Department of Health and Human Services 

OFFICE OF 

INSPECTOR GENERAL 

NATIONAL MARROW DONOR PROGRAM 

EFFECTIVENESS IN RETAINING DONORS 

# OEI-01-95-O0121 
OFFICE OF INSPECTOR GENERAL 

The mission of the Office of Inspector General (OIG), as mandated by Public Law 95-452, is to 

protect the integrity of the Department of Health and Human Services programs as well as the 

health and welfare of beneficiaries served by them. This statutory mission is carried out through a 

nationwide program of audits, investigations,evaluations,sanctions, and fraud alerts. The 

Inspector General informs the Secretary of program and managementproblems and recommends 

legislative, regulatory, and operational approaches to correct them. 

OFFICE OF EVALUATION AND INSPECTIONS 

The OIG’SOffice of Evaluation and Inspections(OEI) conductsshort-term management and


program evaluations(called inspections)that focus on issues of concern to the Department, the


Congress, and the public. The inspectionreports provide findings and recommendationson the


ei%ciency,vulnerability, and effectivenessof departmentalprograms.


OEI’SBoston Regional Office prepared this report under the direction of Mark R. Yessian, Ph.D.,


Regional Inspector General. Principal OEI staff included:


Boston Refion Headmuu-ters


Russell W. Hereford, Ph.D., Project Leader Alan Levine, Program Specialist


Elizabeth Robboy, Program Analyst


To obtain a copy of this report, contact the Boston Regional Office by telephone at


(617) 565-1050 or by fax at (617) 565-3751.

Department of Health and Human Services 

OFFICE OF 

INSPECTOR GENERAL 

NATIONAL MARROW DONOR PROGRAM 

EFFECTIVENESS IN RETAINING DONORS 

# 0EI-01-95-O0121 
EXECUTIVE SUMMARY 

PURPOSE 

To assess the effectiveness of the National Marrow Donor Program 

bone marrow transplants between unrelated volunteer individuals. 

BACKGROUND 

in retaining donors for 

Bone marrow transplantation is a treatment for blood borne diseases such as leukemia and 

lymphoma. For a transplant to be successful, the patient’s and donor’s blood cell 

proteins, or human leukocyte antigens (HLA), must match as closely as possible. 

The Natioml Marrow Donor Program (NMDP)is a nonprofit organization based in 

Mimeapolis, Minnesota, that finds matching donors for patients seeking a transplant. It 

operates the congressionally authorized marrow donor registry under contract with the 

Health Resources and Services Administration (HRSA). The NMDPaccredits donor centers 

that recruit volunteers to join the registry, which contains almost 1.5 million potential 

donors in 97 domestic donor centers. 

Volunteers who join the registry have their blood typed for the HLA-Aand -B antigens. If 

a patient seeking a transplant matches with a donor’s antigens, the donor center contacts 

that donor for first level followup testing to type the donor’s HLA-DRantigens. If these 

antigens match, the donor may be called for second level confiiatory testing, which may 

lead to marrow domtion and transplantation. 

Some potential donors, however, do not proceed to followup testing. The term retention 

rate refers to donor centers’ success in keeping donors when they are called for followup 

testing. 

This report is based on data maintained by NMDP;a mail survey of 88 of the 97 domestic 

donor centers; and site visits to 9 donor centers across the country. 

FINDINGS 

The overall donor retention rate has remained about the same over the past 3 years. 

While the retention rate has improved for first level followup testing, it has declined 

for second level confirmatory testing. 

Donor retention at first level testing improved to 73 percent for the year ending 

September 1995, up from 66 percent for the year ending September 1993. 

However, donor retention at confhrnatory testing declined to 75 percent for the 

year ending September 1995, down from 81 percent for the year ending September 

1993. 

i 
Retention rates among donors from racial and ethnic minority groups lag behind 

those for whites. 

At first level testing, tieretention rate forminority donors fiproved to66 percent 

for the year ending September 1995, up from 55 percent for the year ending 

September 1993. In comparison, the retention rate among white donors grew from 

71 percent to 76 percent. 

