Transcript Improving Ethnic/Race Disparities in ESRD by Helping

Improving Ethnic/Race Disparities in
ESRD by Helping Patients make Informed
Decisions about Treatment
L. Ebony Boulware, MD MPH
Associate Professor of Medicine
Johns Hopkins Department of Medicine
Welch Center for Prevention, Epidemiology and Clinical Research
Disclosures
• None
Objectives
• Review public health and economic burden of
ESRD in United States
– ethnic/race disparities in ESRD incidence and
prevalence
• Review ethnic/race disparities in access to
optimal therapies for ESRD
• Discuss use of improved patient decisionmaking to address ethnic/race disparities in
access to optimal treatments
Public Health and Economic Burden of
Chronic Kidney Disease
• 25 million have CKD
• ~560,000 have treated ESRD in
United States
ESRD Prevalence
ESRD Incidence
– poor survival and quality of life
• Cost of treatment for ESRD
rising
– $62,000 per yr per patient
(aggregate $20.8 billion in 2007)
Annual Medicare Costs
for ESRD
• Variation in epidemiology and
care impacting outcomes
– Ethnicity/race
Adapted from USRDS 2009 Annual Data Report
ESRD incidence up to 4 times greater in racial
and ethnic minorities
US Renal Data System Annual Data Report 2009
ESRD Prevalence Greater, Average Age at Onset Less
for Racial Minorities
Blacks
58.7 yrs
Native
Americans
56.6yrs
Asians 60.0 yrs
All 62.8 yrs
Whites 65.0 yrs
USRDS Annual Data Report 2009
Rates adjusted for age and gender
ESRD Prevalence Greater, Median Age of Onset Less
for Ethnic Minorities
Hispanics
58.5 yrs
All
62.8 yrs
Non Hispanics
63.5 yrs
USRDS Annual Data Report 2009
Rates adjusted for age and gender
Disparities in Access to Optimal Care
• Ethnic/race minorities less likely to:
– Receive timely referral for dialysis
– Be waitlisted for deceased kidney transplant
– Receive deceased or live kidney transplants
CHOICE Study: Early versus late dialysis
initiation
• Study Design: Prospective Cohort Study
• Population: 1,041 patients with end stage renal disease
starting dialysis
• Setting: Urban and rural settings for routine dialysis
across US, no selection criteria for patients
• Time from first nephrologist evaluation to first dialysis
– <4 months (late)
– 4-12 months (intermediate)
– greater than 12 months (early)
• Outcomes: Mortality
Blacks more likely to receive late* referrals for
dialysis preparation: CHOICE Study (n=1041)
*
*less than 4 months from incident dialysis; adjusted for age, ethnicity, sex, education health insurance,
comorbidity, marital status, exercise status
Kinchen et al, The Timing of Specialist Evaluation in Chronic Kidney Disease and Mortality. Ann
Intern Med. 2002;137:479-486
Late specialty referrals for dialysis preparation
result in worse outcomes for Blacks (mortality)
*
Kinchen et al, The Timing of Specialist Evaluation in Chronic Kidney Disease and Mortality. Ann
Intern Med. 2002;137:479-486
Blacks more likely to receive HD, less likely to
receive PD or Transplant
United States Renal Data System 2009 Annual Report
African Americans less likely to be waitlisted
and transplanted
Waitlisted
African American
White
African American
US Renal Data System Annual Data Report 2009
Placement of Blacks on Waiting list Does not
Reflect Clinical Appropriateness
Percent
Referred
100
90
80
70
60
50
40
30
20
10
0
Placed on wait list
96
Received transplant
92
85
78
63
52
40
36
17
20
20
3
White
Appropriate
Candidates
Black
Appropriate
Candidates
White
Inappropriate
Candidates
Black
Inappropriate
Candidates
Epstein AM et al. Racial Disparities in Access to Renal Transplantation:
Clinically Appropriate or Due to Underuse or Overuse. NEJM 2000;343:1537-44
Patient, physician, and system factors contribute to
disparities
Medically Suitable &
Possibly Interested
Definitely
Interested
60
% Successful
50
40
30
Pretransplant Work
Up Complete and on
Waiting List
Moved Up Waiting
List and Received
Transplant
51
50 48
39
39
30
36
28
20
10
0
White
Black
Alexander, GC, Sehgal AR. Barriers to Cadaveric Renal Transplantation Among
Blacks, Women and the Poor JAMA 1996; 280:1148-1152
Race Disparities in Utilization of Live Kidney
Transplantation (UNOS 2004-2006)
*
*=p<0.05 compared to Whites; adjusted for age, gender, income, insurance, UNOS region
From: Gore JL, Danovitch GM, Litwin MS, Pham PTT, Singer JS. Disparities in the Utilization
of Live Donor Renal Transplantation. AJT 2009 9:1124-1133
Disparities in Access to Care and
Decision-Making
• To what degree are disparities in use
of/access to optimal therapies
related to the process of decisionmaking about therapies?
