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Diabetes is a chronic disease that incurs significant health, disability, and financial cost in the United States. Diabetes has become increasingly prevalent with rising morbidity and mortality. It is estimated that approximately 7% of the US population has diabetes. In 2005, 1.5 million people over the age of 20 were diagnosed with diabetes. An additional 41 million have prediabetes. Diabetes stands as a leading cause for end-stage renal disease, blindness, and amputations in the US.1 In 2002, the estimated total financial cost (direct and indirect) of diabetes in the US was $132 billion per year.2 The average annual health care expenditures per person with diabetes are $13,243 compared with $2,560 for a person without diabetes.3 Diabetes also adversely affects patient quality of life4 and depression is twice as frequent in those with diabetes.5 Much of the excess costs associated with diabetes are related to the care for the preventable complications of diabetes. Intensive treatment of diabetes along with improved self-management can substantially reduce the risk of developing these complications. Despite evidence from well-designed clinical trials detailing interventions that can markedly reduce morbidity and mortality, 6-9 the majority of patients in the US do not reach these goals.
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more frequent dosing.14 There were a number of reasons cited in these studies for lower adherence rates, including patients' inadequate understanding of the regimen, medication side effects, lack of perceived regimen benefits, medication costs, and regimen complexity. Although diabetes self-management is fundamental to controlling diabetes, it can be demanding, complex, and difficult to sustain, and requires ongoing support and education.
DSME is necessary but not sufficient to ensure program survival. In a qualitative review by Norris and colleagues,26 individual versus group approaches to DSME were examined. This review found that patients in both settings demonstrated equal success in acquiring and honing self-care practices. The only self-management area in which group-based learning led to slightly better self-management outcomes than individual-based learning was nutritional management and physical activity. Norris and colleagues concluded that each intervention approach offered unique features and benefits. In another review paper one year later, Norris found no differential impact between individual versus group-based interventions in improving glycemic control.18 Although not conclusive, there are some data to support that group-based DSME can be more costeffective, lead to greater treatment satisfaction, and be slightly more responsive to lifestyle behavioral changes such as diet and physical activity. While research to date has not found group formats to be unequivocally superior to individual or vice versa, group-based interventions have been found to be clearly more effective than usual care or control conditions. Deakin and colleagues27 conducted a systematic review of randomized controlled trials in which group-based DSME interventions were compared to usual care/waiting list control/no intervention groups. Health endpoints for group-based DSME programs included improvement in self-management skills, selfefficacy or empowerment, metabolic control, patient satisfaction, and quality of life. Based on the eligibility criteria, meta-analyses of the 11 studies demonstrated the efficacy of group DSME program in improving A1c in the short term (4 to 6 months), intermediate term (12 to 14 months), and long term (2 years) (P <0.00001). Also found were significant improvements in fasting blood glucose at 12 months, decreased weight at 12 to 14 months, greater diabetes knowledge at 12 to 14 months, and lower systolic blood pressure at 4 to 6 months (range of P values; P <0.00001 to P <0.03). Finally patients in group-based interventions (versus usual care controls) were found to have a reduced need for diabetes medication (P <0.00001) than their control counterparts. Overall, this review found groupbased training to be definitely more effective than usual care control groups.27 In summary, numerous studies and meta-analyses have established that DSME programs, using a variety of designs and strategies, delivered in diverse settings, using group and/or individual formats, and targeting specific patient groups, have been consistently successful in producing improved metabolic, self-management, and psychosocial outcomes. The answer to the question of whether DSME is effective is a resounding yes. Future DSME research will need to focus on questions related to cost effectiveness, long-term sustainability of gains made in DSME programs, and the relative merits of different theoretical approaches to DSME.
