Patient Experience Survey

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

The questionnaire is about diagnosis, care and treatment for leukemia.

Its purpose is to provide information to help us understand the key issues, experiences, and unmet needs for leukemia patients and their carers.

Taking part in this survey is voluntary and should take around 20 min to complete. 

Link to the survey – PATIENTS

The questions should be 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.

Once you click on the link you will be able to access the questionnaire in various languages (English, Brazilian Portuguese, French, German, Hebrew, Italian, Korean, Simplified Chinese, Spanish and Russian).

https://www.oc-meridian.com/IQVIAIF/completion/custom/default.aspx?slid=164&did=

Ready to use materials to promote the survey : https://drive.google.com/drive/folders/1loSahF7Rm0qAr1qZHp9LUmjgOUFL32jn

Link to the survey – CARERS/CAREGIVERS

To come in 2022.

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.