Global Quality of Life Survey

Due to recent changes in how acute leukemia is treated, there is an urgent need for greater understanding of quality of life (QoL) at different points in the acute leukemia patient journey.


We 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.

Background to project

Acute leukemia is a malignant disease of the blood in which a particular type of a blood cell, typically at an immature stage of development, rapidly expands in the blood or bone marrow. The two most common subtypes of acute leukemia are ALL and AML.

  • ALL is caused by the expansion of immature lymphoid precursors, and typically affects young children and older adults.
  • In AML, it is the precursor cells of the bone marrow that rapidly multiply. This form of acute leukemia is the most common in adults. Acute leukemia is an aggressive disease; progresses extremely rapidly without treatment; and has historically been associated with poor outcomes in adults.


This acute and life-threatening disease puts a significant burden on patients and their families, who can experience extremely high stress levels, as well as negative psychological and physiological effects due to the aggressive nature of the disease.

Acute leukemias are a highly heterogeneous; within AML and ALL, there are numerous subtypes, which are defined by the identity and developmental stage of the affected cells. The prognosis and risk associated with each sub-type is often determined by the genetic mutations. Further complicating the treatment of this disease is the fact that the cells may continue to change their genetic characteristics as the disease progresses.

A number of promising new treatments are becoming available that use this diversity to target specific mutations that drive disease progression in leukemic cells.

While targeted therapies focus on what differentiates the leukemic cells, other approaches aim to modulate more fundamental processes that do not depend on specific genetic mutations, for example, molecules that target apoptosis pathways. The development of non-chemotherapy treatments is a promising advancement, particularly for elderly patient groups who may not be fit enough to undergo grueling treatment regimes, and strategies for combining different therapies, as well as novel technologies to monitor disease progression and response to medicines, have great potential for making a real difference in the treatment of this devastating disease.


We 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.

Zack Pemberton-Whiteley is explaining how the Global Quality of Life survey in acute leukemia was designed, using the HM-PRO, a validated hematology specific patient-reported outcome tool.

Univariate and multivariable statistical analysis was used to investigate relationships between HM-PRO scores and the other factors.


“The survey results are and will be used to help understand the key issues, experiences, and unmet needs for patients throughout their journey with acute leukemia.”


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).

View / Download the full report: ALAN Global Quality of Life survey_ Final report 2023


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.

Available publications