HIV Patient Self-Management Support

1. HIV Patient Self-Management Support Making Sure That Patient Self-Management Works A New Provider Training Curriculum Joseph Rukeyser, PhD

2. Introducing a New Provider Training Curriculum • Overview of patient self-management evidence base • The role of proactive provider team in supporting patient self-management • The training curriculum • Rationale/goals • Activities/experiences/practice • Action planning for program development • Integrating training into practice settings

3. Wagner EH (1998) Effective Clinical Practice, 1;2-4

4. Defining Patient Self-management “I can’t define it, but I know it when I see it.” Justice Potter Stewart Jacobellis v Ohio, 1964

6. Describing the Elephant • People can focus on very different aspects of something, all being right. • You can describe the essential elements of something without being able to define the whole • A wall • A snake • A tree • The whole may be greater than the sum of its parts.

7. Activity 2: Defining Self-management • Health care self-management continuum • Share personal experiences with managing health and health care • Develop an operational definition of self-management

8. Patient Self-Management The ability of patients, in a complementary partnership with their health care providers, to manage the symptoms, treatment, lifestyle behavior changes, and the many physical and psycho-social challenges that are a part of living with chronic diseases. A composite of definitions in the literature

9. The Self-management Elephant • Essential parts of patient self-management • Learning about disease • Developing effective communication skills • Action-planning, decision-making, problem solving • Record keeping • Seeking expert medical care and advice • Using family and peer support and community resources • Maintaining emotional and psychological balance • Practicing health-enhancing behaviors

10. Self-management is more than the sum of its parts • Recognizes the reality of patient responsibility for the majority of decisions and behaviors that affect their health • Respects and supports patient autonomy • Affirms provider responsibility “to” and not “for” patients • Acknowledges that effective medical management requires collaboration between providers and patients

11. Activity 3: Patient Case Study • Andy and Zeke • Brothers with similar health challenges • Different degrees of success with self-management • Different health outcomes • Different concerns Case study based upon Bodenheimer et al, JAMA 2002

12. Active 45-yr old man Family history of MI Hypertension Dyslipidemia Glucose intolerance Former smoker Married with a child Employed and doing well Less active 42-yr old man Family history of MI Hypertension Dyslipidemia Glucose intolerance 15 lb over weight Smoker Divorced Developmentally disabled son Andy Zeke

13. Activity 3: An Evolving Case Study • A focus on Zeke • His concerns • How to support him in improving his self-management skills • What factors contribute to a patient’s ability to manage their health and health care?

14. Activity 4: The To-do List • Small group activity to brainstorm an approach to collaborative care with Zeke • Primary care issues • Assessing Zeke’s concerns, needs, strengths and priorities • Zeke is HIV-positive • How does this affect his care? • What are the key management tasks? • Whose responsibility? (Zeke, providers, both?)

15. Supporting Patients in Self-management • What can we provide to the patient to use in improving their self-management? • What do providers need to help them help patients? • What system supports will help both providers and patients?

16. Activity 5: Patient Self-management Supports • Identifying the need for patient self-management supports • Brainstorming the most appropriate supports for individual tasks • Review of patient self-management supports • Patient-centered • Provider-centered • System-centered

17. Sample Self-management Supports • Patient education (peer-lead; disease-management) • Materials for action-planning, information organization, and decision-making • Collaborative communication, information sharing, and resource development • Collaborative goal-setting, action-planning, and problem solving • System supports (group visits; visit planning; pre-MD visit, open medical records, coordinated provider team) • Clinical indicator self-monitoring • Ongoing assessment and adjustment to changing circumstances

18. Activity 6: Action Planning Role Play • Triad • Provider • Patient: Zeke • Observer • Focus on developing collaborative goal-setting and action-planning skills

