Patient Self-Management of Chronic Disease in Primary Care

INNOVATIONS IN PRIMARY CARE

Patient Self-management of Chronic Disease in Primary Care

Thomas Bodenheimer, MD Patients with chronic conditions make day-to-day decisions about—self- Kate Lorig, RN, DrPH manage—their illnesses. This reality introduces a new chronic disease para- Halsted Holman, MD digm: the patient-professional partnership, involving collaborative care and Kevin Grumbach, MD self-management education. Self-management education complements traditional patient education in supporting patients to live the best possible Patient Self-management of quality of life with their chronic condition. Whereas traditional patient edu- Chronic Disease in Primary Care cation offers information and technical skills, self-management education The nation’s 65-year-and-older popula- teaches problem-solving skills. A central concept in self-management is self- tion will swell from 35 million in 2000 to 53 million in 2020 as the baby- efficacy—confidence to carry out a behavior necessary to reach a desired goal. boomer generation reaches the age of in- Self-efficacy is enhanced when patients succeed in solving patient- creased chronic disease prevalence. Many identified problems. Evidence from controlled clinical trials suggests that (1) baby boomers bring to the health care programs teaching self-management skills are more effective than information- system a high level of sophistication. In only patient education in improving clinical outcomes; (2) in some circum- the view of one analyst, baby boomers stances, self-management education improves outcomes and can reduce costs “will accelerate the movement and for arthritis and probably for adult asthma patients; and (3) in initial stud- awareness of self-care and wellness and will irreversibly alter the traditional doc- ies, a self-management education program bringing together patients with tor-patient relationship.”1 a variety of chronic conditions may improve outcomes and reduce costs. Self- What is the “irreversibly altered doc- management education for chronic illness may soon become an integral part tor-patient relationship”—a consum- of high-quality primary care. erist fad or a genuine transformation of JAMA. 2002;288:2469-2475 www.jama.com health care? Will primary care physicians—who care for most people with tional relationship and the patient- glucose intolerance, and his blood pres- chronic illness—be ready for this new professional partnership. These are, in sure is above normal. Determined to relationship? fact, poles of a spectrum rather than prevent an early death, he has altered In this fourth article of the series “In- wholly distinct concepts. The contrast- his diet, initiated regular exercise, pur- novations in Primary Care,” we re- ing paradigms are described in rela- chased glucose and blood pressure sume the discussion of chronic illness tion to 2 aspects of chronic illness man- monitoring devices, and he also takes management initiated in the article “Im- agement: clinical care and patient blood pressure medications regularly. proving Primary Care for Patients with education. This first section of the ar- He has a happy family and work life Chronic Illness: The Chronic Care ticle ends with a description of self- with a comfortable income. Model.”2 According to the Chronic Care management education in chronic dis- Ralph’s brother Ricky, with identi- Model, optimal chronic care is achieved ease. The second section of the article cal chronic problems, is divorced and when a prepared, proactive practice team explores whether self-management edu- interacts with an informed, activated pa- cation can improve clinical outcomes Author Affiliations: Department of Family and Com- tient. The new patient-physician rela- or reduce health care costs. munity Medicine, University of California, San Fran- cisco (Drs Bodenheimer and Grumbach); and Depart- tionship for chronic disease features in- ment of Medicine, Stanford University, Palo Alto, Calif formed, activated patients in partnership In Chronic Illness, Patient (Drs Lorig and Holman). Self-management Is Inevitable Corresponding Author: Thomas Bodenheimer, MD, with their physicians. San Francisco General Hospital, Ward 83, 1001 Potrero This article begins by discussing 2 Ralph Brothers’ parents both died of Ave, San Francisco, CA 94110 (e-mail: tbodie@earthlink .net). versions of the patient-physician rela- acute myocardial infarctions at an early Section Editor: Drummond Rennie, MD, Deputy Edi- tionship in chronic disease, the tradi- age. Ralph inherited dyslipidemia and tor, JAMA.

