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CLL Life

by Anonymous

18 November 2011 at 12:42

Health experiences, watch and wait

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 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

take care

Nick



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