I try to read as much as I can about COPD for a few reasons.
The first is to educate myself about the condition I live with.
The second is to educate others.
But I also read as much as I can about it in order to keep up with advancements that are being made throughout the world and to find studies in which I might want to participate to find better treatment and medicines.
COPD and pulmonary rehabilitation
Without intentionally looking for them, I recently came across a few interesting articles about COPD and pulmonary rehabilitation.
As you may know, “rehab” usually consists of a number of exercises that, while they will not “cure” COPD, go a long way in helping to live better and possibly longer with it.
Many of us were encouraged to participate in programs soon after our primary diagnosis. Some took advantage of the recommendation and some did not.
A recent study by the Baystate Medical Center in Massachusetts found that a disturbing number of patients who were prescribed pulmonary rehabilitation did not take advantage of it. Of 223, 832 folks who were hospitalized by COPD and prescribed pulmonary rehabilitation, only 1.9% went to rehab.1,2
I thought that was pretty shocking.
Why do certain people attend rehab and others don't?
The study mentioned cultural factors as being indicative of whether someone will attend rehab (being younger, higher socioeconomic status) or will not (smokers and patients who had to travel more than 10 miles to the rehab facility).
Dr. Kerry Spitzer who led the study said “Unfortunately, many patients face multiple barriers to participating...We have a lot to learn about how hospitals can help address these challenges.”
Johns Hopkins University is also engaged in a study about “rehab.” However, their study takes a look at self-management and peer mentoring.
The researchers at Johns Hopkins say that self-management helps patients “...improve day-to-day control of their disease and improve their well-being."3
But, one of the assumptions I find that both studies have made that might interfere with their research is this statement:
“Pulmonary rehabilitation programs are tailored to patients and offer physical training, self-management advice, nutrition counseling, and emotional support.”
My own experience with rehab for COPD
I think if that were true, folks with a COPD diagnosis would be flocking to join, but in my own experience, I have found that it simply isn’t true.
And while it’s obviously beneficial to go to rehab, after a while you say to yourself, “I’m feeling a little better, but I know I’m not going to get any better.”
And you stop.
So there seem to be a number of challenges in attracting folks to rehab that both studies are trying to address.
I think the Johns Hopkins approach will be most effective. It is set up so that:
- A healthcare professional is the primary communicator with patients about COPD self-management and;
- Both healthcare professionals and peer mentors engage with study participants in conversations about COPD self-management using one- to- one and group conversations.
Difficult to find a support group
I was briefly involved in a peer mentoring group soon after I was diagnosed with COPD. It really was a rich and rewarding experience to hear others, like myself, speak about what they felt, how they coped with COPD and what can be done to make life a little easier for yourself and your family.
But these groups have been the most difficult to locate - in my neck of the woods at any rate.
How has your experience been navigating the healthcare system as someone with COPD?