Transcript World Kidney Day Los Angeles

World Kidney Day Los Angeles 2009
Building Bridges to Optimum Health:
A community dialogue to help increase awareness of kidney
disease and
mobilize communities to become active in the promotion of
prevention, early detection and treatment
Roberto Vargas MD, MPH
on behalf of the Building Bridges to Optimum Health for Chronic
Kidney Disease Los Angeles Workgroup
Comprehensive Center for Health Disparities in Chronic Kidney Disease
Charles Drew University/ HAAF/RAND/ UCLA
CPPR Guiding Principles
• Share:
– Information and
resources
• Look/Listen:
– Community Voices and
Evidence Based
• Record:
– Process and Impact
R Bluthenthal et al Eth & Dis, 2006
Community-Partnered Participatory
Research (CPPR)
1. Identify a health issue that fits community
priorities and academic capacity to respond
2. Developing a coalition of community, policy and
academic stakeholders that informs supports,
shares and uses the products
3. Engaging the community through conferences
and workshops that provide information,
determine readiness to proceed and obtain input
4. Initiate work groups that develop, implement,
and evaluate action plans
L Jones, JAMA 2007
Community-Partnered Participatory
Research (CPPR)
1. Identify a health issue that fits community
priorities and academic capacity to respond
2. Developing a coalition of community, policy and
academic stakeholders that informs supports,
shares and uses the products
3. Engaging the community through conferences
and workshops that provide information,
determine readiness to proceed and obtain input
4. Initiate work groups that develop, implement,
and evaluate action plans
L Jones, JAMA 2007
Chronic Kidney Disease
• U.S. prevalence of CKD 13%
– Coresh J, JAMA 2007 Nov;298(17)
• End-Stage Renal Disease (ESRD) disparities and
costs
– Powe NR, Kidney Int. 2003 Aug;64(2)
– U.S. Renal Data System ADR 2008
• Lack of awareness Stage 3, 9.2% 2003-2004
– Plantinga LC, Arch Intern Med. 2008 Nov 10;168(20)
Chronic Kidney Disease
• National Kidney Disease Outcomes
Quality Initiative
http://www.kidney.org/Professionals/kdoqi/
• National Kidney Disease Education
Program
– http://www.nkdep.nih.gov/
Chronic Kidney Disease
• Medicare Improvements for Patients and
Providers Act of 2008
– Sec. 152. Kidney disease education and
awareness provisions.
– Requires the Secretary to establish pilot projects to increase
awareness, screening, and surveillance systems addressing the
prevalence of chronic kidney disease (CKD).
Community-Partnered Participatory
Research (CPPR)
1. Identify a health issue that fits community
priorities and academic capacity to respond
2. Developing a coalition of community, policy and
academic stakeholders that informs supports,
shares and uses the products
3. Engaging the community through conferences
and workshops that provide information,
determine readiness to proceed and obtain input
4. Initiate work groups that develop, implement,
and evaluate action plans
L Jones, JAMA 2007
The Building Bridges to Optimum Health for
Chronic Kidney Disease Collaborative
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Bartlett, Carolyn
Brooks, Zach
Brooks, Walter
Cervantes, Michael
Chan, Angelina
Choice, Kenneth
Davis, I. Jean
Delpino, Eileen
Dyer, Karen
Dyoniziak, Adama
Everett, Mable
Fienberg, Howard
Flowers, Chiquita
Forge, Nell
Gaignaire, Gazelle
Garcia, Jessica
Garcia, Rosa Elena
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George, Sheba
Graves, Etienne
Grawe, Clive
Griffin, Belle
Grimmett, Lona
Hampton, Schynesia
Herring, Marcia
Hidalgo, Laura
Johnson, Lorraine
Jones, Andrea
Jones, Loretta
Kacherova, Lana
Kanooni, Natalie
Kennedy, David
Lee, Katherine
Leuschner, Kristin
Littles, Cynthia
Lopez, Dahianna
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Louis, Margo
Lyons, James G.
