What Is Chronic Disease Self-Management All About?
What is Chronic Disease Self-Management? Perhaps you have heard the term. Or, perhaps you are familiar with the actual Chronic Disease Self-Management Program (CDSMP) developed by medical professionals at Stanford and taught through workshops across the United States. This article is a break down of what Chronic Disease Self-Management is, the evidence supporting programs, and information on resources.
What is Chronic Disease Self-Management
First, what is Chronic Disease Self-Management? Without all the caps, it's basically everything that falls within your purview when it comes to managing a chronic disease. The very nature of an aging population and the extraordinary advances we have seen over the last century in life-expectancy also brings with it the burden of increasing chronic diseases.
Because people now live longer, they are at a higher risk of various chronic diseases. This entails an ongoing need, often for decades, to medically manage complex chronic conditions like rheumatoid arthritis.
Biomedical advances for a longer life
Many of us are looking ahead at decades more of life to live despite the seriousness of our conditions. We can thank biomedical science for the extraordinary advances here, despite the frequent frustrations of medical care many of us are intimately familiar with.
Overall, progress in reducing the burden of RA is advancing, with the rate of disability declining at a rate of 1-2 percent per year.1 This is both due to improved medications and changing standards in the way RA is treated.
Understanding self-management with chronic illness
Self-management is everything you can do to help manage your disease. That’s kind of self-explanatory. Nonetheless, researchers have looked at the habits, mindsets, attitudes, and lifestyles of people with chronic conditions and attempted to determine what best facilitates “living well” with chronic illness. That includes disease with extensive pain and loss of physical ability like RA.
How does this relate to RA?
Here is my personal mental shortcut for what self-management is after having studied it: “What falls within my control, and what is outside of it?”
- And here is my brief thinking on the answers to that: Having RA is decidedly out of my control. Taking medications regularly is within my control. Trying new medications when others have failed is within my control. Whether they are effective is outside of my control.
- Deciding what I view as best for me and my life is within my control. So is the ability to reject what others say I “should” do. That other people will continue to tell me how to live is outside of my control.
- Learning to communicate more assertively with loved ones and doctors is within my control. How they respond to me is outside of my control.
- Waking up to exercise is within my control. Whether or not I wake up in pain is out of my control.
- My diet is within my control (though financial resources can limit the range of diet and quality of food).
- My attitude is within my control.
Some things are both within and outside of my control
Some things are an interesting blend. For instance, pain is somewhat within and outside of my control. I can choose how I respond to it, but I cannot choose for it to go away. Some levels of pain are simply so overwhelming, that mentally there is little one can do to mitigate it.
Pain is a blend. I can do my best to reduce pain in my life by exercising and maintaining a healthy body weight, and by continuing to do exercises that reduce pain in certain joints and increase mobility. Or, I can practice calming myself when pain comes, or practice focusing on tasks that I am doing and trying to take my focus off the pain. But I cannot rid myself of pain.
Is there evidence that Chronic Disease Self-Management makes a difference?
Basically, there are more and less effective ways to manage chronic disease. Chronic Disease Self-Management Programs teach concepts and principles of effective coping, including many of the things I’ve listed above. For instance, self-management programs teach: “techniques to deal with problems associated with chronic disease, appropriate exercise, appropriate use of medications, communicating effectively with family, friends, and health professionals, nutrition, and, how to evaluate new treatments.”
There is evidence that training in self-management can make a difference in the quality of your life with a chronic disease. Will it help everyone? No, of course not. But does it have a generally positive effect for those who decide to take a more active role in managing their disease? The evidence is that for many people it does.
What does the research say?
The researchers at Stanford fielded their Chronic Disease Self-Management Program, a workshop that meets once a week for 6 weeks, in a randomized control trial (RCT).
The results found that both the RCT and the two year follow up found that treatment subjects, when compared to controls, “demonstrated improvements in weekly minutes of exercise, frequency of cognitive symptom management, communication with physicians, self-reported health, health distress, fatigue, disability, and social/role activity limitations.”2
They also found the treatment group had decreased utilization of hospital-based care and fewer days spent in the hospital compared to controls.
What are the benefits of Chronic Disease Self-Management?
Increasing your ability to self-manage can have great personal payoffs. That can come in the form of quitting an addictive substance, reducing alcohol, increasing exercise, reducing isolation, getting more of what you need from your doctors or loved ones, and so forth. The reasons for investing time in improving how you manage your disease are many.
Chronic Disease Self-Management resources
If taking a workshop in Chronic Disease Self-Management is something you are interested in, here are several resources to find workshops in your area, or online.
Evidence-Based Leadership Council: Find EBLC Programs and Workshops
Center for Disease Control and Prevention: Self-Management Education Workshops
National Council on Aging: Chronic Disease Self-Management Programs
And the evidence on the efficacy of these programs for those interested: Center for Disease Control and Prevention - Sorting through the Evidence for the Arthritis Self-Management Program and the Chronic Disease Self-Management Program.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?