Chapter 5
Patient Self-Management Support

DEFINITION AND OVERARCHING THEMES

The overall goal of the cross-cutting session on patient self-management support was to identify strategies that can be used by communities to help patients manage their condition(s) while leading active and productive lives. The focus was on evidence-based self-management programs that include goal setting, problem solving, symptom management, and shared decision making and are applicable for a diverse population, including those with limited health literacy. To establish a common frame of reference, the participants generally accepted the following definitions (IOM, 2003):

Self-management support is defined as the systematic provision of education and supportive interventions by health care staff to increase patients’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support. Self-management is defined as the tasks that individuals must undertake to live well with one or more chronic conditions. These tasks include having the confidence to deal with medical management, role management, and emotional management of their conditions.

From the outset, the session participants drew a clear distinction among patient education, support for self-management, and self-management itself. Patient education refers to traditional, largely didactic instruction given to patients, focused mainly on information and technical skills. An example is a diabetes educator lecturing to a group of diabetics and then teaching them how to self-inject insulin or monitor glucose levels. Self-management support consists of the means by which individual



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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities Chapter 5 Patient Self-Management Support DEFINITION AND OVERARCHING THEMES The overall goal of the cross-cutting session on patient self-management support was to identify strategies that can be used by communities to help patients manage their condition(s) while leading active and productive lives. The focus was on evidence-based self-management programs that include goal setting, problem solving, symptom management, and shared decision making and are applicable for a diverse population, including those with limited health literacy. To establish a common frame of reference, the participants generally accepted the following definitions (IOM, 2003): Self-management support is defined as the systematic provision of education and supportive interventions by health care staff to increase patients’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support. Self-management is defined as the tasks that individuals must undertake to live well with one or more chronic conditions. These tasks include having the confidence to deal with medical management, role management, and emotional management of their conditions. From the outset, the session participants drew a clear distinction among patient education, support for self-management, and self-management itself. Patient education refers to traditional, largely didactic instruction given to patients, focused mainly on information and technical skills. An example is a diabetes educator lecturing to a group of diabetics and then teaching them how to self-inject insulin or monitor glucose levels. Self-management support consists of the means by which individual

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities practitioners and the broader health care system support patients in the methodical exercise of self-management (Bodenheimer et al., 2002). Self-management encompasses problem-solving skills and patients’ collaborative involvement in establishing goals to manage their disease. KEY STRATEGIES Participants proposed five key strategies for catalyzing the diffusion of self-management and self-management support: (1) identify and disseminate evidence-based self-management practices; (2) recognize the centrality of self-management to good patient care, and incorporate this recognition into the health care culture (including at the national level); (3) provide incentives for the appropriate use of self-management support integrated into the delivery of health care; (4) develop self-management programs and tools that are applicable to diverse populations; and (5) make better use of all members of the health care team. Identify and Disseminate Evidence-Based Self-Management Practices Participants proposed that existing and future best self-management practices be consolidated and disseminated to providers, patients, and their families, perhaps through a centralized clearinghouse. The problem today is that those wishing to implement best self-management practices often cannot find information about them, or distinguish those that are evidence-based from those that are not. Session participants also supported the need for expansion of the existing evidence base on effective self-management practices. There was a call for responsive research that is practical and relatively rapid-cycle so as to provide a sufficient foundation for moving forward. Participants suggested learning from practical models and, on a parallel track, developing a firmer scientific base. It was emphasized that the scope of this research should extend to all levels of the health care system, from working one-on-one with patients in the practice of self-management, to changing office environments, to revamping entire systems of care. Additionally, best practices must be appropriately tailored for different populations and age groups, particularly children and adolescents. Two communities represented at the summit—Controlling Asthma in the Richmond Metropolitan Area (CARMA) and the Oregon Heart Failure Project (OHFP)—shared with session participants some of their accomplishments in self-management support and lessons learned in working with patients and their families to assist them in self-managing asthma and heart failure, respectively. Both rely on evidence-based guidelines as the foundation for their programs (see Boxes 5-1 and 5-2).