©2002 American Medical Association. All rights reserved. (Reprinted) JAMA, November 20, 2002—Vol 288, No. 19 2469 INNOVATIONS IN PRIMARY CARE cares for his developmentally disabled the table besides their illness. In chronic If physicians view themselves as experts son with serious behavior problems. disease, however, a new paradigm whose job is to get patients to behave in ways that reflect that expertise, both will Even though he visits his family prac- is emerging: people with chronic continue to be frustrated....Oncephysi- titioner on a regular basis, Ricky has conditions are their own principal cians recognize patients as experts on their gained weight, developed diabetes, and caregivers, and health care profession- own lives, they can add their medical ex- has been unable to control his lipid lev- als—both in primary and specialty pertise to what patients know about them- els, glucose levels, and blood pres- care—should be consultants support- selves to create a plan that will help patients achieve their goals.7 sure. He views his main problem as his ing them in this role.4 son rather than his chronic illnesses. This partnership paradigm em- Sometimes called “patient empow- Patients with chronic conditions self- braces 2 components that are concep- erment,” this concept holds that pa- manage their illness. This fact is ines- tually similar but clinically separable. tients accept responsibility to manage capable. Each day, patients decide what The components are collaborative care their own conditions and are encour- they are going to eat, whether they will and self-management education. Col- aged to solve their own problems with exercise, and to what extent they will laborative care is a description of the information, but not orders, from pro- consume prescribed medications. Ac- patient-physician relationship in which fessionals. The paradigm views inter- cording to some researchers, physicians and patients make health nal motivation as more effective for life- Patients are in control. No matter what we care decisions together. Self-manage- style change than external motivation as health professionals do or say, patients ment education takes place in the realm (making changes to please the physi- are in control of these important self- of patient education and includes a plan cian).8,9 The ideas of patients and phy- management decisions. When patients leave that provides patients with problem- sicians interact, building upon each the clinic or office, they can and do veto rec- solving skills to enhance their lives.5,6 other to create a better outcome. ommendations a health professional makes.3 In traditional care, medical profes- The question is not whether patients sionals may blame patients for their Collaborative Care with chronic conditions manage their ill- shortcomings.10 They may say things ness, but how they manage. Ralph man- The partnership paradigm credits pa- about patients like: “He’s noncompli- ages well; Ricky does not. tients with an expertise similar in im- ant with his pills” or “She refuses to portance to the expertise of profession- check her blood sugars.” In collabora- The Patient-Physician Partnership als. This paradigm implies that while tive care (TABLE 1), when physicians Traditional views regard physicians professionals are experts about dis- accept the validity of patient-defined and other health professionals as eases, patients are experts about their problems, the concepts of compliance experts, with patients bringing little to own lives. and adherence—based on physician identification of problems and pa- Table 1. Comparison of Traditional and Collaborative Care in Chronic Illness tients failing to solve physician- 3 Issue Traditional Care Collaborative Care defined problems—no longer apply. What is the relationship Professionals are the experts Shared expertise with active For a diabetic patient, avoiding a ter- between patient and who tell patients what to patients. Professionals are rifying hypoglycemic reaction today health professionals? do. Patients are passive. experts about the disease and patients are experts may have a higher priority than tight about their lives. glycemic control to prevent renal dis- Who is the principal caregiver The professional. The patient and professional are ease 15 years from now. Hypoglyce- and problem solver? the principal caregivers; they Who is responsible for share responsibility for mia, not future renal disease, is the pa- outcomes? solving problems and for tient’s view of the problem. For some outcomes. patients, the treatment (diet, swallow- What is the goal? Compliance with instructions. The patient sets goals and the ing pills, going to physicians), rather Noncompliance is a professional helps the patient personal deficit of the make informed choices. Lack than the disease, is the main problem. patient. of goal achievement is a “Noncompliance,” appearing irratio- problem to be solved by modifying strategies. nal to the professional, may be a ratio- How is behavior changed? External motivation. Internal motivation. Patients gain nal choice from the patient’s view- understanding and point.10 confidence to accomplish new behaviors. Dr Marjorie Fine, Ricky’s primary How are problems identified? By the professional, eg, By the patient, eg, pain or care physician, regularly performed all changing unhealthy inability to function; and by of Ricky’s periodic diabetic studies, pa- behaviors. the professional. tiently counseled him on diet and ex- How are problems solved? Professionals solve problems Professionals teach for patients. problem-solving skills and ercise, and prescribed the most effec- help patients in solving tive medications at the correct doses. problems. Dr Fine tried her best to help Ricky

