IMPACT-ALS survey

[lgelb]

Everything about this European implementation of a previous ALSA-funded US survey is bogus. Being published in a clinical journal and headlined in Mobility Management as "People with ALS Report 'Acceptable' Quality of Life" is just icing on the cake. To read this abstract is to appreciate how barren ALS outcomes research really is.

For perspective, I did patient/caregiver research much more sophisticated than this in SCI and MS, 20 years ago, and have served on federal panels evaluating patient-centered outcomes study funding applications-- the worst of which was better than this.

Outcomes work is often used in designing/justifying clinical trials, so we should not be settling for scholarly characterizations of the P/CALS context that are this tepidly misleading. Some of you are involved in various ALS initiatives. If/as you have a chance to suggest more actionable constructs, I hope that you will speak out.

 

[Nikki J]

Oh for goodness sake you don’t need a survey to come up with these platitudes. Would love to see the survey tool.

 

[SeaGunny]

Not sure what survey ya'll are talking about. I found one using the title Igelb titled and holy crap - I can do better in my off days. Nikki J. I agree!

 

[lgelb]

Yup, that's the one. The word "survey" in my post is clickable. When the word in a post is a different color, you can click on it and go to the site.

 

[Tomswife]

We were called by a firm doing a survey of ALS patients to understand their caregiving needs. I explained that I was my husband's primary caregiver and that he was unable to speak, due to ALS. No, they could not speak to me. They had to speak with him. Well, outaluck lady.

 

[SeaGunny]

Same issue here.