Chronic Disease Self-Management A Patient-Centered Option for Managing the Healthcare Challenge Presentation prepared by: John Irwin, Healthcare & Community Informatics Consultant, Stanford Licensed Chronic Disease Self-management Program Master Trainer

Today you will hear… An introduction to chronic disease self-management A closer look at one evidence-based self-management program

Impacts of Chronic Disease Chronic disease will increase 300% by 2049 Chronic disease results in pain, debilitation, disability, dependence, lost physical function, and less mobility Chronic diseases include: heart disease, cancer, stroke, arthritis, asthma, lung disease, cancer, diabetes, hypertension, osteoporosis, multiple sclerosis, Parkinson’s disease… Sources: NGA study; Stanford University Patient Education Center , http://www.stanford.edu/group/perc/

Financial Reality - Rising costs… Chronic disease costs: 75-95% of health care expenditures! By 2030: Anticipated increase in healthcare costs tied to chronic disease, 25% to 54% Sources : Partnership for Solutions: Better Lives for People with Chronic Conditions, WA State ; Health Affairs, 2005; 24 (1) 80-92; Center for Healthy Aging (NCOA)

People With Chronic Disease Report… Significantly reduced productivity Living with less income Accomplishing less Spending more time in bed sick Having poor mental health Sources: Stanford University (Lorig, K.); Center on an Aging Society, National Institute on Aging

Self-Management Definition “Involves [the person with the chronic disease] engaging in activities that protect and promote health, monitoring and managing of symptoms and signs of illness, managing the impacts of illness on functioning, emotions and interpersonal relationships and adhering to treatment regimes.” Self Management involves a partnership between individuals and their health workers. In this relationship the individual has some responsibilities. They include: engaging in activities which promote their health. monitoring and managing their symptoms day-to-day adhering to treatments that have been agreed to with health workers. When the individual has mastered these skills, they are said to be good self managers. Source: Center for Advancement in Health (1996). Indexed bibliography on Self-management for People with Chronic Disease. Washington DC.. Page 1

Self-Management Benefits Patients… Builds confidence (self-efficacy) to perform 3 tasks - Disease management - Role Management - Emotional Management Focuses on improved health status and appropriate health care utilization Self Efficacy is a combination of confidence level and knowledge to achieve something, i.e. one may have the confidence but not the knowledge. Disease Management : monitoring, recording and responding to symptoms. Role Management: partnerships that include taking an active role in planning care and responsibility in keeping to the plan. Emotional Management: managing the emotional impact that the disease has on their life, family, social and economical Quality of life: focus on quality of life by improving their health status and appropriate use of resources

Self-Management Differs From Patient Education - Manage life with disease - Increase skills & self-confidence - Problem solve and make decisions Patient Education - Change behaviors - Increase knowledge - Use specific tools (e.g., Care Plans, Action Plans) A chronic disease may never be cured. We are looking to improve quality of life.

Self-Management Also Encompasses The patient and health professional working together. Often involves the family. An holistic approach to care (i.e., medical and psycho-social components of a condition). Pro-active and adaptive strategies that aim to empower the individual. The other side of the self-management relationship involves the healthcare provider. Their responsibilities include: Working with the patient as different but equal partners. The healthcare provider is like an expert consultant regarding disease and treatments. The patient is the expert in how the disease is effecting him/ her personally, day-to-day. Health decisions need to be made together, in consideration of the disease, and the day-to-day effect it is having. Acknowledging that there is more to the patient than the disease, and that the disease effects more than the patient’s body. Listen for other interventions that may be required, even if they are not directly linked to the disease, eg, social supports (is their caretaker getting any respite?, does the client they have any social networks?), other conditions that are effecting the patient’s daily living (deafness, incontinence). Etc Responsible for supporting the whole person, not a ‘condition’.

Patients Increasingly Want to Retain Independence More people with chronic disease believe… They have a “right” to take part. They are capable of taking part, with the right supports. Patient assertiveness is necessary…and needed. Source: California Healthcare Foundation

Chronic Disease Self-Management Assumptions Patients with different chronic diseases have similar self-management problems and disease-related tasks. Patients can learn to take day-to-day responsibility for their diseases. Confident, knowledgeable patients practicing self-management will experience improved health status and use fewer health resources. Source: Lorig and Holeman 2003 Point 1 “If life were fair, we'd each be limited to a single major health problem…But it isn't. Diseases, like wolves, tend to travel in packs.” Harvard Heart Letter, 01-JUL-03

Self-Management Framework Patients accept responsibility to manage or co- manage their own disease conditions. Patients become active participants in a system of coordinated health care, intervention and communication. Patients are encouraged to solve their own problems with information, but not orders, from professionals. Sources: Stanford University Patient Education Center; Center for Healthy Aging (NCOA)

Self-Management Skills Problem-solving Decision-making Resource Utilization Formation of a patient- provider partnership Action-planning Self-tailoring Source: Lorig and Holeman 2003

Chronic Disease Self-Management Means… Taking care of your illness (using medicines, exercise, diet, technology, physician partnership) Carrying out normal activities (employment, chores, social life) Managing emotional changes (anger, uncertainty about the future, changed expectations and goals, and depression) It means having a combination of … SKILLS, SUPPORT, PRACTICE and CONFIDENCE Six principles of Self Management 1. Know your condition. 2. Be actively Involved in decision making with your healthcare provider. 3. Follow the care plan developed with your healthcare provider. 4. Monitor symptoms associated with the condition(s) and take appropriate action to respond and cope with the symptoms. 5. Manage the physical, emotional and social Impact of the condition(s) on your life. 6. Adopt a Lifestyle that promotes health and does not worsen the symptoms or the condition’s impact.

