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A patient-centered approach to chronic disease management
Mary Gayle Sweet, MDDr. Sweet is the Assistant Director for Family Practice Education at the Carilion Family Medicine Residency Program, Roanoke, Va. Her areas of interest include chronic disease management, behavioral medicine, and end-of-life care. This article was prepared by Dr. Sweet and JAAPA editor in chief Sarah Zarbock, PA-C, and is based on Dr. Sweet's presentation at Innovations and Best Practices in Patient Adherence, an invitational meeting sponsored by the Physician Assistant Foundation and the American Academy of Physician Assistants, Washington, DC, April 20-21, 2004.By collaborating effectively with patients who have chronic disease, clinicians can provide the kind of care that increases adherence, improves outcomes, and promotes better quality of life.
The current practice of outpatient medicine is based on an acute care model: short visits that allow limited time for information gathering and demand an advice-giving or a "fix it" response from the clinician. In the office setting, however, clinicians no longer see primarily acute problems. Instead, the majority of visits are for the management of chronic diseases and their exacerbations. Unlike treatment for acute illnesses, which often respond to one or two focused interventions, optimal care for chronic diseases demands that the patient pay attention, minute by minute and day by day, to diet, physical activity, self-monitoring, and medication use. To equip patients with the knowledge and skills required to care for their problems, clinicians need to provide an extensive amount of education and support. The limited time given for office appointments makes providing comprehensive care a challenge. Consider the many changes we ask our patients to make. In a fix-it model of care, advice given to a patient with diabetes may sound like this: "To better control your diabetes and prevent complications, I recommend that you lose 40 pounds, exercise for 40 minutes four days a week, stop smoking, and take these three medications as directed. I'd like to see you back for a recheck and lab work in three months." In short visits, however, the time needed to teach and reinforce the self-management skills that will enable the patient to carry out this advice is not available. Clinicians know the results of the fix-it approach to care: dismal rates of patient adherence to recommended behavior changes and medical regimens. By using a more patient-centered approach, clinicians can provide more effective care of chronic diseases in small steps, over time. This extended process allows the patient and clinician to collaboratively set goals that are pertinent to and attainable by the patient, resulting in improvements in adherence, outcomes, and quality of life. In 2001, the Institute of Medicine described patient-centered care as "being respectful of and responsive to individual patients' preferences, needs, and values and ensuring that patient values guide all clinical decisions."1 The clinician's role, then, is to help patients find goals that are more relevant to them and then use those goals to develop the patient-specific plan. Collaboratively set goalsBe curious! Explore the patient's understanding of the disease, evaluations, treatment options, and possible outcomes by asking open-ended questions: "Tell me what you understand about your diabetes." "What do you think contributes to your high blood pressure?" "What do you most fear about your lung disease?" "What do you most hope for with regard to your heart condition?" "How does this problem most affect your daily life?" "What is the hardest thing about having this problem?" Answers to questions like these can help you to set goals that are expressed in the patient's words (and reflect the patient's values) instead of in a clinician's more numbers-focused language. Use a variety of approaches to patient education. Use the data collected at visits to create visuals for the patient: graphs of trends in weight, BP, glycosylated hemoglobin (A1C), lipid measurements, and so forth. Creating these visual aids is especially easy if your practice uses an electronic medical record (EMR). On these graphs, the goals can be highlighted and contrasted with current numbers. Such personalized patient handouts outlining objective data and optimal goals are powerful tools. For patients with diabetes, such handouts might list the following goals: fasting blood glucose less than 126 mg/dL, A1C less than 7%, LDL cholesterol less than 100 mg/dL, systolic BP less than 130 mm Hg, diastolic BP less than 80 mm Hg, annual ophthalmologic exam, routine foot exam, and immunizations. The handout can be designed to include the patient's own test results, BP readings, and documented dates of eye exams and immunizations. An EMR can automatically enter this information into a predesigned handout. Using such a handout at each visit reminds both the patient and clinician to be attentive to these goals and details. For PAs who do not have access to an EMR, form letters can be easily generated and the PA or a nurse can review the record to complete the letter before or during patient visits. Hand-held technology can also be used to help educate and motivate patients who must make difficult decisions about self-care. For example, clinicians can use programs like the National Cholesterol Education Program risk assessment tool (from http://hin.nhlbi.nih.gov/atpiii/atp3palm.htm ) downloaded into a PDA to enter patient data (sex, age, BP, LDL and HDL cholesterol levels, smoking status) and calculate the risk that the patient has for having a myocardial infarction in the next 10 years. Seeing this number may have an enormous impact on the patient's desire to make behavior changes or to take medications that have been recommended. This type of personalized information is important when educating and negotiating goals with patients. Set a limited number of mutually agreed-upon, clearly stated goals. Be aware! The clinician's goals, and the ways in which our quality of care is assessed, are usually objective—for instance, we want to achieve a BP of less than 140/90 mm Hg and an A1C of less than 7%. In contrast, a patient's goals are usually less objective—to feel better, to spend less money on medications, to be able to walk to the market, to live to see a child get married. These goals, however, are not usually mutually exclusive. When setting goals with patients, focus on one or two objectives at a time. Make the goal clear by stating it in terms that reinforce the patient's values, and ask if the patient feels that the goal is important and attainable. For example, you might say, "I understand that your medications are expensive and that it is important to you to stop one