Marsch, Douglas
Mitchell, Vivian
Monroe, June
Montoya, Esther
Moore, Emily
Mucarsel, Lilly
Mukai, Lisle
Norris, Keith
Orlandella, Loretta
Pena, Derrick
Pinkerton, Nicole
Ray, Cynthia
Rodriguez, Melanie
Sells, Vivian
Seymour, Lona
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Shaheen, Magda
Siegal, Robin
Stringfield, Jill
Taubman, Ronald
Taylor, Katie
Teklehaimanot,
Senait
Terry, Chrys
Tolliver, Ina
Vargas, Roberto
Villafan, Sandra
Walker, Bridget
Willard, Jess
Williams, Malcolm
Young, Nneze
Young-Brinn,
Angela
Community-Partnered Participatory
Research (CPPR)
1. Identify a health issue that fits community
priorities and academic capacity to respond
2. Developing a coalition of community, policy and
academic stakeholders that informs supports,
shares and uses the products
3. Engaging the community through conferences
and workshops that provide information,
determine readiness to proceed and obtain input
4. Initiate work groups that develop, implement,
and evaluate action plans
L Jones, JAMA 2007
Community-Partnered Participatory
Research (CPPR)
1. Identify a health issue that fits community
priorities and academic capacity to respond
2. Developing a coalition of community, policy and
academic stakeholders that informs supports,
shares and uses the products
3. Engaging the community through conferences
and workshops that provide information,
determine readiness to proceed and obtain input
4. Initiate work groups that develop, implement,
and evaluate action plans
L Jones, JAMA 2007
World Kidney Day 2007
The Community/Professional Conference
• 250 attendees throughout the course of the
day
• 156 evaluations
• 110 participated in the discussion groups
1) What do you think people need to know
about kidney disease?
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Population education about kidney disease facts
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Kidney disease is preventable, is treatable, nutrition can affect
kidney disease
Role of personal and family responsibility
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Patients should be proactive; people need to take responsibility;
educate via family
3. Barriers to care
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Access to good care; denial; people do not know where to go for
information
Role of Providers
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Physicians need to understand emotional effect of kidney disease;
make information lay person appropriate
Financial toll of kidney disease
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Kidney disease is an economic drain when not treated early
2) What are ways we can help people get and
understand this information?
1. Improve Communication-Population level
– Use media, churches, personal stories, can remove
stigma fear & mistrust
2. Provider interventions
– Have providers communicate with patients; medical
provider intervention, testing MD’s should offer
services
3. Policy changes
– Government legislation for intervention; use
incentives
4. Involve family
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family histories
3) Once people understand the risk factors for
kidney disease, what are challenges to
prevention, such as eating a healthy diet or
challenges to treatment, such as taking
medications?
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Individual challenges
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Lifestyle change issues; health diet and cooking challenges;
medical side effects
2. Health system barriers
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Income; insurance; access to care and environmental challenges
Interpersonal
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Cultural and social barriers; challenges with doctors and staff;
trust issues
4. Education and Awareness
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Barriers to understanding, educational and communication
Diabetes
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Addressing growing diabetes population, assisting with diabetes
diagnosis
4) How do we overcome each of these challenges?
• Mass communication educational interventions
– Public information to educate about kidney disease; use the media
• Community partnerships
– Use of available community resources; strengthen community
networks
• Food policy interventions
– Government insurance to increase access; have FDA ban certain
foods
• Individual and self-efficacy interventions
– Accepting responsibility for body, personal responsibility to
prevent ESRD
• Health system interventions
– Routine screenings at doctor’s office, better health care
management, doctors need more ESRD training
• Your participation is completely voluntary. You
can stay for the entire conference even if you
should decide not to participate in one or all of the
research activities.
• Your participation is completely anonymous. We
do not want and you to provide us with any
information that would identify yourself.
