Do you believe that doctors and the NHS should do more to improve the quality of life of patients and people with a disability?

If you do, one problem is that the medical profession, managers, civil servants and politicians cannot always be expected to know what you (and everyone else) mean when you use the phrase ‘quality of life’.

Head and neck cancer patients are invited to give their viewpoints on the subject of their quality of life to a study taking place in England and Wales.

The QALYity Project (an alliance of prestigious patient groups, medical professionals, academics, and journalists) is conducting the study in order to develop an index that can measure how effective each individual medical treatment or form of care/ support is at improving the quality of life of people with a long-term medical condition (or a disability)—as determined by the individuals themselves, not by clinicians. The results of the survey, and the tools that emerge from it, will be made publicly available, will be submitted for peer review, and will also be presented to the National Institute of Health and Clinical Excellence (NICE), the government-funded body that decides which treatments and care should be paid for by the NHS.

A December 2006 QALYity Project survey collected the views of over 270 patient/disability/carer organisations throughout England and Wales. These groups have kindly provided a wealth of potential definitions of the phrase ‘quality of life’ [results of the December 2006 quality-of-life survey can be read at the above web address]. But people are different, and not all of the December 2006 definitions are likely to apply to everyone. This second questionnaire aimed at head and neck cancer patients should allow these individual differences to be collated.

Please input your opinions to this short online survey questionnaire on your quality of life by clicking on the following weblink: QUALITY OF LIFE SURVEY FOR PATIENTS

The administration costs of this survey are being supported by an educational grant from NovoNordisk.

This message has been edited. Last edited by: Dr Vinod K Joshi,

Dear Dr Vinod, As a single person on my own, I just had to manage the best I could, I really got little or no help.
I had to put up with a great deal of negative imput; and I do feel that perhaps some people would have found it very hard to cope.

The first survey by the QALYity Project, December 2006-January 2007:
The QALYity Project sent a questionnaire to national, regional and local patient/health advocacy groups across England and Wales, exploring their opinions on the subject of patients' quality of life. 271 groups responded to the survey. For the results of the QALYity project's first quality-of-life survey, Click here.

The second survey by the QALYity Project, March 2007-September 2007:
During 2007, PatientView and HSCNews International each carried out a survey of patients on the subject of their quality of life. Generating responses from 3,471 patients, the two surveys together rank among the world's largest on the topic of patients' quality of life. They were also unique in being the first surveys ever in which patients themselves defined what constitutes their quality of life. The PatientView survey was conducted among patients in England and Wales on behalf of the QALYity Project, and ran from March-September 2007. Results are due to be released into the public domain by end-2007.