Global Leukaemia Patient Experience Survey Now Open!

The global leukaemia patient experience survey has been created to build a global picture of the experiences of people with ALL, AML CLL and CML and their carers, friends and family and the aim is to understand the key issues, experiences and unmet needs for leukaemia patients.

In 2018, ALAN successfully ran the Acute Leukemia 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 have informed ALAN’s policy work. 

This year, ALAN has even greater aspirations and have partnered with CLLAN and CMLAN for the Global Leukemia Patient Experience Survey. The survey has been created in collaboration with the international patient advocacy community: Acute Leukaemia Advocates Network (ALAN), CLL Advocates Network (CLLAN) and CML Advocates Network (CMLAN), supported by Leukaemia Care in the UK.

The survey has been created to build a global picture of the experiences of people with ALL, AML CLL and CML and their carers, friends and family and the aim is to understand the key issues, experiences and unmet needs for leukaemia patients. The survey will collect key data on important areas of patient experience such as diagnosis, treatment, patient preferences, quality of life and also impact of the COVID-19 pandemic on patient experience and outcomes. This will provide an opportunity for international comparisons and will be quite key to identify how the UK is doing, to be able to understand/identify possible links between patient experience and UK outcomes. 

I am a leukaemia patient. What is the survey and how can I take part in the survey?

The questionnaire is about your diagnosis, care and treatment for leukaemia. Its purpose is to provide information to help us understand the key issues, experiences, and unmet needs of leukaemia patients. 

Taking part in this survey is voluntary and should take around 20 minutes to complete. The questions should be answered by the person who has been diagnosed with leukaemia. If help is given to complete the questionnaire, the answers should be given from the point of view of the person diagnosed with leukaemia – not the point of view of the person who is helping.

Your responses will be grouped with other respondents so that we can provide an overall set of data that will highlight the key issues. ALAN, CLLAN and CMLAN will only ever have access to aggregated survey data on overall results and anonymised comments. You won’t be identifiable in any published reports.

The survey can be accessed using the following links:

Web link: https://bit.ly/LeukaemiaPatientExperienceSurvey2021

Tablet link: https://bit.ly/TLeukaemiaPatientExperienceSurvey2021

Mobile link: https://bit.ly/MLeukaemiaPatientExperienceSurvey2021

If you have any queries about the questionnaire, please email: helpline@quality-health.co.uk 

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