Global Quality of Life Survey

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 acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (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 families and caregivers, 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 heterogenous; 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 gruelling 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.

Global Quality of Life

There is an urgent need globally for a detailed survey of patients and caregivers to generate current data, understand issues, and information about the current and emerging landscape, experiences, and QoL and wellbeing of acute leukemia patients and caregivers.

This information is required to:

  • help identify and communicate the varying levels of information, care and support available for patients and caregivers
  • help patient advocates and advocacy groups to inform and influence stakeholder communities, industry and policy makers
  • support education and information tools and programmes for acute leukaemia HCPs

 

The ALAN steering committee is developing a multi-country QoL/patient-experience acute leukaemias survey. This e-survey will be an international online survey via advocacy networks and social media to obtain patient-generated data on QoL during acute leukemia treatment (ALL and AML), including transplant, and differences between inpatient and outpatient care. The landscape audit will be conducted by country; one organization from each country would lead data collection feeding into master database for analysis and data reporting.

Project objectives and scope

The survey will seek to ask a range of questions of acute leukaemia patients and their caregivers around their experiences of the disease from initial diagnosis to through treatment and recovery period.

The design, distribution, analysis will all be undertaken to the highest quality professional standards and methodologies, with the full collaboration and validation from patients, patient advocacy groups, and acute leukaemia experts.

The core focus of the questions would be around health-related quality of life (HRQOL) focusing on the effects of healthcare, illness and treatment on quality of life. Additionally, we develop a short section within the survey that looked at the wider patient and caregiver wellbeing looking at the wider burdens of living and coping with acute leukaemias.

The survey results will be used to help understand the key issues, experiences, and unmet needs for patients and caregivers throughout the journey with acute leukaemia

Once the survey is completed, we will look to have the analysis and results published in professional medical journals and presented as poster or oral presentations at haematology meetings and congresses.

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