19. Action Planning Worksheet Patient Name:______________ Physician Name:______________ Assess patient’s primary concern or problem: (e.g., “What is your greatest concern now?”; “What one thing would you most like to change?”) _________________________________________________ Explore patient’s feelings about the problem: (“What do you think makes this so hard for you?”; “How will you feel if things don’t change?”) ________________________________________________ Identify patient’s goals: (“How would you like the situation to change?” “What one thing do you want to change?”) ________________________________________________ Brainstorm solution ideas: (“What do you think might work or help you to reach that goal?”; How do you think you might solve this problem?”; ”What have you tried in the past?”; “How might I or someone else help you to do this?”) ________________________________________________ Choose a solution and Action Steps to try: (“What do you think you could do?”; “When would you do it?”; How often do you think you could do that?”; What will you do to get started?”) ________________________________________________ Estimate self-efficacy [Use the “Getting to 7” Scale]: (“Does this sound like something you can do?” ”Are you sure this is something you want to do?” “On a scale of 1 to 10 how likely is it that you will actually be able to do that?” )

20. “Getting to 7” Use the scales below to estimate how likely it is that you will be able accomplish the goal you have set. Write the goal on the line above the first 1-to-10 scale. The goal should be “what you will do by when.” Then circle the number, on a scale of 1 to 10, which shows how likely you think it is that you will actually accomplish the goal. Goal: ___________________________________________________. Not Likely Very Likely 1 2 3 4 5 6 7 8 9 10 If you selected a number below 7, try to revise your goal to make it more realistically fit what you think you can actually accomplish. Revised Goal: ____________________________________________. Not Likely Very Likely 1 2 3 4 5 6 7 8 9 10

21. Barriers to Initiating Patient Self-management Support Programs • Comfort with traditional model of care • Reluctance to lose “control” • Time constraints • Unpreparedness for dealing with “non-medical” issues • Reimbursement • Lack of skills training

22. Activity 7: Program Action Planning • Identifying concerns and barriers to patient self-management program development • Personal action-planning for program development or implementation • Group feedback and program discussion

23. Self-management Support Improves Patient Involvement and Self-efficacy • Growing evidence that supporting patient self-management: • Reduces hospitalizations • Reduces ER visits • Reduces overall managed care costs • Increases patient satisfaction with care • Improves health outcomes • Glycemic control • Nocturnal asthma symptoms • Blood pressure control Coleman and Newton, Am Fam Physician, 2005

24. Self-management Support Improves Patient Involvement and Self-efficacy • NYS HIV Center interviews with providers and patients • Patient involvement in decision-making increases patient “ownership” of care • Patients who feel more in control of their care tend to have better long-term health outcomes • Good Doctors, Good Patients: more involved HIV patients do better (even in pre-HAART era)(Rabkin, Remien, and Wilson, 1994) • New UK Good Medical Practice guidelines on working in partnership with patients(Moszynski, BMJ, 2006)

25. Curriculum Summary • Training curriculum goals: To meet the needs of providers in developing individual expertise in patient self-management support To assist providers in initiating or further developing practice-based patient self-management support programs To improve the quality of HIV/AIDS health care by fostering collaborative interaction between patients and their providers in support of increased patient self-efficacy and self-management

26. Curriculum Summary • Targeted toward a range of care providers • Modular • Interactive • Experiential • Learner-centered • Brief (~4 hours) • Model for collaborative approach

27. Discussion • Pilot training and curriculum revision • Potential utilization of provider training • Hurdles to overcome in initiating trainings • Resources to utilize

28. Selected References Anderson R. Patient Empowerment and the Traditional Medical Model. Diabetes Care. 1995;18(3):412-5. Bodenheimer T, Lorig K, Holman H, et al. Patient Self-management of Chronic Disease in Primary Care. JAMA.2002;288(19):2463-2475. Coleman M and Newton K. Supporting Self-management in Patients with Chronic Illness. Am Fam Physician 2005;72:1503-10. Glasgow R, Davis C, Funnell M, et al. Implementing practical interventions to support chronic illness self-management. Jt Comm J Qual Saf. 2003;29(11):563-74. Gifford A, Laurent D, Gonzales V, et al. Pilot Randomized Trial of Education to Improve Self-Management Skills of Men with Symptomatic HIV/AIDS. JAIDSHR. 1998;18:136-144. HRSA HIV AIDS Bureau. Self-Management and the Chronic Care Model. HRSA CARE Action. January 2006. Warsi A, Wang P, LaValley M, et al. Self-management Education Programs in Chronic Disease. Arch Intern Med. 2004;164:1641-1649.