The MPHP 439 Online Text Book

Case Western Reserve University, Spring 2006

 

Patient Empowerment:

Improving the Outcomes of Chronic Diseases

Through Self-Management Education

 

by Laura E. Santurri

 

Chapter Table of Contents

I.  Introduction

II.  Defining Patient Empowerment

III.  Defining Two Prevalent Chronic Diseases – Diabetes and Hypertension

IV.  Defining Self-Management Education

V.  Self-Management Education and Self-Efficacy

VI.  Integrating Self-Management Education into the U.S. Healthcare System

VII.  Other Sources of Information

VIII.  References

 

Introduction

Until the middle of the last century, acute diseases dominated the U.S. medical community’s time and interest.  At the present time, however, chronic disease contributes to 70% of U.S. healthcare expenditures and is the principle reason why patients visit physicians.1,2  Despite this shift in prevalence, the U.S. healthcare system has not effectively adapted to the new needs of U.S. patients, and as a result, “discontinuity and fragmentation of care are widespread.”3

One way that health professionals have sought to improve health outcomes is through patient empowerment.  This chapter will begin with a brief introduction to the concept of patient empowerment and will discuss self-management education as one way that patient empowerment can be encouraged.  The chapter will end with a discussion of how self-management education has been integrated, and could further be integrated, into the U.S. healthcare system.

 

Defining Patient Empowerment

            The concept of patient empowerment is discussed frequently in medical literature, especially surrounding the topic of chronic disease and its management.  Typically, patient empowerment is defined as an individual being an active member of his/her disease management team.  For example, a patient that is empowered would be able to make decisions regarding his/her treatment with the respect of the health professionals that are treating the disease.4  This idea has also been expressed in discussions of patient-centeredness in medicine – that treatments should be aimed at what the patient perceives to be the problematic symptoms.5  Of course, the power of the patient to choose what treatments he/she wishes to receive presupposes that the patient has the ability to be a patient at all, meaning that he/she has access to healthcare.  This is not always the case, so to take a step back, it might seem that access is the first step to patient empowerment and choice is second to that.

            Patient empowerment does not just encompass the ability of the patient to make decisions and be active in their care, it also encompasses their education on the topic.  Typical patient education generally focuses on imparting knowledge to the patient that is disease-specific,6 and this is certainly important.  However, patient empowerment also means that the patient is educated in making good decisions about their health and not just the “medical” decisions.  It also means that they are educated in managing how the disease affects their roles in life (such as parent, teacher, spouse, etc.) as well as the emotional impact of the disease.  It could be said that true patient empowerment integrates multiple concepts that allow a patient to effectively self-manage their disease.5

 

Defining Two Prevalent Chronic Diseases – Diabetes and Hypertension

            Diabetes and hypertension are two prevalent diseases in the U.S., with diabetes affecting 20.8 million Americans (or 7% of the population)7 and hypertension affecting 50 million Americans (or 1 in 5 adults).8  Because these diseases are prevalent in the U.S., they will be used to provide examples of how one particular self-management program, the Chronic Disease Self-Management Program, can be applied.  Therefore, they will be defined here so that the reader can have a better understanding of how they are used as examples later in the chapter.  It is also worth noting that self-management education is also highly applicable to other chronic diseases, such as asthma, arthritis, and depression, and even lifestyle management in general.

 

Diabetes

Type II diabetes is the most common form in the U.S., and it affects approximately 90-95% of the individuals who have the disease.  It is characterized by insulin-resistance, which means that the insulin that the pancreas secretes is not enough or cannot be recognized by the body.  When an individual has insulin resistance, glucose builds up in the blood instead of entering the body’s cells, and the cells are unable to function properly as a result.  This can result in dehydration, coma, and damage to the body’s nerves and organs.  Symptoms of type II diabetes include increased thirst and/or hunger, dry mouth, nausea, fatigue, blurred vision, and frequent urination.9

Treatment of type II diabetes can include lifestyle adjustments, such as diet modification (reducing carbohydrate intake) and increasing levels of physical activity as well as different oral medications or insulin injections.  Most importantly, a diabetic’s blood sugar levels should be monitored regularly to avoid diabetic complications, such as eye, kidney, and nerve disease, dental problems, and hyperglycemia.9

 