2470 JAMA, November 20, 2002—Vol 288, No. 19 (Reprinted) ©2002 American Medical Association. All rights reserved. INNOVATIONS IN PRIMARY CARE solve the obvious problem of inad- nesses were more likely to demon- ing blood sugar; (2) creating and main- equate management of chronic ill- strate participatory decision making. taining new meaningful life roles ness. regarding jobs, family and friends; and When Dr Fine left on maternity leave, Self-management Education (3) coping with the anger, fear, frus- the physician who replaced her started Traditional patient education imparts tration, and sadness of having a chronic by asking Ricky, “What is your most disease-specific information and tech- condition.13 important problem?” Never having nical skills. Patients with diabetes gain A central feature of self-manage- been asked that question, Ricky’s in- information about diet, exercise, and ment education is the patient- stinct was to say, “Weight too high, cho- medications and learn the technical skill generated short-term action plan.14 An lesterol too high, sugar too high, and of blood glucose monitoring. Analo- action plan is similar to a New Year’s blood pressure too high.” Instead, he gous to traditional care, health care pro- resolution, but of shorter duration, such began to describe the trouble he had last fessionals decide what information and as1or2weeks.Itisalsomorespe- night preventing his son from throw- skills to teach. cific; for example, “This week I will ing his dinner on the floor and the daily Self-management education is differ- walk around the block before lunch on battles he faced caring for him. It be- ent (TABLE 2). Whereas traditional pa- Monday, Tuesday, and Thursday.” The came clear that Dr Fine’s perception of tient education offers information and action plan should be realistic, propos- Ricky’s main problem was quite differ- technical skills, self-management edu- ing behavior that patients are confi- ent from Ricky’s perception. cation teaches problem-solving skills. dent they can accomplish. Confidence Allowing patients to define their While traditional patient education de- can be measured by asking, “On a scale problems can be eye-opening. When fines the problems, self-management of 0 to 10, how sure are you that you asked “what is your main problem,” a education allows patients to identify can walk around the block before lunch chronically ill patient of one of the au- their problems and provides tech- on Monday, Tuesday, and Thursday?” thors answered: “Caring for my spouse niques to help patients make deci- Experience shows that if the answer with severe Alzheimer’s dementia.” An- sions, take appropriate actions, and al- is 7 or higher, the action plan is likely other said: “My husband died 6 months ter these actions as they encounter to be accomplished. If the answer is ago and I am terribly lonely.” In these changes in circumstances or disease.12 below 7, the action plan should be cases, as in Ricky’s situation, physi- Self-management education comple- made more realistic in order to avoid cians defining the problem as poor ad- ments, rather than substitutes for, tra- failure (K.L.). herence with a medical regimen are ditional patient education. An important concept in self- missing the boat. Corbin and Strauss13 delineate 3 sets management is self-efficacy, the confi- Principally trained in the acute care of tasks faced by people with chronic dence that one can carry out a behav- of hospitalized patients, physicians may conditions: (1) medical management of ior necessary to reach a desired goal.15 have inappropriate expectations of the the condition such as taking medica- In self-management training, patients degree to which patients with chronic tion, changing diet, or self-monitor- may be asked to estimate their confi- disease can change behavior. Patients with a foot fracture must wear an im- mobilization device and avoid certain Table 2. Comparison of Traditional Patient Education and Self-management Education activities for several weeks. In contrast, Traditional Patient Education Self-management Education What is taught? Information and technical skills Skills on how to act on problems patients with diabetes or hyperlipid- about the disease emia must change their behavior for the How are problems Problems reflect inadequate The patient identifies problems rest of their lives. Ideally, patients— formulated? control of the disease he/she experiences that may through education about their disease— or may not be related to the disease come to agree with their physician’s de- Relation of education to the Education is disease-specific and Education provides lineation of the problem as unhealthy disease teaches information and problem-solving skills that are behaviors, and collaborative care can cre- technical skills related to the relevant to the consequences