developed and proposed as viable alternatives to our current acute approach to diabetes care and education.32-34 These collaborative approaches differ from the traditional acute care approach in that they emphasize DSME and counseling that is focused on the following: addressing psychosocial issues, promoting interactive communication between professionals and patients, assisting patients in becoming effective problem solvers, reducing barriers to self-management, supporting patients' role as the primary selfmanagement decision maker, and providing support and follow-up. 34-38 Provider/patient interactions that promote assertive communication and collaboration have been shown to result in better metabolic control and functional status, more positive self-evaluation of health, and greater patient satisfaction.39,40 In a recent study, 41 certified diabetes educators (CDE) were asked to indicate which theoretical approaches (respondents were allowed to endorse more than one approach) had most influenced the way they provide DSME. The theoretical approach most frequently chosen (98%) was empowerment. The empowerment approach to collaborative diabetes care and DSME is described in the next section.
When patients make self-management choices that differ from the recommendations of their providers, it is a source of concern and frustration for those providers. This issue has been primarily described in the literature as patient noncompliance or nonadherence and has resulted in approximately 1500 citations related to diabetes alone. Over the past 15 years, diabetes care providers and researchers have questioned the usefulness of compliance or adherence as a conceptual framework to understand and influence the selfmanagement behavior of patients with diabetes.45-49 Research in this area has led to the realization that the problem defined as nonadherence in diabetes is largely the result of defining the roles, responsibilities, and expectations of patients and health care providers in
diabetes care as they are defined in the treatment of acute illness.50 It also assumes the recommendation was right for the patient and feasible for the provider. Diabetes care requires a collaborative approach in which health care professionals are responsible to patients rather than responsible for them. Assuming that patients with diabetes will or even should make substantial changes in their daily lives because such changes have been recommended by health care providers is based on the traditional acute care approach where patients are passively cared for by experts and often do not participate in decision-making. The empowerment approach to DSME is based on the recognition that diabetes and its self-management essentially belong to the patient. Therefore, to be effective, a diabetes self-management plan must be developed cooperatively and be consistent with the patient's needs, resources, and goals. The empowerment approach to DSME seeks to provide information, resources, and psychological and social support to patients so that they can make informed, personally meaningful, and realistic self-management decisions.51 The knowledge needed to make informed decisions about daily diabetes selfmanagement falls into two global domains.51The first domain is expertise about diabetes. This expertise is generally provided by DSME either during one-to-one visits or group programs. The second and equally important domain is self-awareness and psychosocial skills. Because diabetes and its treatment affect the physical, emotional, mental, and spiritual domains of a patient's life, DSME needs to address the impact of diabetes on the totality of that person's life.52 The empowerment philosophy is based on the assumption that to live with and care for diabetes successfully, patients need to have the psychosocial skills necessary to recognize the need for and bring about changes in their personal behavior, their social situations, and the institutions that influence their lives.53
1. Reflect on diabetes self-management experiments. At the beginning of each session, patients are invited to reflect on the results of a selfmanagement experiment chosen at the end of the previous group session (see step 5 below). The self-management experiments are designed to help patients achieve selfselected short-term goals (eg, changing from whole milk to skim milk). 2. Discuss the emotional impact of living with diabetes. Living with diabetes raises emotional issues related to relationships, work, family, economic circumstances, overall health, physical functioning, and other life events. Emotions often have a strong influence on patients' self-management decisions. Discussing the emotional aspects of living with diabetes is usually therapeutic in and of itself. During group sessions patients were encouraged to discuss the emotional impact of living with diabetes. 3. Engage the group in systematic problem-solving. The fundamental principle in forming the structure and process of this DSME program was that the questions and concerns of patients were the focus of the program. The topics and issues discussed during the group sessions were ones introduced by patients. The problems addressed include interacting with health care providers as well as selfmanagement and psychosocial issues. The flow of each session was determined by the questions and concerns introduced by participants during that session. 