However, retention of minority donors at confkmatory testing declined to 60 

percent fortheyear ending September 1995, down from 67percent for the year 

ending September 1993, while it fell from 83 to 81 percent among white donors. 

Even though the decrease in donor retention rates at confirmatory testing is small, it 

still raises some concerns. 

The NMDPand donor centers have gained substantial experience in donor registration and 

education, adopted new technologies for locating donors, and developed continuous 

process improvement indicators. We had expected ongoing improvement in retention. 

Although improvement was evident at frost level followup testing, we found that this was 

not the case at confiiatory testing. Our review identified three factors that may explain 

this trend: 

Luck of direct donor commitment at the jirst level followup stage. Some donors


were typed for their HLA-DRantigens at initial registration. Because only verbal


permission is required, these donors do not need to be tested again until the


confhnatory testing stage. All new minority donors are typed at registration to


more readily identify matches. This front end typing may provide one important


explanation for the greater decrease in their retention rate at confirmatory testing.


Potential conj-lict between a rapidly growing re~”s~ and donor education. Some


donor centers may be emphasizing increases in the number of donors on their list,


rather than attracting donors who will come forward when called. Some centers


may not be doing an effective job of educating donors at initial recruitment about


what will be required of them in the event of a match.


No awareness of decline in confirmatory testing retention rate. Some donor


centers may not recognize the decline in donor retention rates at confiiatory


testing. Even though donor retention is declining at this stage, donor centers


responding to our survey cited obstacles to retention less frequently at contlrmatory


testing than they did at first level testing.


We raise concerns about the decline in retention at confhmatory testing for two reasons: 

Pti”ent expectations are high at confirmatory testing. A request for confiiatory 

testing occurs when a patient awaiting a transplant knows that a preliminary 

ii 
potential donor match has been identified. Failing to retain donors at this stage 

means that the patient’s hopes for a transplant may have been raised unrealistically. 

Losing donors at confirmatory testing is costly for pti”ents awaiting transplant. 

When a patient requests that a potential donor be tested for HLA-DRantigens, that 

patient is billed an average of $264. The patient must pay for that test, even if the 

donor does not come forward at confkrnatory testing. 

RECOMMENDATIONS 

The Health Resources and Services Administration shouId specify, either upon issuing 

the forthcoming contract or through a future modification of that contract, the 

overall retention rate to be achieved by the registry. The current contract specifies 

goals for recruitment of donors and minority donors, as well as for the number of 

transplants. However, the contract does not contain goals for retention of donors, the 

important middle step in that process. We urge HRSAto speci~ the target retention rate 

within the fwst year of the new contract. 

To the extent that resources are available, the Health Resources and Services 

Administration, working with the National Marrow Donor Program, should support 

demonstration projects that test alternative strategies for retaining donors. We urge 

that particular attention be paid to demonstrations that seek to increase the retention rate 

among donors from racial and ethnic minority groups. 

The National Marrow Donor Program should work with donor centers to develop and 

implement methods for improving retention at both the first attempt and subsequent 

attempts to contact donors. We hope that improving retention among donors from racial 

and ethnic minority groups will be a focus of these efforts. We encourage NMDPalso to 

put in place plans for evaluating the success of these methods and a strategy for 

disseminating successful methods to donor centers. Options that might be used to reach 

that goal include: 

Specifying a retention rate in its operating agreement with each donor center. 

Augmenting performance indicators to emphasize continuous improvement in donor 

centers’ performance over time. 

Enhancing donor education at initial recruitment. 

Emphasizing to donor centers the need for fill education of donors when 

contacting them for fust level followup testing. 

Working with HRSAto devise a strategy for improving publicity around the need 

for retention and donor maintenance. 

...

111 
COMMENTS ON THE DRAFT REPORT


HRSAand the Assistant Secretary for Health (ASH)provided comments on our draft report,


as did NMDP.


The HRSAand NMDPquestion why we compared changes at first level followup (DR


typing) and second level confkmatory (CT) testing, rather than at first attempt and


subsequent attempts to contact donors. We agree that it makes sense to think in terms of


first attempt at contact and subsequent attempts, as the NMDPand HRSAsuggest.