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities Box 5-1. Controlling Asthma in the Richmond Metropolitan Area The Controlling Asthma in the Richmond Metropolitan Area (CARMA) project began in 2001 with the aim of improving asthma management for children from birth through age 18, with particular focus on disadvantaged children with severe, poorly controlled asthma. The goals of the project are to improve the quality of life for children and parents and to decrease emergency room visits and hospitalizations. Funding is provided by the Centers for Disease Control and Prevention as part of a larger agency program, Controlling Asthma in American Cities. CARMA focuses the efforts of members of a community coalition on offering self-management support to children, their families, teachers, and others so they can better manage asthma and the factors that affect it—such as the environment, diet/ nutrition, and physical activity—according to evidence-based guidelines. Collaborative relationships with a variety of service providers, including hospitals, managed care organizations, primary care providers, nursing and case management organizations, pharmacies, schools, preschools (including the Head Start programs), and the American Lung Association, are the foundation for programs incorporating national guidelines developed by the Asthma and Allergy Foundation of America. School programs are based on the You Can Control Asthma and Power Breathing curricula, tailored to accommodate the psychosocial needs of the target population. Since its inception, CARMA has provided preschool and elementary school programs that have successfully impacted more than 500 children. A newly released manual, Guidelines for Managing Asthma in Virginia Schools: A Team Approach, produced by the Virginia Department of Health, Virginia Department of Education, and Virginia Asthma Coalition, offers further support for these programs. PACE (Professional Acknowledgment for Continuing Education) training and academic detailing provide continuing education for primary care providers serving the community. Two managed care organizations collaborate with CARMA to evaluate the effectiveness of intensive case management for Medicaid enrollees with severe asthma. Note: Additional information about the project can be found at the CARMA website (CARMA, 2004).

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities Box 5-2. The Oregon Heart Failure Project Initiated in 2001, the Oregon Heart Failure Project (OHFP) is a statewide study aimed at addressing the persistently high mortality rates among patients who have experienced heart failure and the shortage of cardiologists in certain localities. The project focuses on evidence-based interventions in the ambulatory setting and patient self-management that will improve health outcomes. OHFP developed out of a partnership between the American College of Cardiology Foundation’s (ACCF) Guidelines Applied in Practice (GAP) project and the Oregon Medicare Quality Improvement Organization, with the idea of using Oregon as a testing ground. The project relies on several key features: (1) the implementation of clinical guidelines for heart failure developed by ACCF and the American Heart Association; (2) a heart failure registry for use by physicians to monitor progress; and (3) a toolkit of standardized materials including a clinic visit form, a clinician guide, a patient overview, patient instruction and medication instruction sheets, a patient diary, and information about the patient registry. More extensive materials are also available to physicians to support their participation in OHFP, including a patient-driven action plan, methods for measuring and evaluating outcomes, and guidelines for improving the process of care from a systems perspective. The self-management support “tip sheet” below was developed for physicians and nurse practitioners. Increasing Your Patient’s Success with Self-Care for Heart Failure Use these questions and tips as a guide for creating a self-care plan with a patient. Listen to your patient Find out what your patient believes about living with heart failure. Sample questions: What does the diagnosis of heart failure mean to you? What bothers you most about living with heart failure? Do you believe that taking medications and taking care of yourself can improve the quality and length of your life? How confident are you that you can maintain a program of modifying your diet, getting exercise, and recording your daily weight? What interferes with your ability to make changes and stick to them? Does the cost of your medications get in the way of taking them regularly? Do you have family, friends, or a community organization available if you need help? Have you had any bad experiences with medications or treatments that make you reluctant to try new medications or strategies?

