Q14); physical and mental health (Q15), information from healthcare professionals (Q16), ability to perform meaningful activities (Q17) and well-being of carers, friends and family (Q18). Spearman correlation analysis was used to determine the direction and strength of relationships between the measures. Wilcoxon rank-sum, Chi-squared and Kruskal-Wallis rank test were used to examine the differences between groups. Multivariable linear regression, with interaction terms was used to investigate the relationships between the questions and the tumour groups. Results There were 552 respondents. Patients self-reported their acute leukemia diagnosis - 332 AML, 139 ALL and 81 APL. There was no overall significant difference between Part A (p=0.55) and Part B (0.23) HM-PRO scores for different acute leukemia types. Of these, 158 were aged 16-40, 240 were 41-60, 150 were 61-87 and 4 did not answer this question. The results suggest a signific