However, because NMDPreports data in terms of first level followup testing and


confirmatory testing, we continue to use those terms in our analysis. Nevertheless, we


have changed our recommendations to encourage overall retention, at both first and


subsequent contact attempts.


HRSAagrees with the substance of our recommendation that the contract should specify the


retention rate to be achieved, but the agency raises concerns that implementing these


recommendations will take longer than we recommended in our draft report. We agree


and have changed our recommendation to specify that the appropriate retention rate be


implemented through a contract modification, rather than prior to issuing the new


contract. We urge that these changes be implemented within the first year of the new


contract.


HRSAand NMDPsupport our recommendation to support demonstration projects that test


alternative strategies for retaining donors. We agree that such projects should contain an


evaluation component to assess the feasibility of these strategies for broader use. We also


urge that these projects pay attention to overcoming language barriers, as recommended


by ASH.


iv 
TABLE OF CONTENTS 

PAGE 

EXECUTIVE SUMMARY


INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1


FINDINGS


.Initial andconllrmatory testing rates . . . . . . . . . . . . . . . . . . . . . . . . . ...4


.Retentionrates among minority donors . . . . . . . . . . . . . . . . . . . . . . . . ...9


� Concerns about decline in retention at confknatorytesting . . . . . . . . . . . . . . 10


RECOMMENDATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13


COMMENTS ON T~D-REPORT . . . . . . . . . . . . . . . . . . . . . . ...15


APPENDICES


A: Changes indonor retention rates. . . . . . . . . . . . . . . . . . . . . . . . . . . .. A-l 

B: Textofcomments onthedraftrepofi . . . . . . . . . . . . . . . . . . . . . . . . . . .. B-l 

C: Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. C-1

INTRODUCTION 

PURPOSE: 

To assess the effectiveness of the Natioml Marrow Donor Program 

bone marrow transplants between unrelated volunteer individuals. 

BACKGROUND: 

Bone Marrow Transplantation 

in retaining donors for 

Bone marrow transplantation is a treatment for blood borne diseases such as leukemia 

lymphoma. About 16,000 people are diagnosed each year with fatal blood diseases.l 

and 

Many could benefit from a bone marrow transplant, a procedure in which the patient’s


diseased bone marrow is destroyed and marrow from a healthy donor is infused into the


patient’s blood stream. Bone marrow produces platelets, red blood cells, and white blood


cells, the agents of the body’s immune system. For a bone marrow transplant to be


successful, the patient’s and donor’s antigens must match as closely as possible. About


30 percent of the time the patient finds a sibling with matching antigens. In the other


70 percent of cases the patient must seek an unrelated donor.


Three pairs of blood cell proteins, known as the Human Leukocyte Antigen (HLA)-A,


-B and -DR, are important in determining whether a match will be successful. One antigen


in each pair is inherited from an individual’s mother, the other from the father. Because


there are numerous antigens at each HLA-A,-B, -DR locus, more than 600 million


combinations are theoretically possible.2


The National Marrow Donor Program 

The National Marrow Donor Program (NMDP)is a nonprofit organization based in 

Minneapolis, Minnesota. The NMDPoperates the congressiomlly authorized marrow 

donor registry under contract with the Health Resources and Services Administration 

(HRSA). The contract is funded at $40,471,000, from July 1994 through April 1997. 

The NMDPbegan operations in September 1987 as a non-profit organization funded 

through a contract from Office of Naval Research. The NMDPwas created through a 

cooperative effort of the American Association of Blood Banks, American Red Cross, and 

Council of Community Blood Centers. The NMDPbegan operations with 10 transplant 

centers, 49 donor centers and 8,000 donors listed on the registry. As bone marrow 

transplantation came to be seen as viable technique, the U.S. Navy recognized that it was 

inappropriate for the military to maintain a civilian registry. In 1989, responsibility for 

the contract was transferred to the National Heart, Lung, and Blood Institute in the 

National Institutes of Health. Contract oversight for the NMDPwas again transferred in 

1994, this time to HRSAin recognition that NMDPwas a service delivery program, rather 

than a basic research initiative. 