disease of chronic conditions in ate a true partnership in setting goals re- general garding those behaviors. What is the theory underlying Disease-specific knowledge Greater patient confidence in Collaborative care does not yet ap- the education? creates behavior change, his/her capacity to make which in turn produces better life-improving changes pear to be the dominant approach in clinical outcomes (self-efficacy) yields better primary care practice. One study found clinical outcomes that participatory decision making, an What is the goal? Compliance with the behavior Increased self-efficacy to improve changes taught to the patient clinical outcomes important component of collaborative to improve clinical outcomes care, occurred in only one quarter of Who is the educator? A health professional A health professional, peer all visits to primary care physicians11 al- leader, or other patients, though visits involving chronic ill- often in group settings

prove health outcomes in adults with Table 3. Self-management Education and Adult Asthma Outcomes asthma.24 No. of Studies No. of Studies With Intervention Group With No Significant Of the 23 studies measuring clinical Improved More Than Control Group Difference Between Groups outcomes (TABLE 3), 11 demon- With action plans 7 4 strated improvement in asthma symp- Without action plans 4 8 toms; only 1 study found improve- Total 11 12 ment in measured lung function. Studies with self-management action dence—on the 0 to 10 scale—that they professionals who must use their ex- plans had a greater tendency to im- can achieve their action plan. Self- pertise to inform, activate, and assist pa- prove outcomes than those without ac- efficacy theory holds that the success- tients in the self-management of their tion plans. Self-management interven- ful achievement of the action plan is condition.5 Patients and professionals tions involving mild to moderate more important than the plan itself. If each bring expertise to the table and asthmatic patients demonstrated a a physician tells a patient to walk 1 mile problems identified by patients re- smaller effect than those involving pa- each day and the patient fails to do so, ceive priority on the agenda. tients with severe asthma. In a study in little is accomplished except a sense of Clinical Separability. While collabo- which patients took part in a self- failure. If a physician and patient col- rative care and self-management edu- management intervention for 1 year and laboratively agree that exercise is de- cation are 2 expressions of the same were followed up for 5 years total, im- sirable and the short-term action plan partnership paradigm, they require dis- provements at 1 year were only par- succeeds, the patient may later pro- tinct clinical processes. Collaborative tially maintained at 5 years.20 pose a revised action plan to walk care permeates and alters the essence Diabetes. To evaluate self-manage- more—eventually, perhaps, achieving of the patient-physician interaction. Im- ment education in diabetes, we con- a daily mile. Similarly when helping a buing all primary care with the collabo- sulted a review of 72 studies on “self- patient adhere to a lipid-lowering diet, rative model is a major challenge. management training” in type 2 it may be more effective to decide col- Providing self-management educa- diabetes, authored by Centers for Dis- laboratively on an action plan to limit tion is less daunting. Self-manage- ease Control and Prevention (CDC) cheese consumption to twice a week ment skills can be successfully taught investigators.25 The CDC diabetes rather than telling a patient to stop eat- in a 6-session course16; the role of pri- review is not an analysis of self- ing cheese altogether. mary care physicians is to understand management, but rather of patient Action plans are developed by pa- and support the self-management edu- education. Few studies contain inter- tients as something they want to do. cation process. ventions in which patients learn prob- They are not provided by health care lem-solving skills and create action professionals or chosen from a list of Does Self-Management Education plans; most involve the teaching of dia- options. The purpose of action plans is Improve Outcomes? betes information and technical skills. to give patients confidence in manag- Asthma. To identify studies of adult The term self-management in most ing their disease, confidence that fuels asthma self-management, we con- diabetes literature differs from self- internal motivation. sulted the Cochrane review “Self- management education described ear- To summarize, 2 essential elements management education and regular lier in this article, generally referring to define self-management education: (1) practitioner review for adults with patient mastery of technical skills such patients learn problem-solving skills, asthma,”17 and a separate review by van as home glucose monitoring. useful at identifying problems from der Palen et al.18 We also searched for Of 46 studies measuring the effect of their own point of view and using ac- controlled trials in the MEDLINE da- patient education on patient knowl- tion plans to find solutions; and (2) tabase under the heading asthma in edge and performance of technical these skills are applied to 3 aspects