Research project on Quality of Life - participants needed

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sophie
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Research project on Quality of Life - participants needed

Post by sophie » 01 Dec 2010 19:45

Dear all,

we are helping out on an important research project on Quality of Life in MDS.
We are looking for 30 people with low-risk or intermediate 1 type MDS to take part in a 60 minute face to face interview with an experienced researcher in that domain.

This research will be of great help to illustrate the impact of treatment on quality of life in MDS. The result of this type of research is of great importance for regulatory authorities such as NICE and authorities at European level too.

We hope many of you will be able to take part.
Please call or email me for the full information sheet - or if you have any questions.
Participants will be compensated for their time.

Thank you.
Sophie
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Research project on Quality of Life - participants neede

Post by sophie » 02 Dec 2010 14:52

Thank you to the 6 people who have already volunteered to take part.
Please email me directly if you are interested:
mds-uk@mds-foundation.org

Thanks
Sophie
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
chris
Posts: 622
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Research project on Quality of Life - participants neede

Post by chris » 09 Dec 2010 15:05

Dear All

Just to let you know that I volunteered to take part and have just had my interview. The interviewer was very sympathetic and kind and I didn't feel at all uncomfortable doing it. If it helps to publicise the sorts of quality of life issues that MDS patients have, I feel it must be worthwhile - otherwise the disease will remain low profile and no research will be done into treaments and cures, nor will our medical supporters understand quite how difficult the diagnosis can be. I am sure they would be glad of more people offering to take part.

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
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Re: Research project on Quality of Life - participants neede

Post by janetstanford » 10 Dec 2010 02:15

chris
yes do agree would do myself but need to resolve other issues such as what type mds i have first, (need to see the doc)
i am not brave but do agree from my expierence that we need to advertise our condition every chance we get and get out there and make people aware we need research training cure (or at least a long term solution)

any brave members out there
janet
lynnee
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Joined: 08 Dec 2010 08:52
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Re: Research project on Quality of Life - participants neede

Post by lynnee » 10 Dec 2010 08:52

Dear Sophie I'm new to the site, have just posted two replies this morning. I think I would be very interested in being interviewed about my low-risk MDS (as far as I'm aware it is low risk?) If you see my postings you will pick up a little of my experience.. I often have difficulty coming to terms with my MDS, I was diagnosed 10 yrs ago and it seemed everyone panicked. Blood transfusions and a perfect match with my brother was found for transplant... however after all that everything settled down and was maintained by eprex (which stopped working) now Aranesp injections... I haven't joined before because I'm still here after 10 yrs and feel I should just crack on and there's nothing I could offer to other MDS sufferers who may or may not have a more serious condition than myself.. Saying that MDS has made a marked difference to my lifestyle and I've had to adapt constantly when my body starts to suffer.. You tell yourself all will be well but actually nobody really knows. Would I be a suitable candidate for an interview. Looking forward to hearing from you. Please look at my other postings to see my queries. Take care, its great to talk! Lynne
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
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Re: Research project on Quality of Life - participants neede

Post by janetstanford » 14 Dec 2010 21:47

lynnee

ten years with mds trust me you have a lot to share with us all valuble advice and expierence a lot to offer i am sure :)

i would do it myself but as i say type??? i thought i wuld have known this now but had a mix up :? with dates for hospital but i am there on the 21st to see the doc so should have some answers then, mind this is the day before transfusion when bloods will be approx 8.5ish and as you know concentration is out the window at this level :?

take care janet
chris
Posts: 622
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Research project on Quality of Life - participants neede

Post by chris » 16 Dec 2010 08:39

Hi Lynne and Janet

Janet - I don't think for the purposes of the interview that you need to know details of the type of MDS you have. In fact, that could be part of the issues that you talk about in terms of how MDS has affected you - i.e. how concerned/ worried you feel about asking your medical advisors for more details. We are all different and some people want to know more than others. Hope your transfusion on 22nd fills you with Christmas energy!!

Lynne

Thanks for sharing your experiences and I hope Sophie will have contacted you by now. If not (and she is a very busy person and might not have time to read all the postings) you might want to e-mail her directly. Her contact details are under the Contact Us tab.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: Research project on Quality of Life - participants neede

Post by janetstanford » 16 Dec 2010 16:00

chris wrote:Hi Lynne and Janet

Janet - I don't think for the purposes of the interview that you need to know details of the type of MDS you have. In fact, that could be part of the issues that you talk about in terms of how MDS has affected you - i.e. how concerned/ worried you feel about asking your medical advisors for more details. We are all different and some people want to know more than others. Hope your transfusion on 22nd fills you with Christmas energy!!

Lynne

Thanks for sharing your experiences and I hope Sophie will have contacted you by now. If not (and she is a very busy person and might not have time to read all the postings) you might want to e-mail her directly. Her contact details are under the Contact Us tab.

Best wishes

Chris
thanks for that chris yes an issue has been pointed out there think it is about information and communication not knowing enough to be able to answer what you believe the questions may be about ?? but as you have completed the questionaire you at least have a general idea on what will be asked, people can be unsure but maybe more posts from those who have been questioned may encourage more to volunteer
it has me just e-mailed sophie
transfusion on the 22 nd yes i will be full of hb and least for a few days i will feel normal
take care janet
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: Research project on Quality of Life - participants neede

Post by janetstanford » 19 Dec 2010 18:06

hi chris
have heard back from sophie on quality of life interview,and you do need to know type of mds and i may find this out on the 21st, so i may or may not be able to take part???

janet
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Research project on Quality of Life - participants neede

Post by chris » 30 Dec 2010 16:03

Hi Janet

Were you able to ask the question of your doctor on 21st? I do hope you were able to get some more information as I feel sure you would find it helpful.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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