1 
The major functions of the registry are to: (1) “establish a system for finding marrow 

donors suitably matched to unrelated recipients for bone marrow transplantation;” (2) 

“recruit potential donors;” and (3) “increase the representation of individuals from racial 

and ethnic minority groups . . . in order to enable an individual in a minority group, to 

the extent practicable, to have a comparable chance of finding a suitable unrelated donor 

as would an individual not in a minority group. ” In addition, the statute calls for a system 

of patient advocacy, support studies and demonstration projects, and the collection and 

dissemination of data concerning bone marrow transplantation and collection.3 

The NMDPaccredits donor centers that recruit volunteers to join the registry. As of 

October 1995, the registry contained almost 1.5 million donors in 97 domestic donor 

centers and an additioml 450,000 donors from 6 foreign centers. Eighty-one of the 

domestic centers are blood centers, either Red Cross-affiliated or part of community blood 

centers; 13 centers are hospital departments, and 3 are free-standing centers. Six of the 

domestic centers have more than 50,000 donors on their list; another 35 centers have 

between 10,000 and 50,000 donors each. The remaining 56 centers have fewer than 

10,000 donors. 

The Process of Finding a Donor 

Finding a donor for bone marrow transplantation involves many steps. Essentially, these 

steps can be viewed as two basic processes. One is the ongoing process of recruiting and 

maintaining a pool of potential donors that can be called upon to donate bone marrow. 

The second process occurs when a patient initiates a search for an unrelated donor from 

within that pool of potential donors. 

Potential donors register with the NMDPthrough donor centers or recruitment groups. At 

registration, all donors are typed for their HLA-Aand -B antigens.4 Because of the high 

costs associated with their typing and the infrequency with which potential donors are 

actually called upon to donate, the third pair of antigens, the HLA-DRantigens, 

traditionally have not been typed until a later stage at the request of a patient needing a 

transplant.5 To protect donors’ privacy, information about their HLAtype and other 

demographic and medical information is stored in the NMDP’Scentral computer under a 

coded system. Only the donor center knows the potential donor’s identity. 

Any physician can initiate a preliminary search on behalf of a patient at no charge. The 

preliminary search compares that patient’s HLAantigens to the antigens of donors listed in 

the registry. The NMDPfaxes summary information about the number of potential donors 

in various match-grade categories to the physician within 24 hours of receiving the 

request. A request for further typing of particular donors (a formal search) must be made 

through an NMDP-accredited transplant center. The NMDPgenerates a complete list of 

each potential donor in order of the best available match. 

The patient’s physician at the transplant center selects potential donors from the formal 

search report for further compatibility typing. The physician faxes these requests back to 

the NMDPcoordinating center, which notifies the appropriate donor center that one of its 

2

donors has been selected. Thedonor center contacts that donor for first level followup 

testing (DR) to type the donor’s HLA-DRantigens. If these antigens match, the patient may 

be called for second level confkmatory testing (CT). 

Eventually, one donor may be identified as the best possible match for the patient. 

Assuming that this donor is still willing to donate marrow, further typing, testing, workup, and informed consent take place. b That donor will go to a collection center, where 

marrow is collected in a surgical procedure. The marrow is then hand delivered to the 

transplant center where it is infused into the patient’s blood system. 

Some potential donors, however, do not proceed to followup testing at DR or CT, even if 

they are a potential match. Yet this is a critical point at which the success of the registry 

and of individual donor centers needs to be assessed. Their effectiveness in finding 

donors at these two points directly impacts the success of the program. We use the term 

retention rate to refer to donor centers’ success in keeping donors when they are called for 

followup testing. 

SCOPE and METHODOLOGY 

This report addresses the domestic donor centers only. The report is one of four 

companion reports addressing the National Marrow Donor Program. The other three 

reports are: National Marrow Donor Program: Progress in Minority Recruitment (OEI01-95-00120); National Marrow Donor Program: Geographic Overlap Among Donor 

Centers (OEI-01-95-00122); and National Marrow Donor Program: Financing Donor 

Centers (OEI-01-95-00123). 

