Research: Quality of Life outcome measures

“At the recent NMSS/ECTRIMS International Conference on Disability Outcomes in Multiple Sclerosis, held on the 19th and 20th May in Washington DC, the talk that impressed me most was the one by Deborah Miller on the Neuro-QOL. So don’t go to sleep this is an important study.”
What is Neuro-QOL? 
Neuro-QOL is a clinically relevant health-related quality of life (HRQL) assessment tool. 
This study reports the psychometric results for the adult tools.
“Psychometric is simply a big word for the science of measurement; psycho is derived from psychology and is hangover from the field of psychology that developed the tools of measurement.”
“Who said the social sciences aren’t important? As important, if not more, than the physical sciences!”

“You may view this blog as social science experiment; which is why we are learning on the hoof.”
The Neuro-QOL measurement system provides item banks and short forms or questionnaires that enable patient related outcome measurement in MS research, minimizes patient burden and can be used to create multiple instrument types to reduce measurement error. 
“The item bank will allow one to potentially develop indiviudalised outcome scales to assess the impact of MS on an individual’s life. For example, you may play the piano, run marathons and do cross-word puzzles. You would then select the items (mini-questionnaires) from the bank that cover these domains of your life and include them with others to create your own individualised outcome scale. This scale can then be used to tract the impact of MS on your life, hence the term health-related quality of life (HRQL). This make much more sense than trying to shoe-horn everybody into one scale, which is what we do at present.”

“Am I talking gibberish?”

Other reading: Quality of life, Neuro-QOL

Other relevant posts on this blog

22 May 2011

Disability Outcomes Meeting – Washington DC 19th-20th May 2011. I have just attended an International task force meeting on disability outcomes in MS; the main attendees were clinicians working in MS (trialists), several of 

19 Jun 2011
Patient characteristics and determinants of quality of life in an international population with multiple sclerosis: Assessment using the MusiQoL and SF-36 questionnaires. Mult Scler. 2011 Jun 13. [Epub ahead of print] 

19 Jun 2011
Re comment from anonymous and others: “Nothing annoys me more that the money wasted on quality of life type research.” QoL research has to be done; in fact it is critical if we want to get drugs licensed for use in the UK. 

2 thoughts on “Research: Quality of Life outcome measures”

  1. Re: "I can't see how this sort of thing fits into routine appointments."It is more for clinical trials and other types of research. But it does have the potential for MS'ers to track their own disease course. I am not sure if you want to; it may be depressing seeing things getting worse or it could be the opposite staying stable or improving on an effective DMT.

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