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities What are your goals (e.g., “celebrate my 50th wedding anniversary” or “play golf with friends”)? Do you think treatment can help you reach your goal? Help the patient set realistic self-care goals Make the recommended treatment plan clear, concrete, simple, and understandable. Focus recommendations on behavior changes such as exercising every day, rather than numerical outcomes such as losing 10 pounds in a month. Guide the patient to focus on one or two small, realistic changes that he or she can begin immediately. Encourage the patient to create a goal that involves positive action (e.g., use lemon juice instead of salt for seasoning). At the end of the visit, ask each patient to describe the actions he or she will begin immediately and why the actions are important. Note: Information about OHFP and ACCF GAP can be found at the respective websites (American College of Cardiology, 2004a; American College of Cardiology, 2004b; OMPRO, 2004). Recognize the Centrality of Self-Management to Good Patient Care, and Incorporate This Recognition into the Health Care Culture Participants suggested that implementing this strategy will require a fundamental shift from the perception of self-management as an “add-on” to care to its becoming an expected and systematic part of patient care. Accomplishing this shift will in turn require transforming physician/provider culture, diffusing these values up to the national level. The asthma group specifically called for changing the culture and finance of health care, and for encouraging health care providers, patients, and communities to embrace self-management as the central aim of good asthma care. It was generally agreed that the reactive, visit-based design of the current health care system—rather than simply clinician attitudes—is the major barrier to the widespread adoption of self-management principles. For example, the standard 10- to 15-minute office visit is not conducive to patient-centered care or to more labor-intensive interactions, such as collaborative goal setting and problem solving/ action planning. Furthermore, payment mechanisms are not designed to reward these types of exchanges or follow-up support for self-management. In addition to supply-side issues that impact the uptake of self-management by clinicians, demand-side issues related to patient and family expectations should also be considered. Establishing a consumer culture and creating demand for evidence-based self-management services were suggested by both the asthma and

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities diabetes working groups, including social marketing techniques to activate patients in seeking self-management programs and following self-management suggestions. Jack Ebeler, President and CEO of the Alliance of Community Health Plans, shared with summit participants information about a collaborative formed among health plans that are developing system supports to promote patient engagement and self-management. The alliance’s Advancing Better Care Project is described in Box 5-3. Box 5-3. Advancing Better Care Project The Advancing Better Care project is a collaborative effort by member organizations of the Alliance of Community Health Plans in the broad area of patient engagement and activation. The project responds to the priority area of self-management/health literacy identified by the IOM (2003), as participating organizations will be developing and improving tools and system supports that make self-management, self-care, and shared decision making tenable. Currently, nine health plans are participating in the collaborative, with a range of projects under way. The following are two of the projects focused on collaborative goal setting and self-management: Kaiser Permanente (Oakland, California) is pursuing an initiative to develop and improve its members’ self-care skills by facilitating shared medical decision making among members and providers. A major focus is self-management of chronic disease. The initiative encompasses five overarching strategies: (1) embedding self-management support into population management, (2) promoting self-management support in the clinical encounter, (3) strengthening medication adherence, (4) turning didactic patient education into self-management education, and (5) offering alternatives to classroom-based self-management education. Group Health Cooperative (Seattle, Washington) is pursuing an initiative to improve its members’ health through a patient on-line health record feature on its member website—MyGroupHealth. The patient on-line health record is a privacy- and security-protected view into patients’ individual health records, housed in Group Health’s clinical information system. MyGroupHealth allows patients to refill and renew prescriptions, make and view appointments, view laboratory and other test results, and email their health care providers via the Internet. Through the use of this system, patient and physician now write the formerly physician-centric health record together. Note: Additional information on other projects in the Advancing Better Care collaborative can be found at the project’s website (Alliance of Community Health Plans, 2004).

