Chronic Disease Self-Management

1. 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

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

3. 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/

4. 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)

5. 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

6. 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.” • Source: Center for Advancement in Health (1996). Indexed bibliography on Self-management for People with Chronic Disease. Washington DC.. Page 1

7. 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

8. Self-Management Differs From Patient Education Self-Management - 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)

9. 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.

10. 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

11. 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

12. 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)

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

14. 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

15. 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

16. 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

17. The Stanford CDSMP ModelWhy 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

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

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

20. 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

21. 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.

22. 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)

23. 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

24. 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)

25. 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

26. 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.)

27. 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.

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

29. 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/