E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms:...
Transcript of E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms:...
![Page 1: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/1.jpg)
EARLY IDENTIFICATION& INTERVENTION IN
CKDKevin Fowler
The Voice of the Patient, Inc.
![Page 2: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/2.jpg)
LEARNINGOBJECTIVES
• Patient/Family Perspective: Understanding Our Journey and Narrative
• Patient Engagement: Opportunities and Barriers
• The Business and Moral Case for Early Detection + Intervention of CKD
• The Future of Nephrology
![Page 3: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/3.jpg)
WEST VIRGINIA1935: OUR
FAMILYNARRATIVE
![Page 4: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/4.jpg)
DUVALLFAMILY:
ST.LOUIS1950’S
![Page 5: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/5.jpg)
Starting Dialysis: August 1981• Uncertain Future• Emotional Impact on Family• Positive Example• Fear
![Page 6: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/6.jpg)
October 1981
• 48 Years Old• Three Children• Able to Participate in Life• Unknown Future
![Page 7: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/7.jpg)
May 1983
• Diminished Quality of Life• Symptoms: Fatigue, Nauseous,
Fluid Overload, • Diminished Ability to Participate
in Life• Uncertain Future• Hemodialysis Treatment: 50%
Mortality at 5 Years
![Page 8: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/8.jpg)
October 2000
• Influence of Family Narrative• Role of Primary Care Physician• Limitations of GFR• Self-Diagnosis• Self-Referral
![Page 9: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/9.jpg)
Starting a New NarrativeBrent Miller, MDProfessor of Clinical MedicineUniversity of Indiana
![Page 10: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/10.jpg)
Catalyst for Patient Engagement
• Strong Interpersonal Skills
• Coach/Teacher
• Set High Expectations
• Engaged with the End in Mind
![Page 11: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/11.jpg)
August 2004
• Detection of PKD: Three Years to Find a Living Donor
• Pre-Emptive Kidney Transplant
• Restoration of my Health
• Returned to Work
• Successfully Rehabilitated
![Page 12: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/12.jpg)
New Life: Gratitude + Managing Risk• Best Treatment Option, Not a
Cure• Emotional Understanding• Discipline• Gaps in Patient Care• ½ of Kidney Transplants Fail at
10 Years
![Page 13: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/13.jpg)
Barriers to Patient Engagement
• System not Serving Kidney Disease Patients
• Family/Community Narratives on Kidney Disease
• Large Dialysis Organizations
• Reimbursement Incentives
• Low Expectations
![Page 14: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/14.jpg)
Belding Scribner, MD• Goal of Dialysis Treatment-
Rehabilitate the Patient• Home Dialysis• Priority of Patient
Engagement• Bridge to Kidney Transplant• Prophecy
![Page 15: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/15.jpg)
Prevalence of CKD 3-5
15.2
16.9
12.5 12.8 12.8
0
2
4
6
8
10
12
14
16
18
Non HispanicWhite
Non-HispanicBlack/African
American
MexicanAmerican
Othe Hispanic Other Non-Hispanic
Race/Ethnicity
USRDS 2017 Annual Data Report
Prev
alen
ce (p
erce
ntag
e)
2011-2015
![Page 16: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/16.jpg)
Trends in ESRD incidence in US, race
2017 USRDS
Inci
denc
e pe
r mill
ion
pop
0.0
200.0
400.0
600.0
800.0
1,000.0
1,200.0
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015
White Black/African American American Indian or Alaska Native Asian
Black/African American
By age, sex, race, ethnicity and primary CKD cause
![Page 17: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/17.jpg)
Prev
alen
ce (p
er m
illio
n)
Prevalence of ESRD
USRDS 2017 Annual Data Report
1519
5705
2315
1905
WHITE BLACK AMERICAN INDIAN/ALASKAN
NATIVE
ASIAN
3.7-fold
![Page 18: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/18.jpg)
18vol 2 Figure 9.7 Total Medicare ESRD expenditures, by modality, 2004-2016
2018 Annual Data Report Volume 2 ESRD, Chapter 1
Data Source: USRDS ESRD Database. Total Medicare costs from claims data for period prevalent ESRD patients. Abbreviation: ESRD, end-stage renal disease.
![Page 19: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/19.jpg)
Trends in ACE/ARB and Angiotensin II Use with Impaired Kidney Function in US ACE/ARB: Use Increased 1999-2014
Utilization Plateaued in 2003
<50% Utilization in CKD Patients
![Page 20: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/20.jpg)
State of Nephrology Profession
• 40% of Nephrology Fellowships Unfilled (Appointment Year 2018)
• Poor Job Satisfaction and Burnout
• 5850 Oncology Clinical Trials vs <500 Kidney Disease Clinical Trials ( 2017)
• 29 Oncology approvals vs 2 Kidney Disease approvals (2015-2017)
![Page 21: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/21.jpg)
Unprecedented Opportunity
Kidney Health Initiative
Kidney Precision Medicine Project
Kidney X Executive Order
ASN
![Page 22: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/22.jpg)
Surrogate Endpoints for Kidney Disease
Clinical Trials
European Medicines AgencyFood and Drug AdministrationNational Kidney Foundation
![Page 23: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/23.jpg)
Therapeutic Interventions
on the Horizon
• ADPK• Alport Syndrome• Diabetic Kidney Disease• FSGS• IGAN• SGLT2i
![Page 24: E IDENTIFICATION & I CKD - KDIGO · 1/1/2019 · • Diminished Quality of Life • Symptoms: Fatigue, Nauseous, Fluid Overload, • Diminished Ability to Participate in Life •](https://reader036.fdocuments.in/reader036/viewer/2022071509/6129bd89bacd8e40ef148760/html5/thumbnails/24.jpg)
My Aspiration• Patient-Centered• Risk-Benefit Conversations• Innovation • Invest in Patient Engagement