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.

ALAN conducted a multi-country survey to gather information on the experiences, QoL and symptoms of adults (16+) with three different types of acute leukemia: acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL) and acute promyelocytic leukemia (APL).

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.

Project objectives and scope

This survey comprised 99 items, designed from a literature review of quality of life 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.

The core focus of the questions were around health-related quality of life focusing on the effects of healthcare, illness and treatment on quality of life. Additionally, we developed a short section within the survey that looked at the wider patient and caregiver well-being looking at the wider burdens of living and coping with acute leukemias. HM-PRO, an instrument designed to measure patient-reported outcomes in those with hematological malignancies, was incorporated into the study for assessing quality of life and symptoms. This consists of: Part A (impact/quality of life); and Part B (signs and symptoms). A higher score in each part represents greater (negative) impact on quality of life and symptom burden.

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. Some of the results were already presented as poster or oral presentations at hematology meetings and congresses. More will be presented during this year. If you would like to find out more about the results of the survey, check our publication section www.acuteleuk.org/publications

Now that the survey is completed, we are also looking to have the analysis and results published in professional medical journals.

If you would like to find out more about this project, please contact us