• Results from surveys and evaluations will be used
for research purposes.
• All registered participants today will be invited to
participate in the follow-up meetings and the
workgroups to review, analyze and summarize the
results
• The research findings from today will be shared
with anyone who is interested during an open
community feedback session and will serve to
guide post conference workgroups.
• This information will be used to learn about how
to better educate patients and providers about
kidney disease prevention and treatment
• If any of the questions asked make you
uncomfortable you may stop participating at any
time.
• By participating, you will have the opportunity to
share your thoughts about your perceptions of
kidney disease risk and barriers to prevention and
care.
What Next?
“Save the Date”
Building Bridges to Optimum Health for Chronic
Kidney Disease
Workgroup Meeting
May 7, 2009
Sign up at the desk or
Call (310) 794-2985
“What we have in common is more important than
what drives us apart”
“Change will not come from the top, change will
come from an organized grass roots effort”
President Barack Obama
CPPR Guiding Principles
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Trust
Respect
Participation
Knowledge
Experience
R Bluthenthal et al Eth & Dis, 2006
World Kidney Day Los Angeles 2008
Building Bridges to Optimum Health
1. Identify a health issue that fits community
priorities and academic capacity to respond
– Kidney disease is preventable
– Kidney disease is treatable
– Yet there are disparities in who gets kidney
failure that disproportionately affect certain
racial and ethnic group and those without
access to care
World Kidney Day Los Angeles 2008
Building Bridges to Optimum Health
2. Developing a coalition of community, policy and
academic stakeholders that informs supports,
shares and uses the products
– World Kidney Day (WKD) 2007 follow-up workgroup
meetings
– Includes patients, caregivers, providers, researchers,
volunteers and representatives from community, kidney
disease patient, organ donor, transplantation, health care
services and faith-based organizations
World Kidney Day Los Angeles 2008
Building Bridges to Optimum Health
3. Engaging the community through conferences and
workshops that provide information, determine
readiness to proceed and obtain input
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Why a World Kidney Day?
