See what's happening in the Community

You are not logged in.   Log In


What is a blog?

A blog is an online journal. Read other member's blogs or start one of your own and share your thoughts.

Find A Blog

Read our blogs and post your own comments

Meet the team

As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

Psychologists and experts from other Maggie's Centres and partner organisations also facilitate some group and individual sessions.

Personal Blog

Selected Blog

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 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?"
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?


The EORTC European Organisation for Research and Treatment of Cancer.

"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 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.
Other important links:
American Society of Clinical Oncology

The online world of Oncology

Computer-based Health Evaluation System

European Society for Medical Oncology

EuroQol group which provides the EQ5D

Federation of European Cancer Societies

International Agency for Research on Cancer

International Society for Quality of Life Research

International Society for Pharmaeconomics and Outcomes Research

Multinational Association of Supportive Care in Cancer

Patient-Reported Outcomes and Behavioural Evidence

Patient-Reported Outcome and Quality of Life Instruments Database

The On-Line guide to Quality of Life Assessment

Nick :D

Registered Office: Maggie's, The Stables, Western General Hospital, Crewe Road, Edinburgh EH4 2XU   Registered Charity Number: SC024414
The Maggie Keswick Jencks Cancer Caring Centres Trust is a company limited by guarantee   Company Number: SC162451