Hypertension

Hypertension, also commonly referred to as high blood pressure, is characterized by blood pushing against blood vessel walls with too much force.  This increased pressure results in the heart being overworked in its attempt to pump blood through the body.  There are two stages of hypertension.  Stage 1 is defined as having a blood pressure of 140-159/90-99, and stage 2 is defined as having a blood pressure of 160 and above/100 and above.  Having hypertension does not always mean that an individual will have obvious symptoms (as nearly 1/3 of the individuals with the disease do not know they have it), but some of the more common symptoms include headache, fatigue, chest pain, irregular heartbeat, blood in the urine, and difficulty breathing.10

Just as with diabetes, treatment for hypertension can include lifestyle adjustments, such as lowering sodium intake, losing weight, quitting smoking, and increasing physical activity.  Oral medications, such as ACE inhibitors and beta-blockers, are also available and used to treat the disease.  However, just as monitoring blood sugar is vital for the diabetic patient, monitoring blood pressure is also important for the individual with hypertension.10

 

Defining Self-Management Education

According to Dr. Kate Lorig, a leader in the field of chronic disease management, every patient with a chronic disease is involved in self-management, whether or not it is effective in improving quality of life.  Stated simply, “one cannot not manage.”6  However, Lorig defines self-management education as, “learning and practicing the skills necessary to carry on an active and emotionally satisfying life in the face of a chronic condition.”11  One notices immediately how the definition of self-management education sounds quite a bit like the definition of patient empowerment.

            It was with these definitions in mind that Dr. Kate Lorig and the Stanford Patient Education Research Center (in Palo Alto, CA) have spent over 25 years developing and testing various self-management education programs.  Some of the products of their efforts are the English and Spanish Arthritis Self-Management Programs, the Positive Self-Management Program (for people with HIV/AIDS), and the Chronic Disease Self-Management Program (CDSMP),6 which is the focal point of the remainder of this chapter.  All of these self-management programs have been tested and validated through randomized trials lasting anywhere from four to twelve months. The results of the Arthritis Self-Management Program and the CDSMP have also been replicated internationally and in diverse populations.12-16

 

Key Concepts of the CDSMP

            Traditionally, disease course is viewed in the waxes and wanes of physiological symptoms.  However, Patterson points out that disease course can also be viewed in the shifting perspectives of the patient.  Sometimes the patient has wellness on his/her mind and sometimes illness.17  Lorig emphasizes that effective self-management education, if based on this paradigm, should be patient-centered and cognizant of the patient’s perceived needs.6  In order to achieve this end, the CDSMP incorporates three major components and teaches five major self-management skills.  In order to further explain these components and skills, examples will be given using a hypothetical diabetic patient.

 

Three Major Components

            Included in all of the Lorig’s self-management programs is education on three major components of effective self-management:  medical management, role management, and emotional management (these three concepts were first discussed by Corbin and Strauss in their 1988 qualitative work).18  Medical management includes adhering to medical regimens or physician advice.  Role management involves maintaining, changing, or creating new life roles.  And finally, emotional management involves treating the anger, fear, frustration, and depression of having a disease as part of the disease itself.  In other words, to manage the emotions of a chronically ill person is to manage the disease as well.6

 

Example A: The Hypothetical Diabetic Patient – “Anne” - 35 years old

Medical management:   Anne must learn how to adhere to the medical treatment regimen that comes with being diabetic.  This includes remembering when to check her blood sugar, when to take her medication or give herself insulin, and what types of foods should be avoided or eaten in moderation.  She is also overweight, and her doctor recommended that she find ways to incorporate more physical activity in her daily routine.

Role management:  Anne, who is also a busy mother and a member of the workforce, must learn how to manage her time in the mornings.  Normally she is responsible for getting her children up on time, making them breakfast, packing their lunches, and getting them off to school.  She barely has time to get ready herself and does not normally eat breakfast.  Now that she knows that she is diabetic, she also knows that she needs to take the time in the morning to check her blood sugar, eat breakfast, and take her medication.  This might involve shifting some of her responsibilities of taking care of the children to her husband in the mornings.

Emotional management:  Anne might, quite understandably, be afraid of the complications that can arise from the disease.  She might also be frustrated and angry at the fact that she has to deal with being diabetic for the rest of her life.  She might find comfort and hope in a local diabetic support group.