4. Ask diabetes self-management questions. This component provided the opportunity for patients to inquire about diabetes selfmanagement-related issues. The question-and-answer (Q&A) component provided patients with the diabetes self-management information usually contained in the lectures presented in traditional programs. Often a particular topic area was identified by the educator for a Q&A session to ensure a coherent discussion. 5. Choose a self-management experiment. This component provided patients with an opportunity to identify a self-management experiment to help them achieve one of their short-term goals. However, patients were not pressured to conduct an experiment if they did not wish to. They were then given the opportunity to share their goal and experiment. Sometimes patients revised their plan based on the discussion, but it was made clear that the individuals carrying out the experiment were the best judge of what would work for them. This list of the five core components is intended to provide a conceptual framework for the sessions, not a literal agenda. Living with diabetes is a holistic experience; therefore, in practice, the five core components were usually dealt with in a fluid, dynamic, and integrated fashion. The group process was based on, and therefore bears great fidelity to, the patients' experiences of living with diabetes. Careful records were kept to ensure that all of the content areas required by the national standard for DSME were addressed over the course of the program.22 Table 1 contains questions and strategies for use in each of the five components. These group DSME interventions resulted in significant (P <0.0001 to P <0.01) improvements in metabolic status, self-management behavior, and psychosocial adaptation to diabetes that, with follow-up, were sustained for one year. However, it must be noted that in the study of the six-week program, patients in the six-week wait listed control group started making changes in their self-management behavior as soon as they enrolled in the study.55 After conducting almost 250 of these collaborative, patient-centered group sessions, it is clear that patient participation is lively, enthusiastic, and sustained. These DSME interventions have demonstrated that patients are not interested in diabetes; rather, they are interested in their own diabetes.
Questions
Asking appropriate questions is one of the most effective techniques for promoting critical thinking in patients with diabetes. Questions should not focus on the recall of information (an oral quiz), but rather on helping patients identify and solve problems. For many providers, teaching equals telling, ie, the transfer of information. While providing information is certainly a part of teaching, the creative use of questions is a far more powerful stimulus for learning. Whenever a question is asked, whether it is of an individual patient or a group of patients, that question focuses the attention of the patients on the subject manner contained within the question. For example, imagine that a giant mural painted on a wall represents a patient's life with diabetes, portraying numerous people, events, and locations. Standing in front of the mural the provider turns to the patient and asks, "Who is this person?" or "What does this event mean to you?" These questions focus the attention of the patient on a particular aspect of living with diabetes.
What will you do? When and where will you do it? Who will
ed Did it help them reach their shortterm goals? What did they learn about themse lves from this experie nce? What did they learn about their diabete s selfmanag ement? How can they incorpo rate what they learned into their diabete s selfmanag ement?
up for patie nts? How do they feel when they get a negat ive test result ? How do these feelin gs influe nce their selfmana geme nt decisi ons? How do they feel about how other s react to their diabe tes?
generate possible solutions to the problem Invite the patient to identify facilitators and barriers to implement ing possible solutions Invite the patient to chose one of the solutions based on its "goodnes s of fit" with his/her situation
Encourage participant s to share knowledge within the group Encourage participant s to seek consultatio n with health care providers when necessary Address psychosoc ial, behavioral and clinical issues in an integrated holistic fashion, ie, the way patients experienc e living with and managing diabetes
be involved ? How will you evaluate the outcome of your experim ent?
Asking "just the right question" can prompt an important insights and/or disclosure by a patient. Developing the skill of asking productive questions requires listening attentively to what is being said and then making a judgment about what should come next. The ability to use questions to nurture and challenge patients is an art that can be refined continuously over the course of one's career.