of combination with the topics self- skills, the CDC review found 33 stud- chronic illness: medical, social, and management, self-care, and self- ies to show a positive impact and 13 to emotional. efficacy. Eliminating studies that had no be negative (TABLE 4). In contrast, only reasonable control groups and those 18 of 54 studies demonstrated that pa- How Collaborative Care and whose intervention consisted only of tient education interventions, com- Self-management Education traditional patient education, we ar- pared with control groups, improve Are Related rived at 27 studies, of which 12 mea- glycemic control. Collaborative educa- Conceptual Unity. In both collabora- sured clinical outcomes, 11 evaluated tion,which in some cases approaches tive care and self-management educa- outcomes and health care costs, and 4 self-management education, pro- tion, the emphasis shifts toward pa- measured costs alone.17-23 A previous duced more favorable results than di- tients as principal caregivers, yet a great Cochrane review concluded that pa- dactic education. Patient education led responsibility remains with health care tient education alone does not im- to a reduction in cardiovascular risk

2472 JAMA, November 20, 2002—Vol 288, No. 19 (Reprinted) ©2002 American Medical Association. All rights reserved. INNOVATIONS IN PRIMARY CARE measures (elevated weight, choles- Table 4. Diabetes Education terol levels, and blood pressure) in only No. of Studies With No. of Studies With 18 of 45 studies. The CDC review in- Intervention Group Improved No Significant Difference dicates that patient education by itself More Than Control Group Between Groups is not sufficient to improve clinical Patient knowledge and self-care skills 33 13 outcomes, and that greater patient Glycemic control 18 36 knowledge does not correlate with im- Improved cardiovascular risk factors 18 27 proved glycemic control. This conclu- sion mirrors that of the Cochrane management program without an ac- classes teaching problem-solving skills asthma review on patient education tion plan.41-48 Of the 18 studies, 12 re- using action plans. Six months after at- alone, which found no substantial evi- corded improved clinical outcomes in tending the Chronic Disease Self- dence of improved outcomes.24 the intervention group compared with Management Program course, partici- Two other reviews, categorizing the controls. Of the 10 studies in group 1, pants improved control of their varieties of diabetes education, cor- all demonstrated improved clinical out- symptoms and demonstrated a reduc- roborate that self-management educa- comes in the intervention group; in con- tion in limitation of activity compared tion, as described above, is not a com- trast, only 2 of the 8 studies in group 2 with controls.49 After 2 years, course mon feature of diabetes education.26,27 found improved clinical outcomes in the participants maintained improved A few investigators have studied dia- intervention group. These findings sug- scores on scales measuring self- betes education with a focus on goal set- gest that true self-management educa- efficacy and health distress.50 In a sepa- ting and problem solving,28,29 and the tion can improve clinical outcomes for rate study, a 1-year self-management American Association of Diabetes Edu- patients with arthritis. program (the Health Enhancement cators has suggested a research agenda The arthritis self-management pro- Project) for chronically ill frail elderly to examine which specific educational gram most widely cited in the arthritis patients, using collaborative care and interventions have the greatest impact literature, developed at Stanford Uni- the Chronic Disease Self-Management on diabetes outcomes.30 At this time, no versity and disseminated by the Arthri- Program course, was associated with firm conclusions can be reached about tis Foundation, is the Arthritis Self- higher levels of physical activity and the impact of self-management educa- Management Program (ASMP), also overall health status for the intervention on clinical outcomes in diabetes. known as the Arthritis Self-Help Pro- tion group compared with controls.51 Arthritis. To review studies of ar- gram or Challenging Arthritis.38 Of the thritis self-management, we searched 10 studies in group 1, 8 used interven- Does Self-management MEDLINE from 1993 to 2001 for con- tions based on the ASMP. Education Reduce Costs? trolled clinical trials under the com- In studies of the ASMP, arthritis Of the 15 studies measuring the im- bined headings of arthritis and self- patients attending a 6-session self- pact of adult asthma self-management management, self-efficacy,orself-care. management class were compared with education on health care utilization and Some studies examined osteoarthritis a usual-care control group. The class of- costs, 8 found reduced hospital or emer- or rheumatoid arthritis or both, and 1 fered problem-solving skills, action gency department use while 7 failed to article looked at ankylosing spondyli- plans, and efforts to improve self- demonstrate cost savings. Six of the 8 tis. Articles were included if they were efficacy. Four years after patients par- studies showing reduced costs in- controlled trials involving patient edu- ticipated in the course, they reported cluded a