UK CLL Forum, UKCLLFORUM

Quality of Life research and CLL

Topic Made On: Jul 06, 2011 02:39pm
Nick

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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 also need to read up on UK bodies, any offers?

Perhaps Chaya's 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




Replied On: Jul 07, 2011 03:29pm
Venceremos

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Posts: 42
Another informative piece by Nick. I've recently borrowed a book from a friend called CHI KUNG Cultivating Personal Energy by James MacRitchie. I think we could all use some Chi. I'm slowly but surely moving towards a spirtual approach to my disease which could include Chi Kung.



Replied On: Jul 08, 2011 11:47pm
Nick

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Hope i didn't bore? Anything that allows us to find peace and cope with the "mind bending" prospect of living with this disease as it follows it's course gets my vote!!! Developing ourselves so we grow as people and taking on the new skills necessary, has to be one way.

Gardening is my form of meditation in motion, but I'm growing to have a read of James MacRitchie's book. Cheers



Replied On: Nov 18, 2011 01:26pm
Nick

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Hi ALL

This on line resourse is for all patients and covers just about every condition we live with, the Cancer section is divided into different disease groups, I have picked leukaemia and highlighted some info for CLLers.

“The Health Experiences Research Group at the University of Oxford, assessed as a ‘5-star’ research department by the last Research Assessment Exercise (RAE), uses rigorous and systematic research methods to sample, collect and analyse interviews with individuals of all ethnic groups over the age of sixteen. These methods provide a high quality evidence-based approach to patient experience and ensure that a full range of patients’ perspectives are analysed in terms of what someone might expect to experience when diagnosed with a particular condition or illness. More recent studies have focused on broader health and personal issues, from both the individual’s perspective and that of their carers and families”

Patients CLL experiences discussed at http://www.healthtalkonline.org in brief video snippets are perhaps the easiest way to find out how the disease affects others.

In the leukaemia section; http://www.healthtalkonline.org/Cancer/Leukaemia perhaps two topics jump out Watch and wait and Living with the symptoms of CLL ,these are our bread and butter. There are many shared stories on a great range of other topics we experience daily with CLL life.

Understanding how different the disease is in each of us and that we all react differently makes CLL a difficult topic to understand without the medical jargon. Hearing others being able to share their our own ways of coping with things and sharing lessons they have learnt, is one of the most helpful ways of reaching some understanding.

When you look at the list of people under Credits you can see how many leading names in UK CLL medicine and support have been involved in this research and are on the advisory panel behind this project. This is an exciting approach to assisting patient understanding and raising our profile in the eyes of the medical profession as well.

The publication in Pubmed of the abstract from their recent study finally seems to put in print much of what we experience from diagnosis and details many of the shortcomings we experience when dealing with the medical profession.

http://www.ncbi.nlm.nih.gov/pubmed/21883563

Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor-patient communication.

Evans J,Ziebland S, Pettitt AR. Health Experiences Research Group, Department of Primary Health Care, University of Oxford, Oxford Royal Liverpool and Broadgreen University Hospitals NHS Trust, Liverpool, UK

Where and how this information will be used I don’t know. I am sure many will now write about it. Chaya at CLL topics has in her colourful way: http://updates.clltopics.org/4085-incurable-invisible-and-inconclusive



Replied On: Nov 19, 2011 02:41pm
Nick

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Hi again

Thought it may help if I posted more direct information on the patient study. This is written in English, not "medi Speak", If you steer away from reading this stuff. Try to read this one, you may even wish to print it out for others.

It seems all stages of living with CLL can be an emotional rollercoaster. Any information that helps us, those that support us and the medical profession understand what we are going through is important in my book. Maybe In time it may help us and our loved ones gain a little more Psychological support, understanding and compassion when we need it?

More direct links to the paper.

The Health Experiences Research Group, website: http://www.herg.org.uk/

The PDF download of the complete paper.

Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor-patient communication.


http://www.herg.org.uk/publications/2011/incurable-invisible-and-inconclusive-a-qualitative-study-of-watchful-waiting-for-c

or
http://tinyurl.com/c2drtol






Replied On: Nov 21, 2011 01:07am
Venceremos

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Posts: 42
Cheers Nick, i've just done the PDF download.



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