Self-management support Thomas Bodenheimer MD with lots of help from Improving Chronic Illness Care

Self-management support is more than patient education Patient educationPatient education –Information and skills are taught –Usually disease-specific –Assumes that knowledge creates behavior change –Goal is compliance –Health care professionals are the teachers Self-management supportSelf-management support –Skills to solve patient- identified problems are taught –Skills are generalizable to all chronic conditions –Assumes that confidence yields better outcomes –Goal is increased self- efficacy –Teachers can be professionals or peers

Why is self-management support important? Every person self-manages his/her chronic condition. 99% of chronic care decisions are made by the patient away from the health care systemEvery person self-manages his/her chronic condition. 99% of chronic care decisions are made by the patient away from the health care system The question is, does the person self- manage well or poorly?The question is, does the person self- manage well or poorly? Managing well improves clinical outcomesManaging well improves clinical outcomes

Self-management support and compliance/adherence Compliance/adherence may not be helpful conceptsCompliance/adherence may not be helpful concepts Noncompliance or non-adherence assumes that 1) the patient has the information needed to make healthy decisions, and 2) the patient was involved in the decisionsNoncompliance or non-adherence assumes that 1) the patient has the information needed to make healthy decisions, and 2) the patient was involved in the decisions Often, neither 1) nor 2) is trueOften, neither 1) nor 2) is true

Compliance/adherence Compliance: “the extent to which a person’s behavior (in terms of taking medications, following diets, or executing lifestyle changes) coincides with medical or health advice.” Lutfey and Wishner, Diab Care 1999;22:635.Compliance: “the extent to which a person’s behavior (in terms of taking medications, following diets, or executing lifestyle changes) coincides with medical or health advice.” Lutfey and Wishner, Diab Care 1999;22:635. Adherence “the extent to which a patient’s behavior (in terms of taking medication, following a diet, modifying habits, or attending clinics) coincides with medical or health advice.” McDonald et al. JAMA 2002;288:2868.Adherence “the extent to which a patient’s behavior (in terms of taking medication, following a diet, modifying habits, or attending clinics) coincides with medical or health advice.” McDonald et al. JAMA 2002;288:2868.

Compliance/adherence Compliance and adherence are synonymsCompliance and adherence are synonyms They are also the same as “patient self- management behaviors” or “healthy behaviors”They are also the same as “patient self- management behaviors” or “healthy behaviors” Use the term “healthy behaviors” as having the same meaning as compliance or adherenceUse the term “healthy behaviors” as having the same meaning as compliance or adherence “Healthy behaviors” doesn’t compare patients with some professionally-set standard“Healthy behaviors” doesn’t compare patients with some professionally-set standard

Compliance/adherence For doctors, the word “compliance” (with practice guidelines) is appropriateFor doctors, the word “compliance” (with practice guidelines) is appropriate Docs chose to be docs. They should held to a standard: do what’s evidence-basedDocs chose to be docs. They should held to a standard: do what’s evidence-based Patients didn’t choose to be chronically ill. They can’t be held to a standardPatients didn’t choose to be chronically ill. They can’t be held to a standard For patients, the words “compliance/ adherence” are less appropriateFor patients, the words “compliance/ adherence” are less appropriate

Many people fail to choose healthy behaviors because they lack information One study: 76% of patients with type 2 diabetes received limited or no diabetes educationOne study: 76% of patients with type 2 diabetes received limited or no diabetes education 300 medical encounters: doctors spent average 1.3 minutes giving information300 medical encounters: doctors spent average 1.3 minutes giving information Another study: only 37% of patients were adequately informed about medications they were takingAnother study: only 37% of patients were adequately informed about medications they were taking Clement, Diab Care 1995;18:1204. Waitzkin. JAMA 1984;252:2441

Many people choose unhealthy behaviors because they lack information 50% of patients leave office visit not understanding what the doctor said50% of patients leave office visit not understanding what the doctor said Study of 264 visits to family physicians. During patient initial statement of the problem, physician interrupted after average of 23 seconds.Study of 264 visits to family physicians. During patient initial statement of the problem, physician interrupted after average of 23 seconds. Failure to provide information to patients about their chronic condition is associated with unhealthy behaviors. If people don’t know what to do, they don’t do itFailure to provide information to patients about their chronic condition is associated with unhealthy behaviors. If people don’t know what to do, they don’t do it O’Brien et al. Medical Care Review 1992;49:435. Kravitz et al. Arch Intern Med 1993;153:1869. Roter and Hall. Ann Rev Public Health 1989;10:163. Marvel JAMA 1999;281:283.