Informed Shared Decision-Making
• “Decisions that are shared by doctor and
patient and informed by best evidence, not
only about risks and benefits, but also about
patient-specific characteristics and values”
-Towle and Godolphin, 1999
• Physician competencies and patient
competencies
Towle A, Godolphin W. Framework for teaching and learning informed
shared decision-making. BMJ. 1999; 7212:766-9
Informed Shared Decision-Making:
Physician Competencies
• Develop partnership with
patient
• Establish patient
preferences for role in
decision-making (degree
of involvement)
• Ascertain patient
concerns, expectations
• Identify choices and
evaluate research
evidence in relation to
individual patient
• Present (or direct patient
to) evidence; help patient
reflect on impact of
alternative decisions with
regard to his or her
lifestyle
• Make/negotiate
partnership and resolve
conflict
• Agree on action plan and
complete follow up
arrangements
Towle A, Godolphin W. Framework for teaching and learning informed
shared decision-making. BMJ. 1999; 7212:766-9
Informed Shared Decision-Making:
Patient Competencies
• Define (for oneself) the
preferred doctorpatient relationship
• Articulate (for oneself)
health problems,
feelings, beliefs in an
objective and
systematic manner
• Access information
• Evaluate information
• Negotiate decisions,
give feedback resolve
conflict, agree on action
plan
Towle A, Godolphin W. Framework for teaching and learning informed
shared decision-making. BMJ. 1999; 7212:766-9
Determinants of renal replacement treatment
decisions
System
Factors
Patient
-Knowledge
-Access to information
-Attitudes (e.g. trust)
-Preferences
Physician
-Knowledge,
attitudes about
treatments
-Knowledge of
patient preferences
Family
-Significant care
giving burden
-Involvement affects
treatment
adherence
-Crucial for living
related transplant
What “preference–sensitive” aspects of treatments
should patients and families consider? (examples)
HD
PD
Deceased
Transpl.
3 times per
week
Several times
daily
Medications
daily
Medications
daily
Dialysis
center
Home
---
---
Low to
moderate
High
Moderate
Moderate
Physical
functioning
(SF-36)
54
55
61
52
Mental health
(SF-36)
64
67
77
89
Catheter or
fistula
Catheter
Surgery
Surgery
(recipient and
donor)
Consideration
Time to receive
treatment
Location of
treatment
Self
management
Invasive access
Living
Transpl.
Additional aspects of treatment decisions which
are preference sensitive
• Mortality
• Morbidity (i.e.
infection)
• Cognitive effects of
therapy
• Weight gain
• Body image
• Energy levels
• Mood
•
•
•
•
•
•
Fertility
Sexual function
Social isolation
Convenience
Ability to work
Family
involvement/burden
To what degree do patients, families and
physicians currently discuss treatment options?
• Study 1: Focus group of African American and
non-African American patients and families on
renal replacement therapy
• Study 2: Cross-sectional survey of African
American dialysis patients and family
members
• Study 3: Baseline questionnaire among African
American and non-African Americans patients
with Stage 4 CKD enrolled in a randomized
controlled trial
Study 1 ‘Take Home Points’
• Patients were sick, often started hemodialysis
emergently
• Patients and families knew little about
hemodialysis prior to patients’ initiation
• Patients and families knew very little about
alternative treatment options
Study 2: Patient, physician and family communication
about live kidney transplantation in African Americans
Objective: To ascertain rates of patient-physician and
patient-family discussion of living kidney donation
among families of African American patients with
ESRD
Design:
Cross-sectional study (nested within family genetics study)
2002
Sample: 182 African American dialysis patients , 182
spouses/partners, 81 children
Outcomes:
Awareness, desire for live kidney transplant
Patient-physician discussion about live kidney transplant
Patient-family discussion about live kidney transplant
Boulware LE et al. Preferences, Knowledge, Communication and Patient-Physician Discussion of Living Kidney
Transplantation in African American Families. American Journal of Transplantation 2005; 5: 1503-1512.
