Leukemia Patient and Carer Experience Survey

This survey was run by the Acute Leukemia Advocates Network (ALAN) in partnership with the CLL Advocates Network (CLLAN) and CML Advocates Network (CMLAN).

The questionnaire was 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 has greater aspirations, and has partnered with CLLAN and CMLAN 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

  • To identify priority topics, assess areas of change (since the ALAN 2019 survey) including (but not limited to) COVID.
  • Create further evidence about patient experience and quality of life at different points in the acute leukemia patient journey.
  • Include a carer cohort – to evidence the impact from their perspective
  • Aid patient advocates and advocacy groups to inform and influence stakeholder communities, industry, and policy makers – enabling evidence-based advocacy.
  • Help to identify and communicate the varying levels of information, care and support available for patients and caregivers.

PATIENTS SURVEY – NOW CLOSED  

The questions was answered by the person who has been diagnosed with leukemia. If help is given to complete the questionnaire, the answers should be given from the point of view of the person diagnosed with leukemia – not the point of view of the person who is helping.

The survey is now closed and we are in the process of analyzing the data from 2629 leukemia patients from 79 countries. THANKS FOR PARTICIPATING !

CARERS/CAREGIVERS SURVEY – NOW CLOSED 

The questionnaire was answered by the person who are suppporting people with a diagnosis of leukemia.

The survey is now closed and we are in the process of analyzing the data from 577 leukemia carers from 79 countries. THANKS FOR PARTICIPATING !