Friday, February 5, 2010

Pain in the Keyboard

A study was recently completed about RA and computer usage. Patients with longstanding rheumatoid arthritis had their computer skills measured using the Keitel Hand Function Index, which assesses active range of motion. The study sought to discover which variables - impairments in range of motion, impairments in hand function, general activity limitations, or task-specific training - explain the most variance in keyboard and mouse speeds in computer users with rheumatoid arthritis.

Here is one article about the study entitled "RA Patients Maintain Computer Skills." Here is another entitled "Rheumatoid arthritis doesn't hinder computing skills." The title of that second article does not please me. I'd like to invite whoever wrote that title to try typing for three hours straight on a law exam, upon which their whole grade depends, with my RA hands and see if it "doesn't hinder" their computing skills!! (Grrr...) In any event, here is what the study found:
"A recent study by researchers from the University of Pittsburgh found that workers with rheumatoid arthritis (RA) were comparable to non-impaired individuals in keyboarding speed."

"The hand impairment experienced by many patients with rheumatoid arthritis did not significantly interfere with their computer use."

"Keyboarding speeds were found to be comparable with unimpaired workers, suggesting that most of the arthritis patients could be competitive in the job market."
First, I want to make it clear that I am not quite disputing the study itself. In fact, I would like to do everything in my power to encourage studies about RA and how it affects us. And I realize that there are limitations to medical studies. This study utilized 45 computer users with RA from an Arthritis Network Research Registry and tested specific keyboard and mouse tasks, measuring on a known index. If I were a medical researcher trying to figure out the effect RA had on computer use, I would probably start at about the same place.

But I do have some concerns with the conclusions made based on the study:

(1) There doesn't seem to be much acknowledgment in the study that RA affects different people in different ways. The study doesn't seem to recognize that some people with RA don't have hand pain at all. And some people still have RA but go into periods of remission without any pain. So, while I'm glad that those RA patients may not have diminished computer skills, I don't think you can extrapolate to say we all do. Any study about RA ought to recognize that the disease affects different patients in different ways.

I think it would have been useful to know (a) how many of the study participants usually experienced hand or wrist pain from their RA and (b) how many of them were experiencing pain in their hands at the time they took the tests. Just because you can type fine with RA one day doesn't mean you can type fine with RA every day. And what if your bad day is the day that important report is due to your boss? How competitive are you then?

(2) The average duration of RA among study participants was 16.7 years. This seems like a high average to me. Not to discount the pain of someone who has had RA longer, but it seems to me that if you have had RA for more than 10 years, there's a fair chance (hopefully!) that you've found the right meds/treatment for you and you are dealing with a lot less pain. Even if you still have pain, you've still had at least a decade (and for some study participants, two decades) to figure out how to deal with the pain - both physically and emotionally.

But what about the people who were recently diagnosed and/or haven't found the right treatment yet? Maybe I'm biased because I'm still in this category, but it seems to me that these are the people who are most at risk from loosing competitiveness in the workplace. If you've just been diagnosed, haven't found the right meds, are still in a pain, and still trying to adjust to living with RA, it seems to me that you might have more trouble using a computer than someone who has had RA for 16.7 years. But the study doesn't appear to address this issue at all. And sweeping conclusions like "RA doesn't hinder computing skills" makes it difficult for people adjusting to RA to get compassion in the workplace.

(3) My last big complaint is that the study doesn't seem to take pain into account at all. Just because you can type at a certain speed doesn't mean it doesn't hurt to do so!!! People with RA deal with pain all the time and as a result they are very tough. When you have RA, you can't just stop doing something you need to do just because it hurts - otherwise people with RA would never be able to do anything!! For example, I am wearing a brace on my right wrist right now because of pretty severe pain. But I've still spent half an hour typing this post because I'm skilled at ignoring pain. And, if your livelihood depends on it, you may just struggle through the pain a little bit more to keep up. But I don't think that means you should have to. Employers should be more understanding in the case that it hurts to do something, even if you can still do it. But, again, conclusions like "RA doesn't hinder computing skills" doesn't give anyone any incentive to be understanding towards people suffering from RA pain.

So I guess I do have a few concerns about the study itself, but mostly I'm upset about the sweeping conclusions in headlines that have come out of it. Again, those headlines make those of us with RA look like a bunch of whiners.

But we're not. We are tough. We deal with pain every single day. We work really hard to keep up. And we deserve some credit for that.

8 comments:

Itsy Bitsy Spider said...

I like the quote "We found that our RA workers had similar keyboarding speed compared with the non-impaired sample." But that makes me wonder... how many words per minute did the two sample groups produce? If both the RA workers and the "unimpared sample" typed 10 words per minute, I'd say the assessment is probably fair ;-)

~Mariah~ said...

That's true. I'm sure the study itself is more careful about the claims it makes. The problem is that the public's image of RA comes from those short articles. And I'm sure some people wouldn't even bother to read the whole article, so their info could come from just the headline!! Which is NOT GOOD for any of us.

~Mariah~ said...

In other news, I LOVE the three column layout of your blog. I don't know as much as you do when it comes to web-design. Do you think if you gave me some hints I could figure out how to do it??

Kelly said...

Hi Mariah. I like sunshine too. I am very uncomfortable on evenings like last night when I am angry & I have to write. I want to be uplifting - that's me: Miss Lemonade Stand :D

Maybe we can think of it this way, Miss Sunshine: We are shining the light into the darkness. It's not our fault there is darkness to begin with.

Since it was only a case in point, I did not take the time to pick at the "stupid little study" as I called it in my blog, but I am glad you decided to take it on. Good job.

I see several possible flaws to the study. Maybe together we ought to rebut it properly. Is there any academic forum in which to do so? I wonder.

We know they're wrong, so we have an advantage. Although that argument won't hold up, it sure gives us incentive to get to the bottom of things...

Take care. & Keep writing.
Kelly

Sarah said...

I'm sure if you contacted the study authors they would give you more information/details, and you could express your concerns about the loop holes and lack of comprehension in their study. Might be worth doing so they can improve their studies in the future!

~Mariah~ said...

Kelly: I'm sure you have a much better idea of how often this happens and you would probably go crazy trying to rebut every case in point. ~;o) I've only just started reading this RA material, mostly thanks to the links on your blog. It took me a while to come to a point where I didn't feel miserable or upset reading about RA in general. But now that I have a better understanding of the disease, it is frustrating to see it portrayed so lightly. It certainly hasn't been a "light" experience for me.

From an academic perspective, I think it's possible that the authors of the study might be willing/interested in our input. It might be possible to contact them through the University of Pittsburgh. But I'm honestly less concerned with the study itself - I don't want to discourage RA research - and more concerned with those short articles that make sweeping conclusions extrapolating from the results of the study. And I'm not sure what to do about all of those!

Melissa (A Gracious Calm) said...

When my fingers hurt, it hurts to type and sometimes I have to type with 2 or 3 fingers, no "properly". What a load of crock.

~Mariah~ said...

MELISSA: I want to thank you for your comment on this post - it inspired me to read this post again. I wrote this post more than a year ago and I am STILL struggling with pain in my hands and computer skills (I mean, that's EXACTLY what I posted about just this afternoon). I wonder what we can do to deal with this problem or at least get people to understand? Hmm....worth thinking about some more.