Expert Patient: A new approach to chronic disease management for the 21st century.
AUTHOR: Carolyn S. Magura
PART 1: INTRODUCTION TO CHRONIC DISEASE SELF-MANAGEMENT
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."
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". 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 "Chronic Disease 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.
Chronic Disease 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
finding and using community resources
getting enough exercise
coping with fatigue, pain and sleep problems
maintaining good nutrition
making decisions about when to seek medical help
working with your doctor(s) and other care providers
talking about your illness with family and friends
managing work, family and social activities
It is the learning of the skills necessary for this later type of proactive disease/illness self-management that is the subject of this document. 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 one of the primary purposes behind the www.disabilitykey.com website.)
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).
PART 2: WHY BECOME A CHRONIC DISEASE SELF-MANAGER?
First of all, it was a fascinating subject for me to research! And, imagine my surprise to learn that, even though the original Chronic Disease Self-Management study was conducted here in the United States at Stanford University, it appears that, at this point in time, (mid-2005), England, Scotland, and Australia appear to be further along in actually implementing programs than we are here in the US! And, imagine my chagrin to find out that to be able to take the great online training program to become certified in chronic disease management, you have to live in England!
In the United Kingdom, 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 here in America on, what they [the United Kingdom] call, "the other side of the Pond".)
It was the chief medical officer for the United Kingdom, 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.
However, it is the following statistic about how much ACTUAL TIME, on average, that a patient here in the United States spends with their Doctor(s) that really got my attention. On average, we with a Chronic Dieseae spend 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). 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.
1. After 6 months, CDSMP participants had:
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.
Fewer physician visits and hospitalizations.
2. 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.
3. After 2 years, CDSMP participants had:
No further increase in disability.
Reduced health distress.
Fewer visits to physicians and emergency rooms.
Another source of actual results from people who have made the decision to become Chronic Disease Self-Managers comes from The United Kingdom. The United Kingdom has a website describing the recent results of their Expert Patient "Programme" (EPP). The website provides periodic “eUpdates” to inform people about new developments within the Expert Patients Programme such as new publications, forthcoming events and news from the national team.
The EPP is a National Health Service (NHS) lay led self-management programme for people living with any long-term health condition(s). Groups of 8-16 participants, with a mix of different conditions, meet over six weekly sessions and are led through a structured course by trained tutors who are also living with a long-term condition. Each session (lasting two and a half hours) looks at ways to better manage the effects of their long-term condition. For more information about the EPP please visit the EPP website at www.expertpatients.nhs.uk
EPP PILOT INTERNAL EVALUATION
Internal evaluation data from approximately 1000 EPP participants who completed the course between Jan 2003 and Jan 2005 indicates that the programme is achieving its aims in:
1) Providing significant numbers of people with long term conditions with the confidence and skills to better manage their condition on a daily basis.
- 45% said they felt more confident that they would not let common symptoms (pain, tiredness, depression and breathlessness) interfere with their lives.
- 38% felt that such symptoms were less severe 4 - 6 months after completing the course.
- 33% felt better prepared for consultations with health professionals.
2) Providing significant reductions in service usage by people with long term conditions completing the EPP course.
- 7% reductions in GP consultations
- 10% reductions in Outpatient visits
- 16% reductions in A&E attendances (US note: note sure what this is.)
- 9% reductions in Physiotherapy use
Over 94% of those who took part felt supported and satisfied with the course.
If you want to sign up to receive periodic updated information about what the Brits are doing, you too can sign up to receive an "eUpdate" as they call them. It is FREE, and you can sign up by going to: www.expertpatients.nhs.uk.
WHAT IS CHRONIC DISEASE SELF-MANAGEMENT
Chronic Disease Self-Management; Self-Efficacy; great terms, but what do they really mean, and how does one start to become a Chronic Disease Self-Manager?
Consider the following quotations associated with these concepts.
1) "Row Your Own Boat" - Chronic Disease Self-Management.
2) “Every bird flies with its own wings." Swahili proverb
What do the two quotations have in common? First of all, the desire, then the knowledge, then the action to take back control over your health, and your life.
Here are questions – a “mini quizz” that you can use to ask yourself about your "readiness" to adopt the concept of Chronic Disease Self-Management (or, to assist someone else in their journey toward this objective).
CHRONIC DISEASE SELF-MANAGEMENT READINESS TEST
Created By Stanford University’s Patient Education Research Center, this test is called: Self-Efficacy for Managing Chonic Diseases 6-Item Scale. The test measures how confident you are that you can keep “your situation” (i.e., the situation addressed in each of the following 6 questions) caused by your disease from interfering with the things you want to do?
For each of the following questions, please choose the number (between 1 and 10) that corresponds to how confident you are that you can keep the symptoms caused by your disease from interfering with the things you want to do? #1 represents "Not at all confident"; #10 represents "Totally confident".
1) How confident are you that you can keep the fatigue caused by your disease from interfering with the things you want to do?
2) How confident are you that you can keep the physical discomfort or pain of your disease from interfering with the things you want to do?
3) How confident are you that you can keep the emotional distress caused by your disease from interfering with the things you want to do?
4) How confident are you that you can keep any other symptoms or
health problems you have from interfering with the things you want to do?
5) How confident are you that you can do the different tasks and activities needed to manage your health condition so as to reduce your need to see a doctor?
6) How confident are you that you can do things other than just taking medication to reduce how much you illness affects your everyday life?
