Friday, June 17, 2005

The expert patient: a new approach to chronic disease management for the 21st century

Are You an "Expert Patient"? Can your Doctor(s) say the following about you?

"My Patient knows more about the disease than I do; as much about the disease as I do, and enough about his/her symptoms that it is easy to communicate with him/her."

Assisting you become an Expert Patient is the goal of Disabilitlykey - the website of and these blogs.

Why is becoming an Expert Patient so important? There is plenty of emerging research about the needs of 21st century patients. Most of that research centers around the concept of "Illness Self-Management" for what is called "chronic illness".

What, you ask, is a "chronic illness". Consider the following.

Health concerns are usually classified as either acute or chronic. Acute illnesses usually begin abruptly and last only a short time. Most people with an acute illness can expect to return to normal health. A strep throat is an example of an acute illness: it is easy to diagnose with a lab test and is cured with antibiotics.

Chronic diseases are different. They usually develop slowly, last long periods of time, and often are never cured. In most cases, there is no cure. The long-term effects may be difficult to predict. Some conditions cause few problems. Others cause only episodic problems or symptoms that can be controlled with medication. However, in some cases, a chronic disease may severely limit a person's ability to work, go to school or take care of routine needs. Examples of chronic diseases include, but are in no way limited to: diabetes, congestive heart failure, asthma, hypertension, chronic kidney disease, depression, irritable bowel syndrome, arthritis, emphysema, fibromyalgia, parkinsons symdrom, and multiple sclerosis - just to mention a few.

Why is "Illness Self Management" so important a concept for those with a chronic condition?

For the person with a chronic condition, there is no way not to self-manage the disease/illness. If one retires from life and stays at home as a depressed person this is a type of self-management. On the other hand, many people learn to deal with their conditions and remain active, happy participants in life. One can learn the skills necessary for this later type of proactive self-management.

And, it is the learning of the skills necessary for this later type of proactive disease/illness self-management that will be the subject of the next series of blogs. The information about developing the skills is fascinating; and, they (the skills) really are the key to DECIDING, and remaining active, happy participants with a quality of life as full as you can make it.

Research and practical experience in North America and Britain are showing that today’s patients with chronic diseases need not be mere recipients of care. They can become key decision-makers in the treatment process. By ensuring that knowledge of their condition is developed to a point where they are empowered to take some responsibility for its management and work in partnership with their health and social care providers, patients can be given greater control over their lives. (Note: Once again, this process of acquiring the knowledge of your condition so that you can reach the self-management level with your Doctor(s) is the purpose behind disabilitykey.)

Self-management programs can be specifically designed (between you and your Doctor(s)) to reduce the severity of symptoms and improve confidence, resourcefulness and self-efficacy (a big word that basically means self reliance).

As a last thought for this blog, the disease/illness self management covers the following areas:

1) knowing how to recognize and respond to changes in a chronic disease
2) dealing with problems and emergencies
3) using medicines and treatments effectively
4) finding and using community resources
5) getting enough exercise
6) coping with fatigue, pain and sleep problems
7) maintaining good nutrition
8) making decisions about when to seek medical help
9) working with your doctor(s) and other care providers
10) talking about your illness with family and friends
11) managing work, family and social activities

As always, if you have any questions or comments about this, or any disabilitykey blog, please feel free to do so.

Stay tuned for more about Chronic Disease Self-Management!


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