Moving Advocacy to Policy
Kidney Disease Prevention
Finding Health Care Services
Patient Panel discussion
Evaluation and Survey
World Kidney Day Los Angeles 2008
Building Bridges to Optimum Health
4. Initiate work groups that develop,
implement, and evaluate action plans
– WKD 2007 results and workgroup consensus
– Four workgroups
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Education and Awareness
Community Partnerships and Engagement
Patient and Provider Communication
Access to Quality Care
World Kidney Day Los Angeles 2009
Building Bridges to Optimum Health
• Next steps
– Enjoy the conference
• Learn
• Participate
– Fill out the conference evaluation and survey
– Sign up to join workgroup activities
World Kidney Day Los Angeles 2008
Building Bridges to Optimum Health
• This information will be used to help the
workgroups develop their action plans for kidney
disease prevention and treatment
• Filling out the evaluation and survey is completely
voluntary
• Your responses are completely anonymous
• We do not want and you to provide us with any
information that would identify yourself
Renal Disease
Renal Disease In HIV+
• HIV-associated nephropathy (HIVAN) is the most common
cause of chronic renal disease in HIV patients. It is a focal
segmental glomerulosclerosis causing rapid deterioration of
renal function1
• 3rd leading cause of end-stage renal failure for African
Americans 20 to 64 years of age2
1. Herman ES, et al. Semin Nephrol. 2003;23:200-208.
2. Martins D, et al. Am J Med Sci. 2002;323:65-71.
3. Freedman BI, et al. Am J Kidney Dis. 1999;34:254-258.
Renal Disease In HIV+
• Among those with ESRD secondary to HIV/AIDS2
– 88.4% African American
– 7.7% white
• HIVAN is caused by a direct effect of infection of renal
cells by HIV—the virus actively replicates within renal
cells1
– Familial clustering of ESRD among African Americans
with HIV disease3
1. Herman ES, et al. Semin Nephrol. 2003;23:200-208.
2. Martins D, et al. Am J Med Sci. 2002;323:65-71.
3. Freedman BI, et al. Am J Kidney Dis. 1999;34:254-258.
Incidence of End-Stage Renal Disease (ESRD) Among
African Americans by Primary Disease (1999)
Diabetes
24,535
Hypertension
20,748
AIDS neuropathy
3168
Focal GN
2188
SLE nephritis
1703
Membranous
nephropathy
315
HUS
96
Amyloidosis
90
Postinfectious GN
34
0
GN=glomerulonephritis; HUS=hemolytic anemia
syndrome. Monahan M, et al. Semin Nephrol.
2001;21:394-402.
10,000
20,000
30,000
African Americans Aged 20-65 Years
(n=66,063)
Routine Tests May Underestimate
Kidney Disease Prevalence in HIV
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Serum creatinine-based estimates of glomerular filtration rates (GFR) may
overestimate the true GFR in patients with HIV infection and thereby
underestimate the prevalence of kidney disease in these patients.
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Dr. Clara Y. Jones of Tufts University in Boston and colleagues studied 250
HIV-infected subjects on highly active antiretroviral therapy (HAART)
participating in the Nutrition for Healthy Living (NFHL) study and 2,628
subjects enrolled in the National Health and Nutrition Examination Survey
(NHANES) of 2000-2001.
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Conclusion: “Cystatin C levels may be a better marker of abnormal kidney
function in the HIV population, particularly those with chronic viral hepatitis
coinfection... Studies using gold-standard exogenous clearance methods for
measuring GFR are required for more definitive answers."
Reuters Health. July,2008
http://www.medscape.com/viewarticle/577580
How do the kidneys work?
Blood In
Artery
Kidney
Vein
Ureter
Clean
Blood to
Body
Bladder
Urethra
Wastes Out
I-4
Your Kidneys and How They Work
•Your entire blood supply
circulates through the
kidneys every two
minutes. Therefore, your
blood is continuously
being filtered by the
kidneys.
References: 1. American Kidney Fund. Kidney Disease:
A guide for Patients and Their Families. 1997.
Primary Diagnosis for Patients Who Start
Dialysis
Other*
15%
Unknown/Missing
5%
Glomerulonephritis
8%
Diabetes
Hypertension
45%
27%
ESRD, end-stage renal disease.
*Includes cystic kidney disease, urologic disease, and other known causes of end-stage renal disease.
United States Renal Data System. USRDS Annual Data Report: Atlas of End-Stage Renal Disease
in the United States. 2002.
The Risk of Kidney Failure
Is Not Uniform
Relative risks* compared to Caucasians:
African Americans
3.8
Native Americans
2.0
Asians/Pacific Islanders 1.3
Hispanics
1.5
(Compared to Non-Hispanics)
USRDS, 2004
Keys To Quality Kidney Care
• Partnering with your provider to detect kidney
disease at the earliest stage
• Things you can do to slow the progress of kidney
disease:
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Take ACE inhibitors / ARBs
Keep your blood pressure under control
Keep your cholesterol under control
Monitor and control your blood sugar
Avoid OTC products for pain (NSAIDs)
Consult with your kidney provider before using herbal
products
Crawford, WKD LA, 2008
Costs of Kidney Failure Are High
25.2
Kidney Failure
Accounts for 6% of
Medicare Payments
23.2
Lost Income
for Patients Is
$2-4 Billion/Yr
Costs for Dialysis
& Kidney
Transplantation
(Estimated in $Billions
for 2001)
Total
NIH*
Budget
USRDS. Annual Data Report, 2003; NCRR report of NCRR and NIH Budget, 2001
Relation between Time of Evaluation by Kidney Doctor
and Mortality
Kinchen, K. S. et. al. Ann Intern Med 2002;137:479-486