The higher you score toward "10" on each question, the more "self-efficacy" you have. (Reminder: self-efficacy is the belief in one's capabilities to organize and execute the sources of action required to manage situations.) As you can probably figure out, I score either 9 or 10 on each question. My Disabilitykey Workbook (see www.disabilitykey.com) and the confidence that I received by first, executing the processes contined there-in for myself, and then in developing the Workbook to assist others, has allowed my self-efficacy to be high.
OK, you have rated yourself, and you want to know more about the WHAT of this topic. First, we will discuss the definition of Chronic Disease Self-Management; next, the stages of a "chronic disease self-help behavioral change"; and, finally, something called "social learning theory".
Definition of Chronic Disease Self-Management
Based on a comprehensive literature review of over 400 articles, Researchers have proposed the following definition.
Chronic disease self-management involves [the person with the chronic disease] engaging in activities that protect and promote health, monitoring and managing of symptoms and signs of illness, managing the impacts of illness on functioning, emotions and interpersonal relationships and adhering to treatment regimes. There are a number of key elements to this definition that will enable us to develop a practical concept of self-management. It is important to note that these elements are about the behaviors of the patient, rather than models of self-management for health care systems, service providers or health professionals. These elements suggest that self-management:
• Entails engaging in activities that promote health;
• Involves managing a chronic condition by monitoring signs and symptoms;
• Entails dealing with the effect of a chronic condition on personal well being and interpersonal relationships; and
• Involves following a treatment plan prescribed to you by your Doctor(s).
The definition of self-management encompasses a range of behaviors, as well as knowledge and attitudes and is an important starting point towards the development of a concept of chronic disease self-management.
HELP Getting from where you are to Becoming a Chronic Disease Self-Manager: Stages of Behavioral Change
A model of behavior change that has been applied to chronic disease self-management is based on research on how people change behavior, either on their own or within an intervention program (i.e., some sort of action to assist in the change). The theory is that the ceasing of risk behaviors (eg. smoking) and acquisition of health promoting behaviors (eg. physical activity, relaxation) involves the progression through the stages of change. They are:
• Pre-contemplation [not thinking of change]
• Contemplation [thinking of change]
• Determination [ taking preliminary steps to change]
• Action [ actively engaging behavior change]
• Maintenance [ sustained behavioral change]
• Relapse [ can occur at any point.]
Behavioral change is facilitated by a personal sense of control. If people believe that they can take action to solve a problem, they become more inclined to do so and feel more committed to this decision. This "can do" attitude mirrors a sense of control over one's environment. It reflects the belief of being able to master challenging demands by means of adaptive action. It can also be regarded as an optimistic view of one's capacity to deal with stress. (Not to sound redundant, but this really is about the glass being "half-full" and NOT "half-empty".)
OK; now we understand the behavioral change steps; now, on to the social learning stage. The theoretical underpinning of effective chronic disease self-management programs should be based on social learning and behavioral theories. The key principles of these theories as applied to chronic disease self-management are:
• Disease management skills are learned and behavior is self-directed;
• Motivation and confidence (including self-efficacy) in managing one's condition dictate an individual's success;
• The social environment (ie. family, workplace & health care system) support or impede self-management; and
• Monitoring and responding to changes in disease state, symptoms, emotions and functioning improve adaptation to the chronic condition.
PART 3: BECOMING TRAINED IN CHRONIC DISEASE SELF-MANAGEMENT
How do you become trained in Chronic Disease Self-Management? Here are the primary resources available.
1) Start with your own health insurance company. Call up the Customer Service folks in Plan, and ask if they offer "Chronic Disease Self Management Program" classes. My Internet searches indicate that many of the larger companies are offering such classes for their enrolees. And, in some cases, self-management is becoming a requirement of retaining insurance coverage!
2) Go to your State's Home Website, and look up the Department of Health, and of Aging. In some cases they might be the same, in others, different. Call each and see if/when they will be offering classes in your city/county for Chronic Disease Self Management Program.
3) Use one of the many Internet search engines to locate this statement: "(your state) Chronic Disease Self-Management Program (CDSMP)". This should help you locate classes in your state. In my state, they located classes by county and city. Some of the "bigger" states even offer classes derived from the original Standford research program.
4) Use one of the many Internet search engines to ask locate this statement: "Chronic Disease Self-Management Program (CDSMP)". This should provide you with additional options.
5) Finally, and probably the best source, from the original Stanford site where the concept was created, there is a link to each state’s CDSMP sites: http://patienteducation.stanford.edu/programs/cdsites.html If you go to this site, you can click onto your state and see which organizations in your state are licensed to offer the Chronic Disease Self-Management program.
PART 4: CONCLUSION
The National Center for Quality Assurance (NCQA) in their 2004 Health Care Quality Report comments that "the U.S. healthcare system as a whole remains plagued by deadly quality gaps that contribute to 42,000 to 79,000 avoidable deaths every year and $1.8 Billion in excess medical costs due to the system's routine failure to provide needed care."
According to Catherine Hoffman of the Henry J. Kaiser Family Foundation, nearly half the people in the U.S. are living with chronic conditions, at a cost of $234 billion in lost productivity and $425 billion in medical spending per year. These figures are rising. Moreover, they do not include billions of dollars in lost productivity of employees who miss work to care for family members who have chronic conditions.
Many people with chronic conditions, as well as family members who care for them, also suffer needlessly from the physical and emotional effects of their illness. By helping people change their behaviors and adapt to their conditions, self-management programs often increase people's adherence to medical treatments, strengthen their control of pain and symptoms, and improve their overall emotional well-being.