Tuesday, June 21, 2005

The expert patient: a new approach to chronic disease management for the 21st century Part #2

Expert Patient: A new approach to chronic disease management for the 21st century, Part #2.

Hope that all of you had a fantastic Father's Day, and week-end. I had saved up my strength last week, and will have to do double resting this week, but it was well worth it to be able to spend the week-end with a friend. See, this is a perfect example of me being able to manage my chronic disease and still live my life to the limits of my capabilities!

This blog will discuss the "Why" of chronic disease management. Part #3 will discuss the "What"; and, Part #4 will actually provide you with some information about the "How".

For those of you who have had an opportunity to read about my professional career, you will see that I started out as a "Federal Auditor" of Human Resources practices, policies and procedures (which is why I was able to create the Disabilitykey Workbook in the first place). As an Auditor, I always wanted to know what is the "ROI" (Return on Investment) as they say in the business world. Why would people with chronic illnesses want to learn how to manage their disease symptoms? Why would their Doctors want them to learn and do these things? What is in it for both patients and Doctors?

First of all, it was a fascinating subject for me to research! And, imagine my surprise to learn that, even though the original study was conducted here in the United States at Stanford University, it appears that, at this point in time, England, Scotland, and Australia appear to be further along in actually implementing programs than we are here in the US! And, when we get to part #4, imagine my chagrin to find out that the great online training program to become certified in chronic disease management, you have to live in England! Bummer, big time!

Oh, to clear up one point from the first in this series: the definition of "self-efficacy". Here is the definition used in the context of chronic disease management: Self -efficacy is the belief in one's capabilities to organize and execute the sources of action required to manage situations associated with one's chronic illness.

We begin the WHY part of this subject in the United Kingdom, where their Department of Health came to the following conclsion:

Little has been done to prepare patients for long-term management of their diseases. They face many challenges in coping with discomfort and disability and carrying out treatment programs on a regular basis. They need to modify behavior to minimize undesirable outcomes, adjusting their social and work lives to accommodate their symptoms and functional limitations and deal with the emotional consequences. For their care to be effective, they must become adept at interpreting and reporting symptoms, judging the trends and tempo of their illness and participating with health professionals in management decisions. (Note: language has been "Americanized" for greater ease of understanding on, what they call, "this side of the Pond".)

It was the chief medical officer for England, who first introduced the name “expert patient". He said that expert patients are "people who have the confidence, skills, information and knowledge to play a central role in the management of life with chronic diseases." Doesn't this sound logical?

Here are some Chronic Illness statistics here in the US.
  • In the US for example, LESS than ONE PERCENT of the people who stand to benefit from self managing their chronic arthritis - do so.
  • Chronic disease has become pandemic in the United States, and estimates are that it will affect 148 million people by the year 2030.
  • Patients with chronic illnesses cost the health care system over three times more than individuals without chronic conditions.
  • The Population of U.S. adults over 65 is expected to double between 2000 and 2030.
  • Over 80% of adults over 65 years of age have one or more chronic conditions -- over 60% have two or more chronic conditions.
  • Consumers with five or more chronic conditions account for two-thirds of all Medicare spending.
  • People with chronic conditions are responsible for 78% of all health care spending, 95% of all Medicare spending, and 77% of all Medicaid spending for community-dwelling adults.
  • The U.S. has by far the most expensive health care system in the world -- but lags most other developed countries in key quality and consumer outcomes.

Wow! These facts really shocked me! And, let's talk about those "lengthy" 15 minute Doctor visits! Consider this:

On average, a patient spends around three hours per year with a health professional. This means that the patient is left to manage his/her own condition for the other 8757 hours of the year. If you, or someone you know has a chronic illness, wouldn't you be more comfortable knowing what to do during those "other" 8,757 hours that you are not in a health professional's presence? I sure did, and I didn't even know that such a thing as chronic disease management as a concept existed when I did the work depicted in the Disabilitykey Workbook. I only knew that I needed a way to live the best possible life IN SPITE of my chronic disease; I wanted to control it; I did NOT want it controlling me!

OK, chronic disease management just seems to make sense. But, the Auditor in me asks, are there measurable, objective results that this concept is worthwhile? And, according to the Agency for Healthcare Research and Quality (AHRQ), there are.

AHRQ-funded research at the Stanford University Patient Education Research Center led to development of the "Chronic Disease Symptom Management Program" (CDSMP). (Note: it is this Chronic Disease Symptom Management Program that we will discuss in part #4. England has this program that they refined for them online, but you have to live in England to sign up to take it.)

Standford's CDSMP is a 17-hour course taught by trained lay people that teaches patients with chronic disease how to 1) better manage their symptoms, 2) adhere to medication regimens, and 3) maintain functional ability.


Over a period of 2 years, AHRQ-funded investigators compared health behaviors, health status, and health services use in patients age 40 to 90 years (average age, 65) who had completed the CDSMP. When compared to baseline measures taken for the 6 months prior to the CDSMP, researchers found the following.

  • After 6 months, CDSMP participants had:
    Increased exercise.
    Better coping strategies and symptom management.
    Better communication with their physicians.
    Improvement in their self-rated health, disability, social and role activities, and health distress.
    More energy and less fatigue.
    Decreased disability.
    Fewer physician visits and hospitalizations.

After 1 year, CDSMP participants had:
Significant improvements in energy, health status, social and role activities, and self-efficacy.
Less fatigue or health distress.
Fewer visits to the emergency room.
No decline in activity or role functions, even though there was a slight increase in disability after 1 year.

  • After 2 years, CDSMP participants had:
    No further increase in disability.
    Reduced health distress.
    Fewer visits to physicians and emergency rooms.
    Increased self-efficacy.


I find these facts wonderful, and very rewarding to know. Stay tuned for our next blog about the WHAT of Chronic Disease Management. As always, if you want to make a comment, ask questions, or contribute to this information, please feel free to do so.

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