 

Example B:  The Hypothetical Hypertension Patient – “Jim” – 56 years old

Medical management:  Jim must become accustomed to the medical regimen that he has been advised to follow by his primary care physician.  He must check his blood pressure regularly with a home-monitoring device, remember when to take his beta-blocker that was prescribed to him, and adhere to the nutritional advice that was given to him (such as avoiding high sodium foods).

Role management:  Jim is still a member of the workforce and often works 50 to 60 hour weeks.  Given his schedule, he is usually stressed, eating on the run, and not very physically active.  When he was diagnosed with hypertension, it became clear to Jim that he needed to redefine his role at the company and cut back on his hours, so that he could make some important lifestyle modifications.

Emotional management:  After his diagnosis, Jim became stressed with the worry that he might have a heart attack.  He became pre-occupied with this worry and decided it might be best if he took a stress-management course to learn ways to cope with the worry that came with the diagnosis.

 

Five Major Self-Management Skills

There are also five major self-management skills that are taught in the CDSMP -  problem solving, decision-making, resource utilization, forming a patient/healthcare provider partnership, and taking action in reasonable steps.6

 

Example A:  The Hypothetical Diabetic Patient – “Anne” - 35 years old

Problem solving:  Anne complains that she can no longer go out with her friends.  Since part of problem solving is defining the problem, she decides to clarify the problem that she is having.  She used to go out with her friends once a week for dessert.  Now that she knows that she needs to stay away from high-sugar foods, she does not feel like going out with her friends and watching them eat foods that she no longer can.  She talks with her friends about this, and they collectively decide to go to a new restaurant that offers sugar-free desserts.

Decision-making:  Anne has been watching her diet, checking her blood sugar regularly, and taking her medication.  However, she notices that her blood sugar level is staying fairly high throughout the day.  She has also been feeling fatigued.  She decides that it would be a good idea to contact her doctor.

Resource utilization:  Anne would like to learn more about diabetes, and would like to use the Internet to do so.  However, when she begins to do some searching, she finds a multitude of websites.  She uses what she has learned about what makes a website reputable and begins to sort through them to find good information.

Patient/Healthcare provider partnership:  Anne has never had a chronic disease before, and up until now, has been used to going to the doctor with a problem, having him prescribe something, and then after awhile, the health problem is resolved.  Now, she has learned that she needs to take a more active role in her healthcare.  She now keeps a daily log of her blood sugar as well as what she eats.  She brings this log with her every time she goes to the doctor.

Taking action:  Anne has decided that she would like to lose some weight and do so by being more physically active.  She was unsure at first about how successful she would be at creating an exercise plan for herself, so she decided to do it gradually.  Her first goal was to make it a point to take the stairs instead of the elevator when she was in a building and was going no higher than three floors up.  She was very confident that she could do this and made it her goal that she would for the next two weeks.

 

Example B:  The Hypothetical Hypertension Patient – “Jim” – 56 years old

Problem solving:  Jim is used to eating on the run and often stops at fast food restaurants for lunch because it is convenient.  His doctor tells him he must cut out this type of food, but he does not know what he will eat instead.  He solves the problem by buying a small cooler that he can pack his lunch in and take with him wherever he needs to go.

Decision-making:  Jim starts an exercise routine in an effort to become more active and lose weight.  He begins jogging every day but finds that he is out of breath and very fatigued when he finishes, almost to the point of nausea.  Although his intentions were good, he realizes that he has jumped in too quickly and decides that it would be a good idea for him to move more gradually towards the exercise routine that he would like to incorporate in his daily life. 

Resource utilization:  Jim decided that he would like to educate himself on the topic of hypertension and decided to begin searching for research articles.  In order to find good articles, he visited his local library and spoke with a librarian about the many article databases that exist and how to do effective searches to find what he wanted to know.

Patient/Healthcare provider partnership:  Jim began keeping a diary of his blood pressure, when he takes his medication, and the foods that he is eating.  At each doctor’s visit, he brings the diary with him to help his doctor make decisions about his care.  He also writes a list of the questions that he would like answered at each doctor’s visit and brings that with him as well.