Information is necessary but not sufficient Information by itself does not improve clinical outcomes; people with diabetes gaining knowledge about their condition do not have lower HbA1c than those uninformed. Norris et al. Diab Care 2001;24:561Information by itself does not improve clinical outcomes; people with diabetes gaining knowledge about their condition do not have lower HbA1c than those uninformed. Norris et al. Diab Care 2001;24:561 An additional factor is needed An additional factor is needed That additional factor appears to be collaborative decision making, which makes the patient an active participant in his/her management. Patients in empowerment classes have lower HbA1c than controls. Anderson, Funnell. Diabetes Care 1995;18:943.That additional factor appears to be collaborative decision making, which makes the patient an active participant in his/her management. Patients in empowerment classes have lower HbA1c than controls. Anderson, Funnell. Diabetes Care 1995;18:943.

Many people choose unhealthy behaviors because they were not involved in clinical decisions Study of 1000 physician visits, the patient did not participate in decisions 91% of the timeStudy of 1000 physician visits, the patient did not participate in decisions 91% of the time When patients are involved in decisions, health- related behavior is improved and clinical outcomes (for example HbA1c levels) are better than if patients are not involvedWhen patients are involved in decisions, health- related behavior is improved and clinical outcomes (for example HbA1c levels) are better than if patients are not involved Braddock et al. JAMA 1999;282;2313. Heisler et al. J Gen Intern Med 2002;17:243. Greenfield et al. J Gen Intern Med 1988;3:448

Back to compliance/adherence One cannot expect a patient to “comply” with a physician’s advice if the patient doesn’t understand the adviceOne cannot expect a patient to “comply” with a physician’s advice if the patient doesn’t understand the advice One cannot expect a patient to “adhere” to a physician’s advice if the patient doesn’t agree with the adviceOne cannot expect a patient to “adhere” to a physician’s advice if the patient doesn’t agree with the advice Much “noncomplance/nonadherence” (i.e. unhealthy behaviors) is related to inadequate information-giving and lack of collaborative decision makingMuch “noncomplance/nonadherence” (i.e. unhealthy behaviors) is related to inadequate information-giving and lack of collaborative decision making

Does self-management support attempt to improve patient compliance/adherence? No, the purpose of self-management support is to encourage patients to become informed and activatedNo, the purpose of self-management support is to encourage patients to become informed and activated –By providing information –By encouraging collaborative decision-making –By assisting people to set their own goals Many (not all) patients will choose goals that do improve their health-related behaviorsMany (not all) patients will choose goals that do improve their health-related behaviors

Informed, Activated Patient Productive Interactions Prepared, Proactive Practice Team Functional and Clinical Outcomes Delivery System Design Decision Support Clinical Information Systems Self- Management Support Health System Resources and Policies Community Health Care Organization Chronic Care Model

Informed, activated patient Key conclusion: Informed, activated patients have healthier behaviors and improved clinical outcomes Golin et al. Diab Care 1996;19:1153. Piette et al. J Gen Intern Med 2003;18:624. Francis et al. N Engl J Med 1969;280:535. Roter. Health Educ Monographs 1997;5:281. Greenfield, Kaplan et al. J Gen Intern Med 1988;3:448. Heisler et al. J Gen Intern Med 2002;17:243.