Chronic Disease Self- Management Program (CDSMP) …the Stanford Model Developed by Stanford University’s patient education program Structured w/~15 participants in a six-week series of workshops Participative instruction with peer support Designed to enhance medical treatment Outcome-driven: impacts show potential for reduced or avoided costs Evidence-based: a tested model (intervention) that has demonstrated results

Stanford’s CDSMP is Evidence-based Found to truly benefit targeted populations. Demonstrated it does not cause harm. Demonstrated it does not waste resources. Reference: http://www.aoa.gov/evidence/evidence.asp; www.healthyagingprograms.org

The Stanford CDSMP Model Why these techniques work… Peer educators Constant modeling Active problem-solving Formal brainstorming Goal-setting Action planning Source: National Council on Aging, http://www.ctb.1si.ukans.edu, www.healthyagingprograms.org Peer educators – workshop leaders “share” techniques. Not a “sage on a stage!”

CDSMP Content P Content/Week 1 2 3 4 5 6 Overview of self-management and chronic health conditions P   Making an action plan Relaxation / Cognitive symptom management Feedback / Problem solving Anger / Fear / Frustration Fitness / Exercise Better breathing Fatigue Nutrition Advance directives Communication Medications Making treatment decisions Depression Informing the healthcare team Working with your healthcare professional Future plans

Participant’s Learn How to Manage the Symptom Cycle Disease Fatigue Tense Muscles VICIOUS CYCLE Depression Stress/Anxiety Anger/Frustration/Fear

Participant’s Learn and Practice Action Planning Something YOU want to do Reasonable Behavior-specific Answer the questions: What? How much? When? How often? Confidence level of 7 or more Examples: I will manage my weight gain problem by cutting back on after dinner snacks by eating ½ of an apple instead of cookies. My confidence level is 8. I will go to bed by 10:00 PM every night to ensure a good night of sleep. My confidence level is 8. I will walk to and from the mailbox Monday through Saturday at noon to get started back on some regular physical activity. My confidence level is 7. I will read a chapter in my new book each night before going to bed to help relax for sleep. My confidence level is 9.

The Stanford Model: Content… “meets the test of common sense” Techniques to deal with frustration, fatigue, pain, and isolation. Exercises/activities for maintaining and improving strength, flexibility, and endurance. Medication management. Approaches for improving communication with friends, family and health professionals. Nutrition information. Treatment evaluation information.

The Stanford Model: Impact All studies looked at behavior, health status and utilization. Findings included: Improved self-efficacy Reduced use of doctors, hospital emergency rooms Improvements in health status - identified by BOTH the participant and the health provider Sources: Stanford University Patient Education Center; Society of Behavioral Medicine publication (2003)

Impact (continued)… Improved quality of life Specific improvements in healthful behaviors Improvement in overall health status Decreased hospital stays: .49 days, per patient, over a two year time period Decreased physician/emergency room use: 2.5 fewer visits to the emergency room and to physicians, per patient, over a two year time period Source: Stanford University Patient Education Center; Center for Healthy

Specific health-related impacts… Increased physical activity Cognitive symptom management Improved communication with physicians Better self-reported general health Improved attitude Less health distress Less fatigue Reduced disability Fewer social/role limitations Sources: Stanford University Patent Education Center; published articles 1997-2003 (Lorig, K)

Creating an effective chronic disease self-management system locally - Key Ingredients Infrastructure Community networks Partnerships Financial support Sustained marketing On-going recruitment Source: “Challenges and Successes in Implementing the Chronic Disease Self-Management Program”, National Council On Aging, http://www.healthyagingprograms.org/resources/CDSMPFinalReport.pdf

Reasons to support this approach… Disease and demographic challenges will be unrelenting - “We need to start yesterday…” Limited availability of reliable, evidence-based (proven) approaches to chronic disease self-management Better utilization of current resources necessary; more efficient use of physician time desired Sources: Society of Behavioral Medicine publication (Lorig K., Holman, H.)

Summary Chronic Disease Self-Management is: Managing the work of dealing with a chronic disease and/or multiple disease conditions. Managing the work of dealing with daily activities in light of debilitation and disability. Managing emotional changes resulting from or exacerbated by the disease conditions.

Once a chronic disease is present, one cannot NOT manage, the only question is “how.” (Bateson 1980, Lorig, 2003)

For further information… Contact: John Irwin Health & Community Informatics Consulting (541) 664-2456 jirwin@mind.net www.callineb.com Or Sharon Johnson Oregon State University (541) 776-7371 x210 s.johnson@oregonstate.edu Additional information & results of studies: http://patienteducation.stanford.edu/