Taking action:  Jim realizes that eating healthier is an important step in managing hypertension.  In order to do this, he decides to incorporate more fruits and vegetables in his diet.  To do this, he makes a reasonable goal of eating at least one piece of fruit everyday for the next two weeks.  He decides he is very confident of this goal and commits to it.

 

Outcomes of the CDSMP

            A number of important outcomes have been observed in the randomized trials that tested the effectiveness of the CDSMP.  First, it was reported that there were significant improvements in healthy behavior, such as an increase in the number of minutes of exercise per week and increased use of cognitive symptom management techniques, such as relaxation.  It was also noted that improvement in communication with physicians occurred.  Participants of the program also reported positive changes in health status, such as less pain, fatigue, and worry about their disease(s).  And finally, and to some most importantly, significant decreases in healthcare utilization were reported from those who participated in the program.6,12-15,19,20

 

Self-Management Education and Self-Efficacy               

            In the beginning of Dr. Lorig’s work at the Stanford Patient Education Research Center, it was thought that positive outcomes, such as improved health status, would come from improvements in healthy behavior.  However, the preliminary analyses showed weak to nonexistent connections between the two outcomes.21  In subsequent qualitative studies, it was reported that those who had improvements in health status felt that the program had enabled them to have more control over their illness.  This lead Dr. Lorig and her colleagues to investigate the concept of self-efficacy, or an individual’s perception that he/she has the power to produce a desired effect.  It was thought that increases in self-efficacy might be associated with the desired outcomes.6

In future research studies that tested this hypothesis, it was found that both baseline self-efficacy and changes in self-efficacy scores were significantly associated with improvements in health status.12,22  Given this, and the fact that many other studies have shown associations between self-efficacy and health status,23 the four important ingredients of self-efficacy enhancement were permanently integrated into the CDSMP.  The four important ingredients are performance mastery or creating action plans, modeling (i.e. having peers who practice effective self-management teach the course), interpretation of symptoms (i.e. understanding that symptoms can have multiple causes), and social persuasion (i.e. surrounding oneself with those who are practicing effective self-management).6   It should be noted that modeling and social persuasion are often accomplished by having the patient attend support group meetings that are culturally competent and attended by individuals in similar situations.

 

Example:  The Hypothetical Diabetic Patient – “Anne” - 35 years old

Performance mastery:  After Anne made it a goal to take the stairs instead of elevators, she realized that it was possible to take small steps in the right direction to becoming a more active person.  She made this a permanent goal and decided to make another goal of taking a 15-minute walk two nights of the week for the next month.  She feels very confident that she will be able to do this.

Modeling:  Anne was taught the CDSMP by two individuals who also had diabetes.  Those course leaders were both involved in self-management and were doing really well with their diabetes.  She was inspired by that and hopeful that she could do the same.

Interpretation of symptoms:  Anne has found that she does not have as much energy as she would like, and this seems to be getting in the way of her taking her 15-minute walks twice a week.  She understands, however, that it may not be the diabetes that is causing this fatigue.  She realizes that she has not been eating a very balanced diet and decides to incorporate better eating habits into her life.

Social persuasion:  Anne has found that being in the diabetic support group has been very helpful.  She has not only made many friends who are supportive of her, but she has also learned new coping strategies and even some new recipes that make it easier for her to eat well as a diabetic.

 

Example B:  The Hypothetical Hypertension Patient – “Jim” – 56 years old

Performance mastery:  Jim’s goal of eating more fruits and vegetables is going well.  He found that eating one piece of fruit each day was not bad at all.  He makes this a permanent goal and decides to set a new goal of eating fruit with at least two meals every day.  He is confident that he will be able to do this.

Modeling:  Jim found an online support group for people with hypertension and has learned from his peers that you can manage it, live a healthy lifestyle, and be happy all at the same time.  He is inspired by the positive stories that he hears and is confident that he can do the same.

Interpretation of symptoms:  When Jim was first diagnosed, he thought that all the fatigue he was feeling was due to the high blood pressure.   However, even after he brought his blood pressure down, he was finding himself still very tired all the time.  He realized that the stress in his life was also wearing him down, and that’s when he decided to take the stress-management course.

Social persuasion:  Jim joined his local YMCA and has met other men his age dealing with hypertension.  They have shared some of their success stories with him, and he meets with them regularly to exercise together.