Facilitating Self-Directed Behavior Change The following section details questions for facilitating self-directed behavior change during individual DSME. A. What part of living with diabetes is most difficult or unsatisfying? Would you tell me more about that? Would you give me some specific examples? The purpose of these questions is to focus the discussion on the patient's concerns about living with and caring for diabetes. Providers and patients often have different priorities about the most important issues related to diabetes care. Patients are most likely to make changes that will solve problems that are personally meaningful and relevant to them. B. How does that (the situation described above) make you feel? Are you feeling (insert the feeling, eg, angry, sad, confused, etc.)? Are you feeling this because of (insert the reason)? As mentioned earlier, patients seldom make and sustain changes in situations unless they care deeply about solving the problem or improving the situation. It is common for people to repress uncomfortable emotions, and repressed emotions reduce the energy and clarity necessary for effective problem solving. Discussing the feelings associated with a particular diabetes care situation can energize patients. When patients experience the depth of their anger, sadness, or dissatisfaction by talking about their feelings, they are much more likely to take action. C. How would this situation have to change for you to feel better about it? Where would you like to be regarding this situation in (insert specific time, eg, one month, three months)? What will happen if you don't do anything to change this situation? How will you feel if things don't change? The purpose of these questions is to help patients concretely identify how the situation would appear if it were improved. This means imagining the particulars of the situation if they were to be changed and imagining how the patients would feel if the situation improved. It is also useful to help patients imagine how they would feel if things did not improve. This question helps patients focus on tangible elements in the situation that must change for them to feel better. D. Are you willing to take action to improve the situation for yourself? How important is it to you for this situation to improve? These questions help patients develop clarity about whether or not they are fully committed to changing the situation, which is crucial. However, for the questions to have an impact, patients should feel free to make or not make a commitment to change. It is important that patients do not feel pressured to change to please the provider, because changes made in response to such pressure seldom last. E. What are some steps that you could take to bring you closer to where you want to be? What could you do to help solve this problem? Are there any barriers you would have to overcome? Are there other people who could help you? These questions help patients develop a specific plan that will make their commitment to change more tangible. It is useful to consider the various actions that could be taken,
barriers to those actions, and potential resources (personal and otherwise) that patients could use to help themselves. F. What is one thing that you will do when you leave here to improve things for yourself? This question helps patients focus on the first thing they will do to begin improving the situation. It is useful to end the session by having identified at least one immediate step the patient will take to begin the behavior change process. It is helpful, in many situations, to write down the action so that subsequent visits can include a discussion of how the problem-solving process proceeded and new strategies that can be made if the process was not successful. Patients may wish to take a written copy of their plan home with them. Commitments tend to be more binding when they are expressed publicly and/or documented: "I (the patient), will do (what, when, where, and with whom)." Table 2 contains questions that can be used during group DSME sessions. The following are suggestions for ways to use questions effectively to stimulate learning. 1) Wait for answers. Most teachers wait about one second after asking a question before either answering that question or asking another. However, it takes most people three to five seconds to formulate an answer. One way to develop the habit of waiting an appropriate amount of time after asking a question is to recite a short nursery rhyme silently to yourself. For example, "Baa baa black sheep, have you any wool? Yes sir, yes sir, three bags full." Please feel free to substitute a different nursery rhyme, song, or poem. 2) Use open-ended questions. Open-ended questions usually encourage discussion more effectively than closed-ended questions. Closed-ended questions can be answered yes or no; open-ended questions require a more detailed response. Closed-ended question. Provider: "Have you ever had a low blood sugar reaction?" Open-ended question. Provider: "How do you feel when you have a low blood sugar reaction?" 3) Match questions to patients' knowledge. Most diabetes education focuses on the lower three levels of Bloom's Taxonomy of Educational Objectives: 56 1) knowledge, 2) understanding, and 3) application. If patients are unable to answer questions, it may be that the questions being asked are at a level that is too high for them. A simpler question at a lower level will usually help. For example, if patients seemed unable to discuss how to prevent hypoglycemia, then a question at the understanding (application) level would be appropriate. For example, "What have you learned about low blood sugar reactions?" Conversely, if patients can answer questions too easily, then more complex questions at a higher level of the taxonomy are appropriate. 4) Use questions to move back and forth between principles and applications. Learning can be stimulated continually, shifting the patient's attention back and forth between principles and applications. For example, a discussion about the principles of insulin action could be followed by a question that will prompt a discussion about a specific insulin injection regimen that illustrates those principles. After a discussion has focused on either the applications or the principles, it helps to use questions to shift attention to the other domain to stimulate and reinforce learning.
