1. How to Help Kidney Patients Live Long and Live Well: Lessons from Life Options Dori Schatell, M.S. Executive Director, Medical Education Institute Director, Life Options Rehabilitation Program

2. Medical Education Institute u Non-profit organization (501c3) u Mission: Help people with chronic disease learn to manage and improve their health u Examples of our recent work: Life Options Rehabilitation Program Kidney School™ Home Dialysis Central Core Curriculum for the Dialysis Technician

3. What We’ll Cover u What patients need u How we know u What you can do u How Life Options can help

4. MEI: Research-based Approach Publish research results Conduct and review qualitative and quantitative health behavior research Translate and integrate findings into research- based education materials

5. Paradigm: Acute vs. Chronic Disease Duration Goal Patient job Staff job Acute Disease Short Cure Comply Provide Care Chronic Disease Long Adapt Manage Sx Self-manage Provide care Prepare pts to self-manage

6. Paradigm: Acute vs. Chronic Disease Duration Goal Patient job Staff job Acute Disease Short Cure Comply Provide Care Chronic Disease Long Adapt Manage Sx Self-manage Provide care Prepare pts to self-manage

7. Life Options Rehabilitation Program Dedicated to helping people live long and live well with kidney disease

8. Life Options Model Care Delivered by Providers + Input Follow- through by Patients = Input - “Health” - Longevity - Quality of Life - Vascular Access Outcomes

9. What Patients Need: Preparation to Self-manage What Patients Need: Preparation to Self-manage A week in the life of a dialysis patient… In-center HD PD or Home Hemo

10. How We Know Professional Research Patient Research Employment study Exemplary Practices (4) Pt. Opinion studies (3) Pt. Longevity Nephrologist study Nurse study Texas USAT ESRD Self-mgmt ESRD sx-mgmt Social worker study Internet Study

11. How We Know: Patient Opinion Studies u90 phone interviews in 3 sets uKey findings: Fatigue, dialysis time compromise QOL Patients want information Patients are willing to self-advocate

12. How We Know: Patient Opinion Studies u Questions patients have: How long will I live? How well will I live? u Messages that resonate: Hope: Life can still be good Learn: Ask questions/get answers Adhere: Follow the treatment plan

13. How We Know: Patient Longevity Study u Key finding: Affirmations:  Self preservation: “I want to live.”  Self identity: “I am still me.”  Self worth: “I am still valuable.”  Self efficacy: “I am in control.” u Key finding: Active, comprehensive self- management Curtin RB, Mapes D, Petillo M, Oberley E. Long-term Dialysis Survivors: A Transformational Experience. Qual Health Res 12(5): 609-624.

14. How We Know Professional Research Patient Research Employment study Exemplary Practices (4) Pt. Opinion studies (3) Pt. Longevity Nephrologist study Nurse study Texas USAT ESRD Self-mgmt ESRD sx-mgmt Social worker study Internet Study

15. How We Know: ESRD Self-management Study N=372 patients from 17 facilities Collected the following data: uDemographics uSelf-management activities uKidney disease knowledge uFunctioning & well-being (SF-36)

16. Functioning & Well-being: PCS + MCS Scores Physical Component Summary: PCS Mental Component Summary: MCS

17. MCS & PCS Predict Morbidity & Mortality MCS of 1 Point: u Mortality 2% u Odds of hosp. 1% PCS of 1 Point:  Mortality 2% u Odds of hosp. 2% Lowrie EG et al. Medical Outcomes Study Short Form-e6: A Consistent and Powerful Predictor of Morbidity and Mortality in Dialysis Patients. AJKD 41(6), 2003:1286.