Informed, activated patient Requires:  Information-giving  Collaborative decision-making  These are the two parts of self- management support

The 15-minute system Short, unplanned MD visit, no team Patient not taught about her illness No collaborative decision making Uninformed, passive patient Unprepared practice team

We need to redesign primary care delivery systems to provide self- management support, which creates informed, activated patients Information-giving Collaborative decision-making

The 5 A’s A clinical algorithm used for tobacco cessationA clinical algorithm used for tobacco cessation Has become part of the US Public Health Service guidelines on quitting smokingHas become part of the US Public Health Service guidelines on quitting smoking It has been adopted for other health- related behaviorsIt has been adopted for other health- related behaviors

Self-management support in office practice ASSESS Knowledge Beliefs, Behavior, Barriers, Confidence ADVISE Provide personalized information about condition and benefits of change AGREE Collaborative goal and action plan ASSIST Use motivational techniques and teach problem-solving ARRANGE Follow-up and resources

Assess KnowledgeKnowledge SkillsSkills ImportanceImportance ConfidenceConfidence SupportsSupports BarriersBarriers Risk FactorsRisk Factors Let’s look at Importance and Confidence

Bubble chart Kate Lorig’s question: “Is there anything you would like to do this week to improve your health?” Physical activity Healthy diet Taking medications Checking sugars Other things? Reducing stress?

If patient picks a domain, assess readiness to make a change Readiness = importance and confidence If patient doesn’t think it’s important, he/she won’t make a change. Give information If patient thinks change is important, but has no confidence that he/she can change, assess and try to increase confidence

“How important do you think it is to exercise to improve your blood sugar?” Not at all convinced Totally convinced Assessing Importance Patient says 4 “Why 4 and not zero?” “What would it take to move it to a 8?” (From Keller and White, 1997; Rollnick, Mason and Butler, 1999)

How confident are you that you can exercise to improve your blood sugar? Not at all confident Totallyconfident Patient says 4 “Why 4 and not zero? “What would it take to move it to an 8?” Assessing Confidence

Advise Provide specific personalized information about the chronic illness, the health risks and the benefits of change

Advise: provide information Information-giving is disease-specificInformation-giving is disease-specific Telling people 150 facts about diabetes does not work. It is far more effective to find out what people want to know, and give them the information they want.Telling people 150 facts about diabetes does not work. It is far more effective to find out what people want to know, and give them the information they want. Also, make sure people understand the information given themAlso, make sure people understand the information given them 2 tools2 tools –Ask-tell-ask –Closing the loop

Advise: Ask-Tell-Ask When patients are given a lot of information, they regain only a small amount Ask-tell-ask: Ask patients: “What do you know about your diabetes, and what would you like to know? When patients say what they want to know, tell them. Then ask again: what do you think about what you heard, and are there other things you want to know?

Advise A study of patients with diabetes found that in only12% of patient visits, the clinician checked to see if the patient understood what the clinician had told the patient This is called “closing the loop” In 47% of cases of closing the loop, the patient had not understood what the physician said When closing the loop took place, HbA1c levels were lower than when it did not take place Closing the loop should be an integral part of advising patients Schillinger et al. Arch Intern Med 2003;163:83.

Agree Collaboratively select goals and an action plan to meet those goals

Action plan Something you WANT to do 1. Something you WANT to do 2. Describe HowWhere WhatFrequency When 3. Barriers 4. Plans to overcome barriers 5. Confidence rating (1-10) 6. Follow-Up plan Source: Lorig et al, 2001

Action plan: example Something you WANT to do: Get more activity 1. Something you WANT to do: Get more activity 2. Describe: How: With friendWhere: 3 times around block What: WalkFrequency: Mon, Wed, Fri, Sat When: After lunch 3. Barriers: Forget 4. Plan to overcome barriers: Put a note on fridge 5. Confidence rating (1-10): 7 6. Follow-Up plan: medical assistant will call me next week

Action plan Base goals on patient priorities Action plans are specific steps to help achieve goals Action plans should be easily achievable with confidence level 7 or greater Purpose is to increase self-efficacy: a person’s confidence that he/she can make changes to improve life

