Using Orthotics in Rheumatoid Arthritis

In case you wonder what orthotics or orthoses are, here's a picture of the side view of one of my insoles beside a foot (not mine). With the side view you can see the layers that provide the support and cushioning.

Using insoles that are custom made for my feet has meant less pain, and keeps me from limping most of the time.

This week I read an abstract about a clinical trial done in the UK. It was called "Clinical effectiveness and cost-effectiveness of foot orthoses for people with established rheumatoid arthritis: an exploratory clinical trial". Though I looked for the full paper I could not gain access to it prior to writing this. I have since read the full paper. It makes my conclusions less clear cut.

The conclusion of this trial is that even though "semi-rigid customized foot orthoses can improve pain and disability scores in comparison to simple insoles" that providing them is not worth the money on a Quality Adjusted Life Year (QALY) basis. 

Fake money for false savings (IMO)

They conclude this despite the fact that people with rheumatoid arthritis (RA) have "greater difficulty with activities of daily living, increased fear of falling and greater self-reported foot impairment." 1

The pain and disability experienced by people with rheumatoid arthritis who have involvement of their weight bearing joints will frequently lead to damage to the ankles, knees or hips due to poor gait mechanics. 

It is estimated that one in three adults with RA will fall once or more times per year (Stanmore et al, 2013) with younger adults falling as often as older adults. Additionally 68% of people in the UK who have RA are reported to be physically inactive. In fact I have wondered for years why anyone thinks that a "Walk" is a good way to raise funds for RA.

People who have pain and disability when they walk are less able to remain in the workforce, accomplish normal chores and errands and often experience social isolation.

As a person who has been using customized orthotic insoles for over 32 years I would like to say that my experience of these insoles includes 1,664 weeks of use which is 350% more hours than the whole clinical trial in total which included 41 (only 29 completed the study) people for a term of 16 weeks. (464 actual person weeks of usage). 

I realize that the experience of one person is not research - it is qualitative and experiential, and yet the sheer length of time people with RA must live with this pain and disability should not be so easily disregarded. My 1664 weeks provides a perspective on the length of the trial.

Through the use of custom made orthotic insoles I have been able to delay most of the surgeries I have needed for up to twenty years. I would maintain that a 16 week trial is far too short to come  to conclusions about long term efficacy, and that this trial has limited exposure to experiential evidence, based on the short duration and small sample size.

Increased surgery and the future need for custom-made footwear might quickly erode the short term savings that would seem to benefit the healthcare system, while leaving patients with more pain and increased disability.

There is no sign that patients were involved in this trial in any way beyond being subjects. I would like to see some patient involvement in the outcomes that are to be measured in future research.

Learning From a Clinical Trial

At one point in my care my doctor suggested that I participate in a clinical trial for a possible new drug for rheumatoid arthritis.  It was a double blind trial which meant that neither I nor my doctor and the trial staff knew who was receiving the real drug and who was receiving the placebo.

                                        designyoutrust.com

The whole trial protocol  was very new and exciting to me, from the very detailed informed consent, to the questions that had to be answered in great detail, and the necessary lab tests before starting the new drug. The appointments that were necessary were laid out in detail so that I was able to fit them into my schedule.

All of this extra care and attention made a real difference to me.  I learned a lot from the trial including the exact status of my health at the time.  One of the most valuable things I found out was that I did not have to go to the GP doctor every week to have my methotrexate injection.  No one had ever told me I could do it myself!!

The staff was encouraging and helpful.  I was able to ask about every health issue. Getting that kind of attention is a rare luxury in today's health system and I am sure that alone improved my health.

I also found that I had an inflated view of my skills as a patient.  In my mind, I was the most careful patient ever. The one who could truly be counted on to take my pills exactly as prescribed.  It seems my opinion in this area was not totally accurate.  

Since the pills had to be kept in the refrigerator and taken with each meal I had to make sure to have a supply at work so I would not miss taking any doses, but I could not keep too many there because of the necessity to count and balance the pills I had left.

                                            collecttoys.net
In fact I am sure that at one point I made a mistake, forgot I had taken one and took another.  That's when I began to think that I might in fact be taking the real drug because I developed a slight rash and some itchiness.  (In fact I was taking the real drug but only found out much later)

The study was suddenly discontinued. The final letter said that there were some bad effects in the animal studies and I had to return all of the pills I still had - that's when I found that the count was off.

The trial was a rare opportunity.  I didn't get any worse or better but due to the encouragement I started to exercise more and to eat better.  It shook me out of the attitude that I couldn't do much and made me feel more capable and better off.  I would gladly do it again.

                                     rare quail telegraph.co.uk