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Measuring symptoms and quality of life in blood cancers

written by

Leukaemia Care, Charity

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The European Haematology Association Scientific Working Group “Symptoms and Quality of Life” is undertaking a study investigating the symptoms of blood cancers and their impact on patients’ lives. 

This information will be used to develop a questionnaire to measure symptoms and quality of life in blood cancers such as leukaemia, lymphoma and myeloma. It is hoped that this questionnaire will improve the understanding and involvement of patient experiences in decision-making and clinical practice. It is important to note that no identifying information is required and all of the information received will be treated confidentially.

The survey is involves a number of open-ended questions designed to allow you to elaborate on your experience and convey the messages that you feel are important to you; there are no right or wrong answers.

Whilst the survey is quite long – with an estimated time of between 60-90 minutes –you can choose not to answer questions that you feel are irrelevant to your situation, where you are unsure of the answer or that you simply do not wish to answer.

Although the survey has been designed primarily for patients, you may wish to respond on behalf of your friend or family member who has been diagnosed or based on your own perspective as a carer, friend or family member of somebody who has been diagnosed with a blood cancer.

If you wish to provide your experience and influence the development of this questionnaire, the survey is available online here