The questionnaire is about diagnosis, care and treatment for leukemia, with the purpose of provding information to help understand the key issues, experiences, and unmet needs for leukemia patients and their carers.

Rationale

In 2018, ALAN successfully ran the Global Quality of Life Survey, collecting over 500 responses from around the world. The results have been presented at numerous conferences as abstracts and posters and it informed our policy work.

This year, ALAN, CLLAN and CMLAN are collaborating to build a global picture of the experiences of people with ALL, AML CLL and CML and their carers, friends and family. Our aim is to understand the key issues, experiences and unmet needs for leukemia patients.

Objectives

• Highlight the key issues, experiences, and unmet needs for leukemia patients and their carers.
• Explore diagnosis, care and treatment for leukemia, collecting evidence in relation to experience and quality of life.
• Create further evidence to identify and communicate the varying levels of information, care and support available for patients and caregivers
• Aid patient advocates and advocacy groups to inform and influence stakeholder communities, industry, and policy makers.

2021 / 2022 Patients and carers survey

We had respondents from 2629 leukemia patients and 571 carers from 79 countries.

Report: 

Global Leukemia Experience Survey_Executive Summary

Global Leukemia Experience Survey_Full Report

Journal articles:

Assessment of impact of demographics, information provision and involvement in treatment decision on leukaemia patients QoL-primary analysis of global study data

Disease and treatment burden in patients with leukaemia family members partner perspective

2023 Patients and carers survey 

We had respondents from 2260 leukemia patients and 694 carers.

Report:

Global Leukemia Experience Survey 2023 Report

We have developped a new toolkit designed to support patients, advocacy organisations, and healthcare professionals.

The toolkit includes:

• Practical tools for patients, like wellbeing trackers to support their care journey
• A physician checklist to help deliver person centred care for people diagnosed with acute leukemia and their caregivers
• Insights into patient experience, including emotional, financial, and treatment-related challenges

 

The toolkit can be found here: acuteleuk.org/downloads/infog/?2746

 

We are working with Picker.

For more information about Picker, please visit www.picker.org.