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CLL Life

by Anonymous

06 July 2011 at 14:11

Quality of Life research and cancer

While researching how much work is going into Quality of Life research in cancer and what may relate to CLL. These bodies' sites are now in my reading list. Perhaps others can provide some CLL specific organisations and articles?? A naive question how many of these organisations have any teeth?? I need to read up on UK bodies, any suggestions?


Perhaps this recent colourful article Depression in cancer patients and their caregivers http://updates.clltopics.org/3654-depression-in-cancer-patients-and-their-caregivers has prompted me to gain a little more understanding of what really is going on in this field and what has been achieved to date.

"Your local oncologist told you CLL was the “good cancer” to have, you should therefore go home and be happy.

Did your spouse heave a huge sigh of relief and quit worrying forever more? Did your kids lose that scared look and go about their happy days of childhood? Did you buy that line, yourself? If you did, you are made of sterner stuff. Or you have your head stuck in the sand or some place else where the sun does not shine. Most of us smelled a rat right away. How can an “incurable cancer” be a “good cancer”? This kabuki dance of switching from “Watch & Wait” when nothing much happens to life threatening emergencies that leave you breathless with anxiety – how does one cope with that kind of mind-bending transition?"
 

http://www.clltopics.org/Alert/direct_display_alert.php?reqnum=253
 
From the  2007 abstract:
 
"The effects of CLL on QOL appear to differ from that of other malignancies with a more marked impact on emotional QOL. Research identifying efficacious psycho-oncologic support interventions for patients with CLL is needed"
 
I'm sure there is more since this date, any offers?

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The EORTC European Organisation for Research and Treatment of Cancer.



http://groups.eortc.be/qol/index.htm



"Quality of Life assessment in cancer clinical trials provides a more accurate evaluation of the well-being of individuals or groups of patients and of the benefits and side-effects that may result from medical intervention.

These pages aim to give an overview of the activities of the EORTC Quality of Life Group and the Quality of Life Department."



The Quality of Life Group http://groups.eortc.be/qol/qolg_history.htm has five aims:

To develop reliable instruments for measuring the quality of life of cancer patients participating in international clinical trials;
To conduct basic research in the methodology of QOL assessment;
To advise the EORTC about the assessment of the multidimensional aspects of patients' quality of life as a measurable outcome of cancer treatment;
To advise on the design, implementation and analysis of QOL studies within EORTC trials, in collaboration with the Quality of Life Department at the EORTC Headquarters;
To contribute to teaching/training initiatives to promote the EORTC approach to Quality of Life Assessment e.g. through preparation of teaching material, oral presentations, etc. in collaboration with the EORTC Quality of Life Department.
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Other important links:
ASCO
American Society of Clinical Oncology
http://www.asco.org

Cancerworld
The online world of Oncology
http://www.cancerworld.org/

CHES
Computer-based Health Evaluation System
http://www.ches.at

ESMO
European Society for Medical Oncology
http://www.esmo.org/

EuroQol
EuroQol group which provides the EQ5D
http://www.euroqol.org/

FECS
Federation of European Cancer Societies
http://www.fecs.be/emc.asp

IARC
International Agency for Research on Cancer
http://www.iarc.fr/

ISOQOL
International Society for Quality of Life Research
http://www.isoqol.org/

ISPOR
International Society for Pharmaeconomics and Outcomes Research
http://www.ispor.org/

MASCC
Multinational Association of Supportive Care in Cancer
http://www.mascc.org/

PROBE
Patient-Reported Outcomes and Behavioural Evidence
http://www.eortc.be/probe/

PROQOLID
Patient-Reported Outcome and Quality of Life Instruments Database
http://www.qolid.org/

OLGA
The On-Line guide to Quality of Life Assessment
http://www.olga-qol.com/

Nick :D



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