self-management action plan; cation or self-management education, a mean reduction in pain symptoms of 3 of the 7 negative studies involved an which measured clinical outcomes such 20%; a comparison group did not dem- action plan. as pain, physical disability, or overall onstrate this improvement. Improve- Insufficient data are available to judge health status. Articles solely studying ment was associated with growth of whether self-management education for exercise programs and those re- self-efficacy by improving patient con- patients with diabetes can reduce health stricted to such intermediate out- fidence in being able to cope with the care costs. Of the 10 studies offering ar- comes as patient knowledge, coping, chronic condition.38 thritis self-management education, 3 self-efficacy, or use of medications were Chronic Illness in General. Con- noted fewer physician visits32,33,38 (re- excluded. sulting the MEDLINE database, we duced by 40% in 1 study38) and lower The 18 studies identified were di- were able to find only 2 randomized health care costs; the other 7 did not vided into 2 groups: group 1 contained controlled trials that examine the im- measure resource utilization or costs. studies in which patients were offered pact of self-management education on For chronic disease overall, patients true self-management education includ- patients with a mixture of chronic con- attending the 7-week Chronic Disease ing an action plan,31-40 whereas studies ditions. In 1 study, derived from the Self-Management Program had fewer in group 2 offered information-only ASMP, patients with a variety of chronic hospitalizations over a 6-month patient education or a weak self- conditions met together in 7 weekly period than controls, resulting in a

6-month net savings of $750 per pa- dence-based standards for the entire 3. Medicare, Medicaid, and most tient.49 While the reduction in hospi- population. Third, the precise condi- private health insurance companies tal days was not maintained at 2 years tions essential for success in self- fail to reimburse self-management following course attendance, a lower management education remain to be de- education. rate of physician and emergency determined. Efforts are under way to make self- partment visits continued at the 2-year management courses available in the mark.50 The Health Enhancement Incorporating Self-management United States and abroad. The Michi- Project was associated with fewer hos- Education Into Primary gan Diabetes Research and Training pital days and reduced costs for the in- Care Practice Center has trained more than 1000 edu- tervention group compared with con- When Dr Fine returned, she encour- cators to use a self-management cur- trols.51 aged Ricky to think of some short- riculum when teaching patients with term action plans to better cope with diabetes.54 In England, the National Summary of Self-management the care of Ricky’s son, including the Health Service has proposed the Ex- Impact on Outcomes and Costs enlistment of more community and pert Patient Initiative to provide pri- Because interventions are not standard- school support services. Eventually, mary care practices with arrange- ized across clinical trials, it is difficult Ricky said that he wanted to eliminate ments for self-management programs.55 to generalize about the impact of self- 1 item of junk food each week. This de- One of us (K.L.), along with col- management education on clinical out- cision marked a first step toward a self- leagues at Stanford University, has comes and costs. A few conclusions, motivated attempt to confront his coro- taught several hundred master train- however, can be reached. nary heart disease risk. ers who in turn train peer leaders for 1. Patient education programs teach- Collaborative care and self- classes offering the ASMP and Chronic ing self-management skills are more ef- management education are aspects of Disease Self-Management Program.56 fective than information-only patient the patient-physician partnership para- Ultimately, self-management educa- education in improving clinical out- digm. Primary care physicians could be- tion and the patient-physician partner- comes. gin to incorporate collaborative care and ship will become widely adopted only 2. In certain circumstances, self- self-management elements into their if schools that train health care profes- management education is effective in practice, beginning with such initial sionals, provider organizations, and improving outcomes, and possibly in steps as asking patients to articulate third-party payers create favorable con- reducing costs, for arthritis and prob- their view of the problems they face and ditions for such a transformation. ably for adult asthma. assisting patients to generate simple Funding/Support: Portions of this work were funded 3. In initial studies, the Chronic Dis- and achievable action plans. More- by grant 038253 from the Robert Wood Johnson Foun- ease Self-Management Program can im- over, primary care physicians could dation. prove outcomes and reduce costs for learn about local resources for self- groups of patients with a variety of management education and could ad- REFERENCES chronic conditions. vocate for health care providers and 1. 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