18. How We Know: ESRD Self-management Study Key findings: u More kidney knowledge, higher FWB u More self-management, higher FWB

19. Self-management Areas uSuggestions to providers uInformation seeking uSelf-care during dialysis (PCS) uShared responsibility in care (PCS) uSelective symptom mgmt (PCS & MCS) u[Adversarial] Self-advocacy (MCS) uImpression management (PCS & MCS) Curtin RB et al. Nephrol Nurs J 31(4), 2004:378-387

20. Corroborating Findings u N=2,418 patients from DMMS Wave 2 u Data were adjusted for case mix u Patients whose care was “patient-led” had:  Significantly lower unadjusted death rates (p<0.0001)  Significantly higher transplant rates (p<0.0001) Stack AG, Martin DR. Transplantation April; 45(4), 2005: 730-42

21. Corroborating Findings A recent series of studies from Taiwan found that: uSelf-efficacy explained 47.5% of the variance in 160 dialysis patients’ quality of life 1 uPatients randomized to self-efficacy training had significantly lower intradialytic weight gains 2 uPatients randomized to empowerment had greater self-care self-efficacy and less depression 3 1 Tsay SL et al, Int J Nurs Stud. 39(3):245-51, 2002 2 Tsay SL. J Adv Nurs 43(4):370-5, 2003 3 Tsay SL, Hung LO. Int J Nurs Stud. 41(1):59-65, 2004

22. What Patients Need: Preparation to Self-manage What Patients Need: Preparation to Self-manage A week in the life of a dialysis patient… In-center HD PD or Home Hemo

23. What You Can Do: See the Big Picture CKD 5CKD 1-4 At Risk No Treatment/ Death Curtin RB, Becker BN, Kimmel PL, Schatell D. An integrated approach to care for patients with chronic kidney disease. Sem Dial. 16(5):399-401, 2003

24. What You Can Do: Educate for Self-management uBegin with the goal in mind uOffer hope for a good life uSocialize patients to partner in care uConduct needs assessments

25. What You Can Do: Educate for Self-management uProvide rationales for information uSupport patients’ involvement uUse expert patients as role models

26. How We Know Professional Research Patient Research Employment study Exemplary Practices (4) Pt. Opinion studies (3) Pt. Longevity Nephrologist study Nurse study Texas USAT ESRD Self-mgmt ESRD sx-mgmt Social worker study Internet Study

27. Life Options Internet Study u Methodology :  National random sample: 2 clinics/Network  All patients surveyed per clinic for 2 days  10-question survey in English & Spanish  Sent surveys, pencils, envelopes  Clinics paid $250 honorarium

28. Life Options Internet Study  37 clinics from 18 ESRD Networks u n = 1,804 u Age range: 18-97 u Median age: 63 u Gender: 55.7% male; 43.7% female u Clinic response rate: 78.7% u Subject response rate: 87%

29. Mean Education Level of English- reading Participants? A.6th grade B.8th grade C.10th grade D.12th grade

30. Mean Education Level of English- reading Participants? A.6th grade B.8th grade C.10th grade D.12th grade

31. Mean Education Level of English- reading Participants N = 1599 11% 14.9% 39.4% 20.5% 9.8% 3.8%

32. Compulsory Education Laws To age 16 To age 17 To age 18

33. Mean Education Level of Spanish-reading Participants? A.6th grade B.8th grade C.10th grade D.12th grade

34. Mean Education Level of Spanish-reading Participants? A.6th grade B.8th grade C.10th grade D.12th grade

35. Mean Education Level of Spanish-reading Participants? 68% N = 162

36. Any Self Use of the Internet u In-center dialysis patients:34.7% u All disabled Americans38.0%

37. Use of Internet for Health-seeking

38. What You Can Do: See Patients’ Potential

41. How Life Options Can Help: Free, Research-based Materials

42. How Life Options can help: Kidney School™ u Free, on-line, kidney learning center u Designed for stages 3-5 CKD u Self-management curriculum u In-depth information (16-20 pages/topic)

43. Kidney School: 16 Modules  What kidneys do  Treatment options  Care team  Adherence  Coping  Anemia  Kidney lab tests  Vascular access  Nutrition & fluids  Adequacy  Sexuality/Fertility  Staying active  Heart health & BP  Responsibilities  Alternative therapies  Long-term effects

44. Conclusions uESRD is a chronic disease uPatients’ job is to self-manage—not just comply uA key job of staff is to help patients learn uFree, research-based materials are available to help you help your patients

45. Helping Kidney Patients Live Long and Live Well Medical Education Institute www.lifeoptions.org www.kidneyschool.org www.homedialysis.org