Assist Problem-solving to help overcome barriers to achieving goals

Problem Solving Identify the problem. 1. Identify the problem. 2. List all possible solutions. 3. Pick one. 4. Try it for 2 weeks. 5. If it doesn’t work, try another. 6. If that doesn’t work, find a resource for ideas. 7. If that doesn’t work, accept that the problem may not be solvable now. Source: Lorig et al, 2001

Arrange Schedule follow-up to provide ongoing assistance and support to adjust or change or problem-solve the action plan as needed

Arrange: follow-up Try a wide variety of methods, whichever patient prefers (in-person, phone, )Try a wide variety of methods, whichever patient prefers (in-person, phone, ) Make sure follow-up happens, patient trust can be destroyed by missed follow-upMake sure follow-up happens, patient trust can be destroyed by missed follow-up Use outreach and community opportunitiesUse outreach and community opportunities Easiest is to see if patient wants to go a group, in which case follow-up takes place in the groupEasiest is to see if patient wants to go a group, in which case follow-up takes place in the group Follow-up can be done by other patients (buddy system)Follow-up can be done by other patients (buddy system)

Opportunities for self management support Before the EncounterBefore the Encounter During the EncounterDuring the Encounter After the EncounterAfter the Encounter From Russ Glasgow, PhD

Opportunities for self management support Before the Encounter Pre-visit contact (phone, mail, , PDA, touch- screen computer, student, medical assistant) Pamphlets on “Talking to Your Provider”

Pre-activation of patients 10 minute meeting with health educator to help patients formulate questions for physician led to more patient involvement in decisions [Roter. Health Educ Monographs 1997;5:281]10 minute meeting with health educator to help patients formulate questions for physician led to more patient involvement in decisions [Roter. Health Educ Monographs 1997;5:281] Interactive pre-visit booklet -- to write down agenda topics and learn techniques for recalling physician advice -- led to better retention of information and healthier behaviors -- lifestyle changes and medication use [Cegala et al. Arch Fam Med 2000;9:57]Interactive pre-visit booklet -- to write down agenda topics and learn techniques for recalling physician advice -- led to better retention of information and healthier behaviors -- lifestyle changes and medication use [Cegala et al. Arch Fam Med 2000;9:57]

Pre-activation of patients 20-minute pre-visit meeting to prepare patients with diabetes to participate in decision-making20-minute pre-visit meeting to prepare patients with diabetes to participate in decision-making Pre-activated patients had greater control over visit agenda (shown by audiotapes) than control patientsPre-activated patients had greater control over visit agenda (shown by audiotapes) than control patients Pre-activated patients had better HbA1c levels than control patientsPre-activated patients had better HbA1c levels than control patients Greenfield, Kaplan et al. J Gen Intern Med 1988;3:448

Opportunities for self management support During the Encounter Assess what goals patient wants to work on See if patient willing to discuss action plan Information-giving (ask-tell- ask) Closing the loop Referral to community resource

Planned chronic care visits Group diabetes visits at Kaiser/Permanente led by nurse educator: significantly lower HbA1c levels and lower hospital use compared with controls [Sadur et al.Diab Care 1999;22:2011]Group diabetes visits at Kaiser/Permanente led by nurse educator: significantly lower HbA1c levels and lower hospital use compared with controls [Sadur et al.Diab Care 1999;22:2011] Diabetes “mini-clinics” at Group Health in Seattle: for patients who regularly attended the clinics, better glycemic control than usual care patients [Wagner et al. Diab Care 2001;25:695]Diabetes “mini-clinics” at Group Health in Seattle: for patients who regularly attended the clinics, better glycemic control than usual care patients [Wagner et al. Diab Care 2001;25:695]