or more of these. I feel the most effective way for you to do this is to lose 25 pounds in the next six months, as this will allow for better control of your diabetes. If you follow a 1,500-calorie-a-day diet, I'm confident that you'll lose this weight. Is this a goal that you want to work toward? Do you feel that you can do this?" Encourage the patientPatient follow-up is crucial, but routine follow-up every 3 to 6 months—the standard interval for many chronic medical problems—is far too long when you are actively working with a patient to make difficult behavioral changes and to achieve challenging goals. Follow-up visits are ideal times to assess adherence and to be a nonjudgmental, enthusiastic advocate for the patient. During these visits, goals are reassessed, successes celebrated, barriers discussed, and new goals set. The visit also provides an opportunity to reassess laboratory results and, if necessary, to establish new goals for those. EMRs can greatly augment the process of encouragement and accountability. For instance, after an office visit, you can make a notation in the record to prompt you in 2 weeks to send a quick note or to give the patient a call to assess progress. These personal reminders are powerful ways to enhance the patient-clinician relationship and to motivate the patient to do the hard work of change. Use disease management programsWith many chronic diseases, optimal patient education about minute-to-minute and day-to-day management is best done in formal disease management programs and then reinforced during office sessions. Many such programs are available. These programs provide very practical self-management education and hands-on activities that help patients and their families to gain the skills needed to manage diseases such as diabetes, chronic obstructive pulmonary disease (COPD) and asthma, congestive heart failure (CHF), and coronary artery disease. The most common programs are pulmonary rehabilitation, cardiac rehabilitation, CHF management classes, diabetes self-management classes, and asthma education. These are commonly offered through large hospitals and health systems. Most programs consist of multidisciplinary group education sessions facilitated by a variety of health care professionals: dieticians, exercise physiologists, nurses, and clinicians who can help guide discussions. Other patients in the groups often have a wealth of practical experience to share that can help patients in the day-to-day management of their diseases. Research data on these programs are compelling. They show that patients who attend these disease management courses have improved clinical outcomes, fewer hospitalizations, and improved self-efficacy and quality of life.2-7 When available, these courses should be an integral part of care. TroubleshootDespite our best attempts at helping to motivate patients to take ownership of their problems and make improvements, we too often encounter those whose problems are not improving or are worsening. When we investigate, we learn that the patient has made no significant changes in diet, exercise, or medication adherence. At this point, employing a "decision balance" grid can be useful. Richard Botelho, MD, author of Motivational Practice: Promoting Healthy Habits and Self-Care of Chronic Diseases, has developed such a tool.8 It prompts the patient to name a behavior and a possible behavior change. The patient is then asked to list the answers to four questions. Take, for example, a patient who is contemplating smoking cessation but who has not quit after several visits addressing this goal. The patient is asked to name the behavior—smoking—and then to name the behavior change—smoking cessation. He or she is then asked to look at the decision balance grid and to list responses for each of the four categories: • What are the benefits of continuing to smoke? (Fitting in with friends who smoke? Battling anxiety?) • What are your concerns about continuing to smoke? (Cost? Developing COPD? Difficulty exercising because of shortness of breath?) • What concerns do you have about quitting smoking? (Loss of friendships? Fear of uncontrolled anxiety? Fear of telling others you're trying to quit and then failing?) • What would be the benefits if you were able to successfully quit? (Ability to play basketball? More money to spend on other things? Gain respect of nonsmokers at work? Decreased fear about health?) As a result of this activity, the patient and clinician often gain powerful insights into social, psychological, and financial barriers to behavior change. Raising these issues permits a richer, more personal discussion about the goals of care and thus increases the likelihood that the patient will achieve mutually determined goals. It also gives the clinician insights into how to better motivate the patient. ConclusionThe Institute of Medicine report states there is a "quality chasm" in our health care system today,1 and this certainly applies to the spectrum of chronic disease management. The tension between the need to deliver comprehensive care and the time allotted to do so can be met effectively only by changing the way we manage our visits: by conducting patient-centered, goal-focused care; working collaboratively with formal patient education programs; and continually looking for ways to educate and motivate patients to better care for themselves.
REFERENCES 1. Committee on Quality of Health Care in America, Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Pr; 2001. Available at: http://www.iom.edu/report.asp?id=5432 . Accessed September 13, 2004. 2. Thompson D. The effectiveness of cardiac rehabilitation. Nurs Crit Care. September-October 1996;1:214-220. 3. McConnell TR, Laubach CA, Memon M, et al. Quality of life and self efficacy in cardiac rehabilitation patients over 70 years of age following acute myocardial infarction and bypass revascularization surgery. Am J Geriatr Cardiol. July 2000;9:210-218. 4. Rich MW, Beckham V, Wittenberg C, et al. A multidisciplinary intervention to prevent the readmission of elderly patients with congestive heart failure. N Engl J Med. 1995;333:1190-1195. 5. Bourjeily G, Rochester CL. Exercise training in chronic obstructive pulmonary disease. Clin Chest Med. 2000;21:763-781. 6. Chiquette E, Amato MG, Bussey HI. Comparison of an anticoagulation clinic with usual medical care: anticoagulation control, patient outcomes, and health care costs. Arch Intern Med. 1998;158:1641-1647. 7. Padgett D, Mumford E, Hynes M, Carter R. Meta-analysis of the effects of educational and psychosocial interventions on management of diabetes mellitus. J Clin Epidemiol. 1988;41:1007-1030. 8. Botelho RJ. Motivational Practice: Promoting Healthy Habits and Self-Care of Chronic Diseases. MHH Publications; 2004.
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