Majority of African patients and families aware
of living related kidney transplant option
Boulware LE et al. Preferences, knowledge, communication and patient-physician discussion of living kidney
transplantation in African American families. Am J Transplant. 2005 Jun;5(6):1503-12.
High African American Patient Desire for
Transplant
*Among patients desiring transplant
Boulware LE et al. Preferences, knowledge, communication and patient-physician discussion of living kidney
transplantation in African American families. Am J Transplant. 2005 Jun;5(6):1503-12.
Variable Discussion of Live Kidney Transplant in
African American Families
Patient
Spouse
Patient
Child
Boulware LE et al. Preferences, knowledge, communication and patient-physician discussion of living kidney
transplantation in African American families. Am J Transplant. 2005 Jun;5(6):1503-12.
African American Patient and Family Discussion with
Physicians about Transplant Suboptimal
Boulware LE et al. Preferences, knowledge, communication and patient-physician discussion of living kidney
transplantation in African American families. Am J Transplant. 2005 Jun;5(6):1503-12.
Study 2 ‘Take Home Points’
• African American patients were interested in
transplant
• Patient-family discussion variable
• Patient-physician, family-physician discussion
suboptimal even when patients desired a
transplant
Study 3: Improving discussions about treatment
options in Stage 4 CKD:
Talking About Live Kidney Donation (TALK) Study
• Ongoing RCT (funded by HRSA)
• Goal: improve patient, family and physician
discussion about live kidney transplant as a
treatment option among minorities and nonminorities
• Interventions: culturally sensitive educational
video/booklet, social worker
• Outcome: Consideration of live kidney donation as a
treatment option
• Current enrollment: 95 patients from Baltimore MD,
recruited from local nephrology practices
Eligibility Criteria
• Age 18 to 70, stage 4-5 (non-dialysis dependent CKD)
• No evidence of cancer within 2 years prior to recruitment
date
• No evidence of stage IV congestive heart failure
• No evidence of end-stage liver disease
• No evidence of unstable coronary artery disease
• No evidence of pulmonary hypertension
• No evidence of severe peripheral vascular disease
• No history of HIV
• No chronic (debilitating) infections
• No prior kidney transplant
TALK Baseline Questionnaire
• Desired role in decision-making
• Perceived extent of patient-physician
discussions about dialysis or transplant
Study 3 ‘Take Home Points’
• Most patients want a shared role in decisionmaking
• Most patients have discussed treatment options
with physicians
• Few have discussed key factors regarding
treatments that could aid decision-making
–
–
–
–
Differences in length of life
Differences in quality of life
Financial issues
Family burden
• African Americans more likely to report not
discussing transplant at all
Overall research implications
• Patients often have little time for decision-making
– Improved early (stages 3 and 4) discussions and
preparation for renal replacement therapy needed
• Resources for supporting decision-making limited
– Better educational materials and resources for
patients and families needed
• Discussions with physicians, medical staff limited
(especially for minorities)
– Greater emphasis on informed decision-making
competencies needed
– Special attention to minorities’ needs for discussion
among family and with physicians needed
Growing focus on renal replacement
therapy decision-making in U.S.
(Medicare Improvements for Patients and Providers Act, July 2008)
• Payment for 6 sessions of kidney disease
education sessions (stage 4 CKD)
• Education sessions to provide ‘comprehensive
information’ regarding
– Management of co-morbidities
– Prevention of uremic complications
– Options for renal replacement therapy
• Ensure individual has opportunity to actively
participate in choice of therapy
– Tailored to meet needs of the individual involved
• New payment schedule starts in 2010
Summary
• Large disparities in incidence/prevalence of
ESRD
• Large disparities in access to optimal therapies
– Lack of informed shared decision-making may play
a role in disparities
• Improved informed shared decision-making
will address significant needs overall and
possibly address disparities
Practical Considerations
• Medical professionals should place greater
emphasis on patient, family, physician
discussions about treatment options before
ESRD incidence
• Competencies of shared informed decisionmaking should be emphasized in clinical
practice and training
Informed Shared Decision-Making:
Physician Competencies
• Develop partnership with
patient
• Establish patient
preferences for role in
decision-making (degree
of involvement)
• Ascertain patient
concerns, expectations
• Identify choices and
evaluate research
evidence in relation to
individual patient
• Present (or direct patient
to) evidence. Help patient
reflect on impact of
alternative decisions with
regard to his or her
lifestyle
• Make/negotiate
partnership and resolve
conflict
• Agree on action plan and
complete follow up
arrangements
Towle A, Godolphin W. Framework for teaching and learning informed
shared decision-making. BMJ. 1999; 7212:766-9
END