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities Provide Incentives for the Appropriate Use of Self-Management Support Integrated into the Delivery of Health Care Participants suggested that the assimilation of self-management practices will continue to be delayed unless these practices are fully integrated into the core components of health care delivery. Historically, interventions that promote self-management have not been reimbursed, partly because of the lack of a strong business case for short-term return on investment (see Chapter 6). Additionally, it is difficult to imagine progress in self-management support without parallel progress in care coordination, as discussed in Chapter 4, particularly with regard to the importance of interdisciplinary teams and a system that reimburses the bundling of harmonized services. Although evidence is mounting that chronic disease self-management programs are effective in changing health behaviors, improving health status, and decreasing health service utilization, participants emphasized that research in this area must continue to expand and be steadily infused into the mainstream payment structure of both public and private purchasers of health care (Gibson et al., 2000; Lorig et al., 1999, 2001; Norris et al., 2001). Develop Self-Management Programs and Tools Applicable to Diverse Populations Rather than a one-size-fits-all approach, this strategy involves developing self-management support and self-management programs that are appropriate in terms of culture, language, age, literacy, and community. Developing such a program involves more than translation and/or simplification; rather, the program and associated supports must be flexible enough to be individualized around patient preferences, including age, gender, and lifestyle. There was considerable discussion on the topic of health literacy, focused not only on reading comprehension, but more important on the ability to assimilate and process medical information (IOM, 2004). It was suggested that, while traditional self-management programs have been delivered on a one-to-one or small-group basis, newer technologies, such as computers and automated telephone messaging systems, might be used in the future (Piette et al., 2000; Schillinger et al., 2002). Completing a patient-generated “action plan” is a key feature of a self-management program. This tool assists in developing short-term goals (1–2 weeks) to help patients initiate changes and achieve success in managing their condition effectively. The key to good action planning is for the actions to be undertaken to be generated by the patient, not the provider. First, the patient indicates what he or she would like to do and what is achievable given the family and social environment. Then collaboratively with the provider, the patient refines the action plan to make it behaviorally specific. Finally, the provider asks how certain the patient is that he or she will complete the plan on a scale of 0 (being totally uncertain) to 10 (being totally certain). If the patient gives an answer of 7 or above, self-efficacy theory predicts that the plan will be accomplished, and no further work is needed. If the answer is below 7, the patient is asked what the problems might be, and problem solving ensues. Box 5-4 presents a case scenario for developing a self-management action plan with a patient. Make Better Use of All Members of the Health Care Team All members of the health care team should understand and carry out their roles in offering self-management support or directly providing interventions (Glasgow and Eakin, 2000; Glasgow et al., 2003). For example: The receptionist might mail out and collect self-management assessments or refer all chronic disease patients to classes. A team of health professionals might prepare a series of customized handouts at different reading levels on a variety of self-management issues, which would be stored

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities Box 5-4. Case Scenario for Developing a Self-Management Action Plan Provider: We have discussed several things you might want to do to help with your high blood pressure. What do you think would be realistic for you to do in the next week or two? Patient: Maybe I could exercise. Provider: That would be great. Exactly what will you do and how often? Patient: I guess I will walk for 15 minutes. Provider: Generally, we like to see people exercising 3 to 5 days a week. How many days each week will you walk 15 minutes? Patient: I can do this at least 4 days. Provider: Great! Can you tell me when in the day you will do this? Patient: I can do it before I eat lunch on my lunch hour. Provider: Sounds like you have a plan. How certain are you that you will walk for 15 minutes 4 days a week during your lunch hour, with 10 being totally certain and 0 being totally uncertain. Patient: Well, now that I think about, it 5 or 6. Provider: What do you think will be the problem? Patient: It is sometimes really hot at noon, and I don’t like going outside. Provider: Boy, I understand that—can you think of some alternatives? Patient: Yeah, on days that are hot, I will walk after dinner. Provider: Now how sure are you—remember 0 to 10. Patient: Oh, now I am an 8. Provider: Terrific—I will be really interested in how you are getting on. SOURCE: Lorig (1999). Copyright 2004 by Stanford University. in the computer and printed out by any staff member as the need might arise. The physician might see some patients in group visits, offering a combination of self-management support and clinical care. The nurse or social worker might provide information on self-management programs or action planning and follow-up support after the patient has met with the provider. Similar to the emphasis in the care coordination session on learning how to interact cooperatively on multidisciplinary teams (see Chapter 4), the importance of teaching self-management principles in both the academic and clinical settings was stressed during this session. Health care workers should not only have specific training in clearly defined competencies appropriate to their profession, but also practice and train together as a team with specified roles and performance