5) Avoid oral quizzes. Quizzes, disguised as discussions, are usually negative experiences for patients. If it is necessary to test knowledge levels publicly, inform the patients that you are going to ask a few questions to determine their level of knowledge so that you can tailor your instruction. Most people are uncomfortable answering questions incorrectly in a group setting, unless the group has been together for a while and has a very high level of trust. Questions that encourage critical thinking and/or the sharing of personal experiences are more effective in stimulating learning than oral quizzes. 6) Use appropriate tone. The tone of questions can be crucial to their success. Questions that are used to interrogate patients or to try to persuade them to reach preordained conclusions are usually received unfavorably. Patients often resent directed questioning (pointed toward a particular conclusion) because it is manipulative. If you have a point you want to make and are unwilling to accept an alternative point of view, it would be better to make your point as a statement rather than asking questions, hoping that the patients will come up with the "correct" point of view. 7) Use more questions and discussions and fewer lectures. Appropriate use of questions stimulates critical thinking, sharing of personal experiences, problem solving, and reflection. Many providers do not make use of questioning as a learning strategy because they have been conditioned to believe that teaching equals telling. Limit presentations to 10 to 15 minutes because the attention of most patients wanders after that length of time. Long lectures can be broken into short presentations interspersed with question-stimulated discussion sessions. This approach works especially well with adult learners. Educators can use questions to focus the attention of patients on particular topics, thus ensuring required content areas are covered.
8. What one thing could you change between now and our next class that might
make things better for you?
Listening Attentively
Obtaining the maximum value from asking questions requires that providers listen attentively to their patients' answers; this is especially true of questions that encourage patients to share personal experiences.51 Listening attentively means that providers strive to focus their attention on the patient while using their senses, mind, and heart to perceive, understand, and appreciate their patient's experience. This is done by listening to the meaning of the patient's words, explicit and implicit, and tuning in to the fears, hopes, and
anxieties of the patient. Being listened to this way helps patients feel accepted and understood. It is rare for most patients to be listened to without being judged, criticized, or persuaded. Listening to patients without judgment conveys respect and reaffirms the validity of their experience. It also allows patients to lower their defenses and explore more candidly their experience of living with diabetes. Withholding advice, solutions, and provider insights allows patients to see, feel, and express more deeply what is true for them. When provided with this kind of opportunity for personal reflection, patients often realize how deeply they care about the issues related to their diabetes. Problems, goals, barriers, and strategies for change often emerge naturally during the discussion. Free from blame, patients can begin to see and communicate on a deeper and more authentic level, and that communication leads naturally to the identification of the next steps to take. Providers can help patients ask themselves, "What do I really want? What would I have to do to achieve my goals?" To be able to explore and address such questions truthfully can be a wonderful experience. Attentive listening also provides patients with the opportunity to listen to themselves. Asking questions for clarity and summarizing the patients responses not only helps providers better understand the problem, but also helps patients gain insight and clarity. Insight often leads to change. Table 3 contains an attentive listening experiment that providers can use to explore the challenges and benefits of listing attentively to patients.51 This experiment can result in important and useful insights whether done individually or by group of providers who after completing the experiment follow-up with a discussion. Although it is important to listen attentively in any educational setting, one-to-one sessions usually allow for greater degrees of psychological safety, intimacy, and self-disclosure.
