Minority Affairs Committee Report

OPTN/UNOS Board of Directors MeetingJune 25-26, 2012

Silas P. Norman, MDChairman

Minority Affairs Committee Update

Educational Guidelines on Patient Referral to Kidney Transplantation

Ongoing CPRA Analysis

Minority Donor Conversion Data Review

New Proposed MAC Projects

MAC - To increase access and transplants among minority populations

NOTA – Increase access, equitable allocation OPTN Strategic Goal – Increase the number of

transplants Significant challenge is timely access to kidney

transplant referrals

Educational Guidelines on Patient Referral to Kidney Transplantation

The majority of patients have seen a nephrologist < 12 months at the time they initiate dialysis

Many patients spend significant time on dialysis prior to referral for kidney transplant evaluation

Minority populations tend to be referred later for kidney transplant evaluation

The result is few pre-emptive transplants and excess patient mortality

Background

Access to Evaluation

CKD and ESRD patients need increased access to kidney transplant evaluation

The lack of timely evaluations directly impacts the ultimate number of transplants

We assume that with the proper information and incentives, providers and patients would improve timely referrals

What Is the Need?Provider Education

Providers must: understand the allocation system well enough to

care for patients. understand what constitutes timely referral. understand the need for timely referral. understand barriers to timely referral. be able to deliver/refer patients to accurate

transplant information.

Patient EducationPatients must:

understand the allocation system well enough to advocate for themselves.

understand what constitutes timely referral. understand the need for timely referral. understand barriers to timely referral. be able to locate sources of accurate transplant

information.

What Is the Need?

The default pathway for CKD and ESRD patients should be transplant referral

Preemptive transplant is the goal and can only be achieved with “early” referral

Education about transplant has to begin long before ESRD (Stage 3-4 CKD) to be most effective

Key Points

Abstracts presented at recent American Transplant Congress meeting highlighted:

Impact of early transplant education on outcomes Patients presented to transplant evaluation without

prior education were less likely to be transplanted Impact of external structural environment on access

Poverty, geography, etc. impact on referral and transplant

ATC

Improved patient outcomes

Minimizing extra work

CKD Stage 4 education reimbursement

Incentives

12+ months in the making

Subcommittee of the MAC Subsequently reviewed by full committee Expanded review in progress

Guidelines seek to educate providers about allocation, barriers and consequences of late referral

Guidelines provide direction for timely education and referral

Draft Guidelines

Representatives from professional transplant partner organizations AST NKF/KDOQUI STSW

OPTN Committees Kidney Patient Affairs Living Donor Transplant Administrators

Joint MAC/Organizational Representatives MOTTEP ASN AMAT

Expanded (Joint) Subcommittee

Review of draft document Major missing topic areas Major errors

Dissemination plan Identifying target groups/stakeholder groups Thinking about the best way to reach groups Minimizing duplication of efforts of other committees/groups

Expanded (Joint) Subcommittee

Guidelines Document Sections Purpose Background Kidney Function Interest in Transplant Co-morbid Conditions Medical Non-Adherence Substance Abuse Cognitive Impairment

Financial Status

Transplant Evaluation

Living Kidney Donation

Multiple Wait Listing

Barriers to Transplantation

Transplant Education

FAQ’s

Information Resources

References

Feedback from participants: Consensus building within their constituent groups Key contacts Media suggestions Educational strategies

Input/review to be solicited from: HRSA/CMS KDOQUI/KDIGO Board Internal UNOS staff

Timeline

Dissemination of the Guidelines

Development of Implementation Strategy

Development of Educational Initiatives

Development of Patient Friendly Version of Guidelines

Future Activities

Evaluation of Calculated PRA (CPRA) Policy for Allocation of Deceased Donor Kidneys: Transplant

Rates by Ethnicity and Sensitization Level

Adult Kidney Registrations as of 2/10/12 38% White, 34% Black, 18% Hispanic, 7% Asian and

2% other ethnicities

16% -- CPRA value of 80-100%

9.8% waiting with current CPRA ≥ 98% 43% were Black 35% White 14% Hispanic 6% Asian 2% other ethnicities

TX Rate Changes Post Policy Implementation

Significant decrease for non-sensitized (CPRA 0%) and low sensitized (CPRA 1-20%) White, Black, and Hispanic candidates

Significant increase for White, Black, and Asian moderately sensitized (CPRA 21-79%) candidates

No significant change among American Indian/Alaska Native, Native Hawaiian/Other Pacific Islander, or Multiracial candidates, regardless of sensitization level

Changes in TX Rates Significant increase for highly sensitized (CPRA 80-

100%) White, Black, and Hispanic candidates

Significant increase among White, Black, and Hispanic candidates with a CPRA of 80-97%, but decrease (although not significant) in transplant rates for those with CPRA of 98-100%

Also true for Asian candidates, although the decrease in transplant rates for those candidates with CPRA ≥ 98% was significant

Eligible Donor Conversion RatesBy Region and Ethnicity

Eligible Donor Conversion Rates, 2/1/08-11/30/11by Year: All Regions

Eligible Donor Conversion Rates, 2/1/08-11/30/11by Donor Ethnicity: All Regions

Eligible Donor Conversion Rates 2/1/08-11/30/11By Year and Ethnicity: All Regions

Results Across all regions and donor ethnicities the donor

conversion rate was 70.1% It ranged from 67% in 2008 to 73% in 2011

Overall conversion rate was the highest among donors of multiracial ethnicity (85%), followed by:

White donors (78%) Hispanics (67%) Blacks (55%) Asians (48%) Native Hawaiians/other Pacific Islanders (46%) American Indians/Alaska Natives (40%)

Results

Within each region, eligible donor conversion rates varied among donor ethnic groups.

Regions 4 and 6 seemed to have increasing conversion rates across different donor ethnic groups during 2008-2011.

New Proposed Committee Projects

Survey on Referral to Heart Transplantation

Study of Best Practices in Minority Donor Conversions

Deanna L. Parker, MPA

Wida Cherikh, Ph.D

Special Thanks