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

Authors

Zack Pemberton-Whiteley, Acute Leukemia Advocates Network; Leukaemia CareFollow
Samantha Nier, Acute Leukemia Advocates NetworkFollow
Jan Geissler, Acute Leukemia Advocates Network; LeukaNET e.V.Follow
Sophie Wintrich, Acute Leukemia Advocates Network; MDS UK Patient Support GroupFollow
Bregje Verhoeven, Acute Leukemia Advocates Network; Foundation HematonFollow
Rita O. Christensen, Acute Leukemia Advocates Network; LyLe Patientforeningenen for Lymfekræft Leukæmi og MDSFollow
Sam Salek, University of HertfordshireFollow
Esther Natalie Oliva, Azienda Ospedaliera Bianchi-Melacrino-MorelliFollow
Tatyana Ionova, National Medical Surgical Centre and Multinational Centre for Quality of Life ResearchFollow
Jennie Bradley, Quality Health Ltd, an IQVIA companyFollow

Publication Date

1-17-2023

Keywords

acute leukemia, quality of life, patient-reported outcomes, PROs, social functioning

Abstract

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 r² = 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.

Recommended Citation

Pemberton-Whiteley Z, Nier S, Geissler J, Wintrich S, Verhoeven B, Christensen RO, Salek S, Oliva EN, Ionova T, Bradley J. Understanding quality of life in patients with acute leukemia, a global survey. J Patient Cent Res Rev. 2023;10:21-30. doi: 10.17294/2330-0698.1951