Table 3. Attentive Listening Experiment: Diabetes Through the Eyes of the Patient
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1) Ask
"What is the most difficult part of having diabetes for you?" 2) Listen Listen to the patient's story for at least five minutes without interrupting to redirect, offer advice, or express an opinion. The goal of the experiment is to learn about the most difficult part of living with diabetes from the patient's point of view. 3) Encourage If there is a pause, encourage the patient to tell you more of his or her story. You can use an empathic response, eg, "It sounds like you have had a rough time of it," or you can ask an exploratory question, eg, "What's that been like for you?" or "How does that make you feel?" The crucial element of the experiment is to continue to ask open-ended questions (and only questions) for at least five minutes. 4) After the Experiment Continue talking with the patient. Respond as you would naturally. The following questions can be useful for continuing a dialogue with the patient. "How would things have to change for you to feel better about this situation?" "Have you tried to deal with this situation in the past? If so what happened?" "Can you think of any steps that you could take that might bring you closer to where you want to be?" "What can I do to help you?"
Attentive Listening Experiment Results What was the most important thing that you learned about the patient? What was it like for you to listen for five minutes without offering advice or problem solving? How can you incorporate what you learned into the patient's care?
Self-Management Experiment Workbook Directions The workbook is designed to help patients take steps toward better health. It is set up so they can try out changes in their eating, physical activity, responses to stress, or other aspects of their diabetes self-management. A self-management change that fits one person's life will not necessarily fit another's. The final choice about what self-management plan works has to be made individually by each patient.
1. Change from 2/2/06 whole milk to 2% milk 2. Substitute regular French 2/16/06
2/13/06
It works.
Took a few days but tastes fine now. This works fine.
2/28/06
OK.
dressing with reduced-calorie French dressing on salads 3. 10 oz steak in restaurant to 6 oz steak in restaurant 4. Trim all the fat from my steak in a restaurant 5. Vegetables with margarine to vegetables plain. 6. Put low-fat spread on vegetables instead of margarine. 3/4/06 3/9/06 No way! I hate feeling hungry after a meal, especially in an expensive restaurant. No problem.
3/9/06
3/15/06
Fine.
3/17/06
3/21/06
No way!
Vegetables with all the taste sucked out. This isn't heaven, but I can get used to it. After being late twice, I almost gave up on this one, but now that I am used to the walk, I enjoy it. I almost died the first time. Now I climb as many flights as I can and take the elevator the rest of the way.
3/21/06
3/29/06
OK.
7. Park in the 4/3/06 outer lot and walk 1/4 mile to office
4/14/06
OK.
4/18/06
4/26/06
Sometimes.
Because it is impossible to know ahead of time which self-management changes will work for each person, this workbook has been set up as a series of experiments. The purpose of an experiment is to learn. Each time patients experiment with a self-management change they learn something. They learn whether it works and whether they want to make it a permanent part of their self-management. Or they may find that it is not a change they are willing or able to fit into their self-management plan. They can then use what they learn to plan (and try) future self-management experiments. There is no failure in this type of program. Whether patients make a permanent change or not, they know a little bit more about themselves and can make a wiser decision about their next self-management experiment.
CONCLUSION
The human and financial costs associated with diabetes and its complications have been increasing, yet much of this is preventable. Because patients are responsible for the daily management of their illness, diabetes self-
management education is essential to help patients obtain the knowledge, skills, and attitudes they need to improve their metabolic status, self-management skills, and overall quality of life. The role of health care providers as educators, behavior change coaches, and sources of psychosocial support and encouragement is a vital component of their patients' ongoing efforts to succeed as diabetes self-managers. This monograph provides resources that will allow health care professionals to help their patients succeed in the daily self-management of their diabetes.
5. Take advantage of "teachable" moments. Diagnosis is usually a teachable moment. Patients are trying to determine what it means to have diabetes. This is an excellent time to deliver the core messages listed in #2. For a physician, a new finding presents an opportunity. For the pharmacist, a change in the medication regime is another example, especially if patients are starting insulin. In this instance, the provider may have an opportunity to correct common myths about insulin. 6. Dispel common myths patients may have regarding taking insulin, which include: a) It leads to long-term complications. b) It means patients have failed and their diabetes is now much worse. c) It means a very restricted lifestyle. d) It will make managing their diabetes very difficult.
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