Understanding Quality of Life in Patients With Acute Leukemia, a Global Survey.

Purpose: The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.
Methods: ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients' demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate relationships between HM-PRO scores and the other factors.
Results: Of 552 respondents from 42 countries, 332 had acute myeloid leukemia, 139 had acute lymphoblastic leukemia, and 81 had acute promyelocytic leukemia (survey data collected in 2019). Younger age, female gender, and lower income were all significantly negatively associated with QoL. Weak or moderate correlations were observed between overall support, management, and impact of treatment and diagnosis of acute leukemia. Feeling isolated and having reduced ability to carry out physical or enjoyable activities were the most important individual factors, while the best predictors for QoL impact were age, gender, and income (model r ² =0.16, complete case n=449).
Conclusions: Findings indicated key factors, particularly age, gender, and socioeconomic state, that clinicians responsible for the care of patients with acute leukemia should be aware of when designing support strategies. The importance of social functioning in relation to patient QoL also should be included in considerations.
Competing Interests: Conflicts of Interest Z.P.W. reports: employment by Leukaemia Care; equity ownership of Patient Evidence; consultancy for Acute Leukemia Advocates Network (ALAN), Amgen, Astellas, Bristol-Myers Squibb, Celgene, Incyte, Janssen, Novartis, and Pfizer; advisory board membership for ALAN and CML Advocates Network; speakers bureau for Amgen, Bristol-Myers Squibb, Gilead, Jazz, Novartis, and Pfizer. S.N. reports: consultancy role for ALAN. J.G. reports: advisory roles and consultancy on patient engagement to Amgen, Alnylam, Bayer, Biomarin, Boehringer, Gilead, Janssen, Novartis, Pfizer, Roche, Servier, Sanofi, Takeda, and UCB; board membership of ALAN, CML Advocates Network, Leukaemia Patient Advocates Foundation, and LeukaNET. S.W. reports: board membership of ALAN; MDS UK organizational grants from and/or honoraria for advisory board role from Novartis, Janssen, and Takeda. B.V. reports: board membership of ALAN. R.C. reports: board membership of LYLE; advisory roles and consultancy for Bristol-Myers Squibb, Takeda, Roche, Pfizer, Janssen, Novartis, and Autisme 4700DK. S.S. reports: educational grant from GSK plc, Merck Group, and Dr Wolff; travel support and consultancy from Agios; joint copyright holder of HM-PRO. E.N.O. reports: advisory roles and consultancy for Bristol-Myers Squibb, Novartis, Amgen, Appelis, and Alexion; speakers bureau for Bristol-Myers Squibb and Novartis. T.I. reports: advisory roles and consultancy for Bristol-Myers Squibb, Takeda, and Amgen; principal investigator in sponsor-initiated studies; speaker bureau for Takeda. J.B. reports: employment by IQVIA.
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