 

Integrating Self-Management Education Into Our Healthcare System

          Given the fact that the CDSMP has demonstrated effectiveness in improving outcomes and costs associated with chronic illness, it seems that the next logical step would be integrating it, and programs like it, into the standards of medical care for individuals with chronic disease in the U.S.  To some extent, this has happened through its integration into three major HMO’s - Kaiser Permanente, the Group Health Cooperative of Puget Sound, and the Health Insurance Plan of New York.  However, it is suggested that three major things need to happen before self-management can be fully and effectively integrated – preparation of the health system, preparation of the patients themselves, and ensuring an adequate financial commitment from the insurance industry.6

 

Preparing the Healthcare System

            In the U.S. healthcare system, self-management education is generally offered by volunteer healthcare agencies, such as the Mended Hearts program sponsored by the American Heart Association.24  There has also been some attempt by the public health system and the Centers for Disease Control and Prevention to integrate statewide programming for diseases like arthritis and diabetes.6

            However, it could be argued that self-management education is best placed in clinical settings, where it would be linked to standard medical care and could help foster effective patient-provider partnerships.  Although this is certainly the ideal, certain barriers do exist.  Many healthcare organizations do not have the structure or the trained staff to support self-management programming, and even with the needed personnel do exist, they are generally not seen as central to the mission of the organization.    In order for self-management education to be integrated, “buy-in” would need to exist among the important decision-makers, and there would also need to be a significant commitment to training the needed staff to sustain such programming.6

 

Preparing the Patients

            In the 20th century, public expectations for medical care shifted from individuals, families, and communities to healthcare systems and institutions.  With this shift in expectation, patients are now accustomed to looking to those healthcare providers and institutions for disease prevention, treatment, and cure.  This means that personal responsibility for the management of disease is not usually on the individual or his/her family and community.  If self-management education is to be presented as an acceptable option to today’s patients, social marketing campaigns will be needed, physicians will need to actively refer patients (and express to their patients why self-management is important), and options for access to self-management education will need to be offered (such as through group sessions, telephone counseling, and Internet-delivered programs).6

 

Securing a Financial Commitment from the Insurance Industry

            Even with the needed “buy-in” from both healthcare professionals and patients, self-management education cannot be integrated without adequate financing.  Currently, little funding exists from government insurance providers, such as the Centers for Medicare and Medicaid Services, the U.S. Department of Veteran Affairs, or state Medicaid programs.  This lack of coverage is generally due to the difficult time that providers and payers have in identifying effective programs that are applicable to large populations of people.  However, programs such as the CDSMP, once shown to meet the standards of effectiveness, should be fully funded just as any other treatment or medication would.  If the program truly is effective in increasing health-related quality of life and decreasing healthcare utilization, this would most likely mean that the insurance companies would not be billed for as many doctor’s visits or healthcare services.

Effectiveness should not be the only reason for insurance companies to provide coverage for this program, as there are other financial incentives built into the very structure of the program.  First of all, the program is offered in a group setting, which costs less than individual or one-on-one care, and it is also offered by lay individuals and not necessarily health professionals, which means that the insurance companies would not be billed for any extra doctor time.  In other words, patients can receive the same important message that could technically be provided by the physician in the context of a healthcare visit, but in a more cost-efficient setting.  The other major benefit to this program is that long-term results have been shown.  It would seem extremely beneficial for insurance companies to offer this service, which has clear boundaries (6 sessions total) and can offer long-term benefit well beyond those boundaries. 

It is also worth noting that Health Savings Accounts (HSA’s) (fed by tax-deferred money from an individual’s paycheck) could also provide another avenue for coverage for these types of patient programs, if the patients themselves deem it a worthwhile expenditure. 

 

Conclusions

            The CDSMP and other types of self-management education may have an important place in the U.S. healthcare system.  Current models of successful use of the program, such as Kaiser Permanente (who awarded the CDSMP the James A. Vohs Award for Quality in 2001),25 should be evaluated to better understand how self-management education can be integrated and sustained to improve the health outcomes of chronic disease patients.  It is with these efforts to empower patients that the U.S. healthcare system may be able to better the lives of its citizens and reduce the healthcare costs that will only rise as our population ages.

