EHA SWG “Symptoms and Quality of Life” Survey – please take part!

26 May. 2015

FOR THE ATTENTION OF MDS PATIENTS

Please find below information about the new and exciting research project in quality of life of people suffering from haematological malignancies. Please help ensure MDS patients are sufficiently represented and take part as soon as possible, the results are needed very soon!

 

“The European Haematology Association Scientific Working Group (EHA-SWG) ‘Symptoms and Quality of Life’, is undertaking a study to investigate the symptoms and impacts associated with haematological malignancies as well as their treatments. In addition, the information collected will be used to develop a novel questionnaire to measure symptoms and quality of life in haematological malignancies such as MDS. It is envisaged that this study will lead to a better understanding of the experience and needs of patients in relation to their illness in routine clinical practice. Further, this offers an opportunity to involve patients in treatment decision-making more systematically, overall leading to improved care for patients with haematological malignancies.

This study has already received ethics approval by the NRES Committee South West – Central Bristol. Undertaking the study requires gathering information from individuals with haematological malignancies such as MDS, on their experiences of living with their condition. As such, I would like to invite you to take part in this study. Before you can make up your mind on whether to take part, it is important for you to understand why this research is being done and what it will involve. Please take time to read the information sheet (click here to see) provided. We cannot promise that the study will help you directly, but the information that we get from this study may help improve the care provided to other patients with your condition. This may be completed on several sittings.

In brief, your participation in this study will not involve any clinic visits. You will be asked to complete an online survey (with mostly open ended questions), which requires 45 minutes to 1 hour to complete. The survey includes questions about symptoms and impacts you have experienced as a result of your condition.

All information you will provide will be treated as confidential. Results of analysis of all information collected will be presented at international scientific conferences and published in scientific journals. Such results will not include your name or any other personal information.

The online survey can be accessed by visiting the following website: https://surveys.eu.qualtrics.com/SE/?SID=SV_bxba7sVJGiufnwh

If you have any questions regarding the survey, please contact Paul on 07768529783 or qol@eha-swg.com or Prof Sam Salek on 07763574022.

Yours faithfully”

Paul Kamudoni
Study Coordinator
EHA-SWG “Symptoms and Quality of Life”
106 Shepherd’s Bush Road
W6 7PD
London