Planned chronic care visits Nurse-led diabetes planned visit clinic had better HbA1c levels than controls [Peters, Davidson. Diab Care 1998;21:1037]Nurse-led diabetes planned visit clinic had better HbA1c levels than controls [Peters, Davidson. Diab Care 1998;21:1037] Planned diabetes visits with nurse and endocrinologist had lower mortality and lower incidence of MI, revascularization, angina, ESRD than control patients; median follow-up was 7 years [So et al. Am J Managed Care 2003;9:606]Planned diabetes visits with nurse and endocrinologist had lower mortality and lower incidence of MI, revascularization, angina, ESRD than control patients; median follow-up was 7 years [So et al. Am J Managed Care 2003;9:606] Patients attending planned diabetes empowerment classes had lower HbA1c levels compared with controls [Anderson, Funnell et al. Diab Care 1995;18:943]Patients attending planned diabetes empowerment classes had lower HbA1c levels compared with controls [Anderson, Funnell et al. Diab Care 1995;18:943]

Planned chronic care visits Planned visits are essential to assist people to adopt healthy behaviorsPlanned visits are essential to assist people to adopt healthy behaviors Planned visit is antidote to “tyranny of the urgent” -- acute issues crowding out chronic care managementPlanned visit is antidote to “tyranny of the urgent” -- acute issues crowding out chronic care management Visits can be with nurses, pharmacists, health educators, nutritionists, promotoras, or trained patientsVisits can be with nurses, pharmacists, health educators, nutritionists, promotoras, or trained patients Group or individual visitsGroup or individual visits

Opportunities for self management support After the Encounter Referrals (health educator, medical assistant, community resource) Phone, , web follow-up Peer support (buddy system) Chronic disease self- management course

Regular, sustained follow-up VA system: nurse-initiated phone contacts between visits improved glycemic control compared with usual care [Weinberger et al. J Gen Intern Med 1995;10:59]VA system: nurse-initiated phone contacts between visits improved glycemic control compared with usual care [Weinberger et al. J Gen Intern Med 1995;10:59] Cochrane Review: 5 RCTs -- better HbA1c levels in patients with regular follow-up compared with controls [Griffin, Kinmouth. Cochrane Library, Issue 3, 2001]Cochrane Review: 5 RCTs -- better HbA1c levels in patients with regular follow-up compared with controls [Griffin, Kinmouth. Cochrane Library, Issue 3, 2001] Regular follow-up is a predictor of proper medication use [Dunbar-Jacob. Health Psychology 1993;12:91]Regular follow-up is a predictor of proper medication use [Dunbar-Jacob. Health Psychology 1993;12:91]

Regular, sustained follow-up Diabetes education without regular follow-up is unlikely to result in long- term behavior change success [Clement. Diab Care 1995;18:1204]Diabetes education without regular follow-up is unlikely to result in long- term behavior change success [Clement. Diab Care 1995;18:1204] Follow-up can be done by visits with any caregiver, in groups, patient buddies, promotoras, telephone, , webFollow-up can be done by visits with any caregiver, in groups, patient buddies, promotoras, telephone, , web

Chronic Disease Self- Management Program Developed and studied by Kate Lorig and colleagues at Stanford Peer-leaders (patients with chronic illness), 6 sessions, 2 1/2 hours each Addresses multiple conditions Goal-setting, action plans, problem solving, skill acquisition Patients call each other between sessions Outcomes: improved health behaviors and health status, fewer hospitalizations; some improvements sustained for 2 yrs Lorig et al. Medical Care 1999;37:5, 2002;39:1217

Who can do goal-setting, action plans, follow-up? Trained peers Health educators Nurses Physicians Medical assistants Students Any caring person...

Resources Book: Rollnick et al. Health Behavior Change Book: Lorig, Holman, Sobel et al. Living a Healthy Life with Chronic Conditions. 2nd edition. Palo Alto, Bull Publishing, Bibliography on self-management: Download Action Plan forms in English, Spanish and Chinese:

Web resources provides provider training in “Choices and Changes” has books, videos and trainingwww.motivationalinterview.org home of Chronic Disease Self-Management Programwww.stanford.edu/group/perc

Take-home points Self-management support includes –Information-giving –Collaborative decision-making –Goal-setting/problem-solving It can be done before, during, and after a primary care visit. Planned chronic care visits are the ideal place A primary care physician cannot do self- management support alone. It takes a team.