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities expectations. However, physicians and most other health professionals do not routinely receive formal training in self-management techniques during their professional education. As a result, they usually are unfamiliar with the attributes of these interventions and tend to be ill equipped to provide them. Self-management support is well established as a fundamental component of nursing education, which can serve as a resource for moving forward in this area. A case in point is a recent a study funded by the National Institute of Nursing Research that presents a model of care addressing self-management support for the elderly with heart failure. This model provides chronically ill patients and their families with the knowledge and care management skills to help avoid declines in health and offset future hospitalizations (Naylor et al., 2004). It is important to view self-management support in tandem with family-management support, being cognizant of the contributions of caregivers. For example, referrals might be provided to websites offering helpful tips on bathing, incontinence, behavior problems, and preparing for the future. Finally, health care professionals would benefit from collaborating with consumer groups, which have played a major role in patient advocacy and support. CLOSING STATEMENT In summary, self-management and self-management support are increasingly being recognized as part of evidenced-based best practices in health care. This is especially true for people with chronic disease, with self-management being recognized as central in the Chronic Care Model (Glasgow et al., 2002). However, the present health care system is ill prepared to integrate self-management into mainstream patient care. Changes are needed at many levels, from financing for self-management support/interventions to training of health care professionals. While all these changes are not within the purview of any one person or organization, such changes can take place. The participants in this session expressed their strong belief that self-management and self-management support are not only desirable but necessary to bridge the quality chasm. REFERENCES Alliance of Community Health Plans. 2004. Alliance of Community Health Plans. [Online]. Available: http://www.achp.org [accessed April 30, 2004]. American College of Cardiology. 2004a. Guidelines Applied in Practice (GAP) Program. [Online]. Available: http://www.acc.org/gap/gap.htm [accessed April 28, 2004]. American College of Cardiology. 2004b. American College of Cardiology, Oregon Chapter. [Online]. Available: http://www.oregoncardiology.org/default.html [accessed April 30, 2004]. Bodenheimer T, Lorig KR, Holman H, Grumbach K. 2002. Patient self-management of chronic disease in primary care. The Journal of the American Medical Association 288(19):2469–2475. CARMA (Controlling Asthma in the Richmond Metropolitan Area). CARMA—Controlling Asthma in the Richmond Metropolitan Area. [Online]. Available: http://www.carmakids.org [accessed April 30, 2004]. Gibson PG, Coughlan J,Wilson AJ, Abramson M, Bauman A, Hensley MJ, Walters EH. 2004. Self-management education and regular practitioner review for adults with asthma. The Cochrane Library (3): Glasgow RE, Davis CL, Funnell MM, Beck A. 2003. Implementing practical interventions to support chronic illness self-management. Joint Commission Journal on Quality and Safety 29 (11):563–574. Glasgow RE, Eakin EG. 2000. Medical office-based interventions. In: Snoek F, Skinner C, eds. Psychology in Diabetes Care 6:141–168.

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The Ist Annual Crossing the Quality Chasm Summit: A Focus on Communities Glasgow RE, Funnell MM, Bonomi AE, Davis C, Beckham V, Wagner EH. 2002. Self-management aspects of the improving chronic illness care breakthrough series: Implementation with diabetes and heart failure teams. Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine 24(2):80–87. IOM (Institute of Medicine). 2003. Priority Areas for National Action: Transforming Health Care Quality. Adams K, Corrigan JM, eds. Washington, DC: National Academy Press. IOM. 2004. Health Literacy: A Prescription to End Confusion. Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. Washington, DC: National Academy Press. Lorig KR. 1999. The Chronic Disease Self-Management Workshop Leaders Manual. Stanford, CA: Stanford University. Lorig KR, Ritter P, Stewart AL, Sobel DS, Brown BW Jr, Bandura A, Gonzalez VM, Laurent DD, Holman HR. 2001. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical Care 39(11):1217–1223. Lorig KR, Sobel DS, Stewart AL, Brown BW Jr, Bandura A, Ritter P, Gonzalez VM, Laurent DD, Holman HR. 1999a. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial. Medical Care 37(1):5–14. Naylor MD, Brooten DA, Campbell RL, Maislin G, McCauley KM, Schwartz JS. 2004. Transitional care of older adults hospitalized with heart failure: A randomized, controlled trial. Journal of the American Geriatrics Society 52(5):675–684. Norris SL, Engelgau MM, Narayan KM. 2001. Effectiveness of self-management training in type 2 diabetes: A systematic review of randomized controlled trials. Diabetes Care 24 (3):561–587. OMPRO. 2004. Welcome to OMPRO, a Healthcare Quality Resource. [Online]. Available: http://www.ompro.org/about_ompro/about_index.htm [accessed March 18, 2004]. Piette JD, Weinberger M, McPhee SJ. 2000. The effect of automated calls with telephone nurse follow-up on patient-centered outcomes of diabetes care: A randomized, controlled trial. Medical Care 38(2):218–230. Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GD, Bindman AB. 2002. Association of health literacy with diabetes outcomes. The Journal of the American Medical Association 288(4):475–482.