I did not realize there would be so much negativity coming from this community. I did not want to intrude so that is why I asked permission before posting a lengthy post. I figured if I just posted something it would seem a bit presumptuous. So far the response regarding BetterQOL.com has been very positive and forthcoming. I have met with the head of the local MS society as well as had a round table discussion with several neurologists who all thought it was a great idea. This portal is the brain child of a neurologist. We have also filed a patent application.
I do not want to intrude on your community but since this forum is open to anyone I am going to finish the post. The physician, a few others, and myself have been working on a web portal to track quality of life in patients with chronic illnesses. You have already said, "this is already being done or there are many web portals on the Internet, why is this one special?”
) is dedicated to bringing research quality of life measurements to routine clinical care. When a patient with multiple sclerosis currently sees their physician in routine practice, usually there is no formal assessment made of the patient's quality of life. A physician may look back at the patients history but no comparison using actual data is made from past to the present.
BetterQOL.com would like to change this. By bringing standardized diagnostic research instruments and quality of life surveys directly into a physicians practice, it would now be possible for the physician and patient to track the success of the patients’ treatment plan.
Many patients who suffer from chronic illnesses like MS at times may begin to loose hope; particularly when they are unable to see improvements from their treatment from the past year, or even the past six months. But if a patient could compare changes in their present treatment plan to the past, they would be able to actually see the changes. Therefore, their quality of life could be improved based upon this data.
What makes the quality of life so important to patients? For one patient, it may be waking up in the morning feeling rested enough to accomplish daily tasks at work before the afternoon exhaustion sets in. Another patient may be desperately trying to make it to their grandson’s big sporting event, although the temperature outside is stifling hot. And yet for another patient, they may just want to enjoy cooking a homemade dinner for the family without worrying if they will have enough energy afterwards to do the dishes, possibly help their children with their homework, or even get their children ready for bed.
Basically, this all boils down to one thing, the overall quality of life. Patients may not use those exact words, but as anyone with a chronic illness knows, the ability to function and live a normal life is what is valued most. To live a life that most people take for granted. A life that most patients with a chronic illness, fear will become a distant memory.
While this may seem obvious to patients and acknowledged on a theoretical basis by physicians; in clinical practice, the patients’ quality of life is not routinely tracked.
As I said right now we are only working on the MS section and would like to hear from you and get your input on our plans to better track MS treatment. Keep in mind our multiple sclerosis forms will come from the MS Quality of Life Instrument and may take about one hour to fill out. A helper may assist you in filling out the surveys as long as they do not coach you for the answers. The following sections/topics are as follows:
-General quality of life
-Impact of vision impairment
-Social support needs
-Survey of the patient’s perceived deficits
Now that you know our plans... we need your help. Will you please spend just a few minutes of your time on the http://www.BetterQOL.com
website to fill out our short market analysis survey and give us your input. Your feedback about using the portal will help us tremendously. The direct link to the survey is http://ms-survey.betterqol.com/SurveyIntro.aspx
It will only take a minute or two of your time and your time is very appreciated. Feel free to let others who have MS also know about the survey.