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How to Help Kidney Patients Live Long and Live Well: Lessons from Life Options

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. Medical Education Institute. Non-profit organization (501c3)

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How to Help Kidney Patients Live Long and Live Well: Lessons from Life Options

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  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 • Non-profit organization (501c3) • Mission: Help people with chronic disease learn to manage and improve their health • 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 • What patients need • How we know • What you can do • How Life Options can help

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

  5. Paradigm: Acute vs. Chronic Disease

  6. Paradigm: Acute vs. Chronic Disease

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

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

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

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

  11. How We Know:Patient Opinion Studies • 90 phone interviews in 3 sets • Key findings: • Fatigue, dialysis time compromise QOL • Patients want information • Patients are willing to self-advocate

  12. How We Know:Patient Opinion Studies • Questions patients have: • How long will I live? • How well will I live? • 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 • 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.” • 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 Patient Research Professional Research Internet Study Texas USAT ESRD sx-mgmt Social worker study ESRD Self-mgmt Nurse study Pt. Longevity Nephrologist study Pt. Opinion studies (3) ExemplaryPractices (4) Employmentstudy

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

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

  17. MCS of 1 Point: Mortality 2% Odds of hosp. 1% MCS & PCS Predict Morbidity & Mortality • PCS of 1 Point: • Mortality 2% • 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: • More kidney knowledge, higher FWB • More self-management, higher FWB

  19. Self-management Areas • Suggestions to providers • Information seeking • Self-care during dialysis (PCS) • Shared responsibility in care (PCS) • Selective symptom mgmt (PCS & MCS) • [Adversarial]Self-advocacy (MCS) • Impression management (PCS & MCS) Curtin RB et al. Nephrol Nurs J 31(4), 2004:378-387

  20. Corroborating Findings • N=2,418 patients from DMMS Wave 2 • Data were adjusted for case mix • 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: • Self-efficacy explained 47.5% of the variance in 160 dialysis patients’ quality of life1 • Patients randomized to self-efficacy training had significantly lower intradialytic weight gains2 • Patients randomized to empowerment had greater self-care self-efficacy and less depression3 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 A week in the life of a dialysis patient… PD or Home Hemo In-center HD

  23. Dialysis No Treatment/ Death At Risk CKD 1-4 CKD 5 Transplant What You Can Do:See the Big Picture 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 • Begin with the goal in mind • Offer hope for a good life • Socialize patients to partner in care • Conduct needs assessments

  25. What You Can Do:Educate for Self-management • Provide rationales for information • Support patients’ involvement • Use expert patients as role models

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

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

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

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

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

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

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

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

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

  36. Any Self Use of the Internet • In-center dialysis patients: 34.7% • All disabled Americans 38.0%

  37. Use of Internet for Health-seeking

  38. What You Can Do:See Patients’ Potential

  39. What You Can Do:See Patients’ Potential

  40. 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™ • Free, on-line, kidney learning center • Designed for stages 3-5 CKD • Self-management curriculum • In-depth information (16-20 pages/topic)

  43. 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 Kidney School: 16 Modules

  44. Conclusions • ESRD is a chronic disease • Patients’ job is to self-manage—not just comply • A key job of staff is to help patients learn • Free, 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

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