Research Survey on Quality of Life in patients with Myelodysplastic Syndromes

 

In 2012 the MDS UK Patient Support Group began the very important endeavour of systematically assessing the needs of patients suffering from Myelodysplastic Syndromes in the UK.

“UK MDS patients – Assessing the needs for support” is the largest UK-specific study ever to focus exclusively on patient experience, Quality of Life, and needs in MDS.

The study will help us better understand better impact of MDS on your life and will evaluate the services provided to you, both by the NHS and by patient organisations. The ultimate goal is to improve the support and care offered to you - the MDS patient.

To do that, we have designed a comprehensive survey, which considers all major aspects of your patient experience throughout your MDS journey.

In October 2014 we published the first preliminary results. See the preliminary results here.

Informed by the first phase of the study, we have further improved our questionnaire and methodology and are now actively recruiting participants.

All MDS patients in UK are invited to take part

We need as many responses as we can get to ensure the success of this vital project!Help us improve the services offered to you and other patients, now and in the future. Please complete our survey today!
See the preliminary results here

37 UK treatment centres have already received our surveys, together with their supply of our latest Newsletter (6th edition), and further 50 of our members were approached by us directly and received our questionnaires by post. Please, look out for our newsletters at your local treatment centre. If you find a questionnaire inside it, or if you receive the questionnaire from us by post, please complete it and return back to us, using the pre-paid envelope provided.
More treatment centres and MDS UK members will receive our questionnaires in future, as we will continue distributing them and collecting data until 2018!

Information Sheet

If you have not received our questionnaire but would like to take part - you can! Please read our Information sheet first

MDS Survey

If you agree to take part, please download our survey or request a copy of our survey for completion to be sent to you by post

Use the contact details  to request our survey or to return the completed questionnaire.

We would also like to hear from those who can help hand out our newsletters with enclosed surveys to patients.

Please contact us if you know any MDS patients interested in taking part in our survey.

Tel: 020 7733 7558

UK MDS Survey
MDS UK Patient Support Group
Haematology – Bessemer Wing
King’s College Hospital
Denmark Hill
London, SE5 9RS

projectworker@mdsatientsupport.org.uk

Frequently Asked Questions About the survey

What is our survey about?

Our survey was designed to consider all major aspects of your patient experience throughout your MDS journey. It is also an assessment of your needs and Quality of Life. The questionnaire comprises the following sections:
- Demographic questions: these questions are about you and your background i.e. age, gender, education status.
- MDS diagnosis process and information: these questions are about your route to diagnosis and the information you were provided about MDS.
- Your MDS subtype and MDS treatment: these questions are about your knowledge of MDS as a disease, your specific type of MDS and the treatment that you received.
- Practical impact of MDS: these questions are about the practical impact that living with MDS has on you and those supporting you, such as travel to hospital and extra assistance required.
- General support for MDS patients and carers: these questions are to identify and evaluate different sources of support available to MDS patients and their families.
- Quality of life questionnaire (QOL-E v. 2, 2002): this is the only existing validated instrument designed specifically for MDS. Your answers will help evaluate the overall impact of MDS on your quality of life, and will support the use of this very important measure in research and clinical settings.

Why is the survey being conducted?

The survey is being conducted for 5 main reasons:

- to learn about your patient experience
- to learn about the impact of MDS on your life
- to evaluate the services offered to you
- to identify any health inequalities amongst different subgroups of MDS patients
- to identify and follow changes over time to the services offered to MDS patients

How will we use the data?

The data collected will assist us in improving the services we offer to MDS patient and their families, as well as the clinical services provided to MDS patients generally. More specifically, we intend to use the data for:

- developing programmes to assist MDS patients and families
- educating physicians, nurses and allied healthcare professionals
- working with governmental and private agencies/companies
- collaborating with other charities and patient groups

The anonymised data may also be used for future publications and may be shared with other researchers interested in MDS Quality of Life research.

Any publications resulting from the survey will be made available via the MDS PSG website and on individual request.

How have we used the findings so far:

Existing findings have already been used for the benefit of the MDS community. So far your responses have contributed to improving our services, as well the development of new resource materials for MDS patients, including anonymous survey quotes in our new booklet on MDS. This is merely the beginning, and more respondents are needed if our findings are to make a real impact.

How can you take part?

As mentioned above, we are recruiting participants using different methods to ensure the responses we get represent the entire population of MDS patients in UK. For that reason we recruit participants:
- from a list of of our members - if you have received a copy from us directly, please return the completed questionnaire to us, using the pre-paid envelope
- by sending out surveys together with our newsletters to pre-selected treatment centres - please take part by completing the questionnaire enclosed inside a newsletter picked up at your local treatment centre
- by asking new patients to come forward and request the survey - download our survey or request a hard-copy copy for completion
- through our existing contacts and network - please contact us directly if you can hand out our newsletters with enclosed surveys amongst MDS patients.

Will your responses be confidential?

Our questionnaire is designed to be filled in anonymously. There is no need to add your name or contact details. Should you be emailing or posting the completed questionnaire back to us, the document will be anonymised prior to the data being entered in our database. At no point will your answers be linked back to you. Neither will you be identifiable from any publications arising from this research.

We also guarantee that if you decide to participate, the support you receive from MDS UK Patient Support Group will not be affected, nor the treatment you receive from your hospital or GP.

This research survey has been reviewed and approved by the King’s College Research Ethics Committee (KCL Ethics Ref Nb - BDM/11/12-32 UK MDS).

What is our survey about?

Our survey was designed to considers all major aspects of your patient experience throughout your MDS journey. It is also an assessment of your needs and Quality of Life. The questionnaire comprises of the following sections:
- Demographic questions: these questions are about you and your background i.e. age, gender, education status.
- MDS diagnosis process and information: theses questions are about your route to diagnosis and the information you were provided about MDS.
- Your MDS subtype and MDS treatment: these questions are about your knowledge about MDS as a disease, your specific type of MDS and the treatment that you received.
- Practical impact of MDS: these questions are about the practical impact of living with MDS on you and those supporting you, such as travel to hospital and extra assistance required.
- General support for MDS patients and carers: these questions are to identify and evaluate different sources of support available to MDS patients and their families.
- Quality of life questionnaire (QOL-E v. 2, 2002): this is the only existing validated instrument designed specifically for MDS. Your answers will help evaluate the overall impact of MDS on your quality of life, and will support the use of this very important measure in research and clinical settings.

In the meantime, please see below regular updates on the study and periodic release of preliminary findings:
What do UK MDS patients say about the information they receive at diagnosis?

What can you do to ensure you receive the information you need?

Find out about the Question Prompt List, put together by French and Australian researchers, to aid the communication between MDS patients and their clinical team.

The list comprises of over fifty questions which were found to matter most to MDS patients and family members in Australia and France.

You can use this list to help identify questions to ask in your next consultation to better understand your diagnosis and treatments and consequently to make more informed decisions about your health care.

Click here to see the QUESTION PROMPT LIST and find out more.

Please don't hesitate to contact us directly if you have other questions or need further information about the survey:

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