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

World Kidney Day Los Angeles 2009Building 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

R Bluthenthal et al Eth & Dis, 2006

CPPR Guiding Principles

• Share: – Information and

resources

• Look/Listen:– Community Voices

and Evidence Based

• Record: – Process and Impact

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

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

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).

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

The Building Bridges to Optimum Health for Chronic Kidney Disease Collaborative

• 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

• 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

• 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

• 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

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

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

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?

1. Population education about kidney disease facts– Kidney disease is preventable, is treatable, nutrition can affect

kidney disease 2. Role of personal and family responsibility

– Patients should be proactive; people need to take responsibility; educate via family

3. Barriers to care– Access to good care; denial; people do not know where to go for

information 4. Role of Providers

– Physicians need to understand emotional effect of kidney disease; make information lay person appropriate

5. Financial toll of kidney disease – 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

– 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?

1. Individual challenges – Lifestyle change issues; health diet and cooking challenges;

medical side effects 2. Health system barriers

– Income; insurance; access to care and environmental challenges 3. Interpersonal

– Cultural and social barriers; challenges with doctors and staff; trust issues

4. Education and Awareness – Barriers to understanding, educational and communication

5. Diabetes – 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 DiseaseWorkgroup Meeting

May 7, 2009Sign 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

R Bluthenthal et al Eth & Dis, 2006

CPPR Guiding Principles

• Trust• Respect• Participation• Knowledge• Experience

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– 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

• 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

Hypertension

AIDS neuropathy

Focal GN

SLE nephritis

Membranousnephropathy

HUS

Amyloidosis

Postinfectious GN

African Americans Aged 20-65 Years (n=66,063)

GN=glomerulonephritis; HUS=hemolytic anemia syndrome. Monahan M, et al. Semin Nephrol. 2001;21:394-402.

34

90

96

315

1703

2188

3168

20,748

24,535

0 10,000 20,000 30,000

Routine Tests May Underestimate Kidney Disease Prevalence in HIV

• 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.

• 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.

• 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."

http://www.medscape.com/viewarticle/577580

Reuters Health. July,2008

How do the kidneys work?

ArteryKidney

Ureter

Bladder

Urethra

I-4

Vein

Wastes Out

Clean Blood to Body

Blood In

Your Kidneys and How They WorkYour 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

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.

Diabetes

45%

Hypertension

27%

Unknown/Missing5% Glomerulonephritis

8%

Other*15%

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

Crawford, WKD LA, 2008

Keys To Quality Kidney CareKeys To Quality Kidney Care

• Partnering with your provider to detect kidney Partnering with your provider to detect kidney disease at the earliest stagedisease at the earliest stage

• Things you can do to slow the progress of kidney Things you can do to slow the progress of kidney disease:disease:– Take ACE inhibitors / ARBs Take ACE inhibitors / ARBs – Keep your blood pressure under controlKeep your blood pressure under control– Keep your cholesterol under controlKeep your cholesterol under control– Monitor and control your blood sugarMonitor and control your blood sugar– Avoid OTC products for pain (NSAIDs)Avoid OTC products for pain (NSAIDs)– Consult with your kidney provider before using herbal Consult with your kidney provider before using herbal

productsproducts

Costs of Kidney Failure Are High

Costs for Dialysis & Kidney

Transplantation

Total NIH*

Budget

25.2

23.2Kidney Failure

Accounts for 6% of Medicare Payments

Lost Incomefor Patients Is$2-4 Billion/Yr

(Estimated in $Billions for 2001)

USRDS. Annual Data Report, 2003; NCRR report of NCRR and NIH Budget, 2001

Kinchen, K. S. et. al. Ann Intern Med 2002;137:479-486

Relation between Time of Evaluation by Kidney Doctor and Mortality