 

Other Sources of Information

For readers who wish to explore the topic further, visit the Stanford Patient Education Research Center’s website at http://patienteducation.stanford.edu/ or explore the listed references for more details on the topics discussed in this chapter.

 

References

1 Hoffman C, Rice D, Sung HY.  Persons with chronic conditions: their prevalence and costs. JAMA.  1996;276:1473-9.

 

2 Partnerships for Solutions.  Chronic conditions: Making the case for ongoing care.  Baltimore: The Johns Hopkins University, 2002.

 

3 Holman H, Lorig K.  Patient self-management: A key to effectiveness and efficiency in care of chronic disease.  Public Health Reports.  2004;119:239-43.

 

4 Weiner KA.  Empowering the pain patient to make treatment decisions.  Home Health Care Management and Practice.  2003;15:198-202.

 

5 Todd WE, Ladon EH.  Disease management: Maximizing treatment adherence and self-management.  Disease Management & Health Outcomes. 1998;3:1-10.

 

6  Lorig KR, Holman HR.  Self-management education: History, definition, outcomes, and mechanisms.  Annals of Behavioral Medicine.  2003;26:1-7.

 

7 National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).  National Diabetes Information Clearinghouse (NDIC).  National Diabetes Statistics.  (Accessed May 2, 2006, at http://diabetes.niddk.nih.gov/dm/pubs/statistics/index.htm#7)

 

8 WrongDiagnosis.com.  Statistics about Hypertension.  (Accessed May 2, 2006, at http://www.wrongdiagnosis.com/h/hypertension/stats.htm)

 

9 WebMD.  Diabetes: Your Guide to Diabetes.  (Accessed May 2, 2006, at http://www.webmd.com/content/article/45/1667_50910.htm#1)

 

10 WebMD.  Hypertension: Blood Pressure Basics.  (Accessed May 2, 2006, at http://www.webmd.com/content/article/96/103783.htm)

 

11 Lorig K.  Self-management of chronic illness: A model for the future.  Generations.  1993;17:11-4.

 

12 Lorig K, Gonzalez V, Ritter P.  Community-based Spanish language arthritis education program: A randomized trial.  Medical Care.  1999;37:957-63.

 

13 Barlow J, Williams B, Wright C.  Patient education for people with arthritis in rural communities: The UK experience.  Patient Education Counsel.  2000;1451:1-10.

 

14 Chui D, Poon P, Lee E, et al.  Self-management programme for rheumatoid arthritis in Hong Kong.  British Journal of Therapy Rehabilitation.  1998;5:477-81.

 

15 Goeppinger J, Arthur M, Baglioni AJ, et al.  A re-examination of the effectiveness of self-care education for persons with arthritis.  Arthritis and Rheumatism.  1989;32:706-16.

 

16 McGowan P, Green L.  Arthritis self-management in native populations of British Columbia: An application of health promotion and participatory research principle in chronic disease control.  Canadian Journal of Aging.  1995;14:201-12.

 

17 Patterson B.  The shifting perspective model of chronic illness.  Journal of Nursing Scholarship.  2001;First Quarter:21-6.

 

18 Corbin J, Strauss A.  Unending work and care: Managing chronic illness at home.  San Francisco: Jossey-Bass, 1988.

 

19 Lorig K, Laurin J, Holman H.  Arthritis self-management: A study of the effectiveness of patient education for the elderly.  Gerontologist.  1984;24:455-7.

 

20 Lorig K, Sobel D, Stewart A, et al.  Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial.  Medical Care.  1999;37:5-14.

 

21 Lorig K, Seleznick M, Lubeck D, et al.  The beneficial outcomes of the arthritis self-management course are not adequately explained by behavior change.  Arthritis & Rheumatism.  1989;32:91-5

 

22 Lorig K, Ung E, Chastain R, et al.  Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis.  Arthritis & Rheumatism.   1989;32:37-44.

 

23 Bandura A.  Self-Efficacy: The Exercise of Control.  New York: W.H. Freeman, 1997.

 

24 Mended Hearts, Inc.  (Accessed April 24, 2006, at http://www.mendedhearts.org/)

 

25 Lorig KR, Hurwicz M, Sobel D, et al. A national dissemination of an evidence-based self-management program: A process evaluation study.  Patient Education & Counseling.  2005;59:69-79.