This report utilizes three primary data sources: 

- 1) The NMDP’Saggregate statistical data on donor retention at DR typing and CT testing, 

broken down by donor center. We examined data at the following intervals: two 

12-month periods (October 1, 1992 to September 30, 1993 and April 1, 1993 through 

March 31, 1994) and three 6-month periods (April 1, 1994 through September 30, 1994; 

October 1, 1994 through March 31, 1995; and April 1, 1995 through September 30, 1995). 

2)	 A mail survey of the 97 domestic donor centers. We received 88 responses, a 

response rate of 91 percent. 

3) Site visits to donor centers in California, Massachusetts, Minnesota, New Jersey, 

North Carolina, and South Carolina. 

We conducted this study in accordance with the Quali~ Stanabrds for Inspections issued 

by the President’s Council on Integrily and Efficiency. 

3

FINDINGS 

~E OVERALLDONORRETENTIONRATEI-IASREMAINEDABOUTTHE SAMEOVERTHE 

PAST3 YEARS. WHILE THE RETENTIONRATEHASIMPROVEDFOR FIRSTLEVEL 

FOLLOWUPTESTING(DR TESTING),IT HASDECLINEDFORSECONDLEVEL 

CONFIRMATORYTESTING. 

Figure 1 depicts the trend in donor retention at DR and CT testing at intervals between 

September 1993 and September 1995. 

FIGURE 1 

86% Trends in Donor Retention at DR and CT 

September1993- September,1995 

84% 

82%1 Legend 

82% 

80% 

March1994 MarctI1995 

Se@ 993 seA35 serJ1935 

Source: NMDP,“RegistryStatistics” Analysisby OIG/OEI 

The NMDPidentifies four reasons that an individual may not come forward for further 

@Stkgj at either DR or CT: 

- Unable to contact. The donor center was umble to contact the donor. For 

example, the donor may have moved and left no forwarding address. 

- Not Interested. The donor no longer wishes to be considered as a marrow 

donor. 

- Medical deferment. Because donation requires a surgical procedure, donors with 

certain medical conditions are disqualified. 

4 
Temporarily unavailable. The donor is interested and medically appropriate, but 

his or her schedule is incompatible with the required time frame. For 

example, the donor may be traveling outside the country, or may be umble 

to take time off from work to come to the donor center for testing. 

The NMDPremoves donors who are classified as unable to contact or not interested from 

the active registry; they will no longer appear as a potential match in the fiture. In some 

cases, donors with medical deferments would be removed from the list (e.g., a permanent 

condition that renders the person inappropriate for donation), although in other cases 

(e.g., pregnancy) the donor might appear for future matches. Those who are temporarily 

unavailable remain on the list. 

Donor centers and NMDPhave put substantial effort into improving how they maintain 

their donor lists. Donor centers use three strategies to help keep their lists up to date: 

Annual Newsletter 

Eighty-three of 86 centers responding to our survey told us that they use the NMDP 

newsletter to update their lists, while 13 of 84 centers told us that they use their own 

newsletter, either independently or in conjunction with the NMDPnewsletter. Fifty-one 

centers rated the newsletter as their most successful strategy for updating donor lists. The 

NMDPworks with an independent mailing house to send an annual newsletter to all 

donors. The newsletters use the donor centers’ return addresses, rather than the NMDP’S. 

When newsletters are returned as undeliverable, centers flag those donors. At that point 

these centers try to contact donors using the contact list that the donor provided when 

signing up as a donor. Some centers put substantial effort into this activity as a way of 

updating their lists; other centers we spoke with, however, believe that it is more cost 

effective to put their resources into tracking down donors once they have been identified 

as potential matches, rather than merely keeping lists up to date. 

Donor Identification Cards 

In our survey, 69 of 86 centers reported that they give donors a donor identification card 

prepared by NMDP,while 13 centers issue their own donor identification card. Seven 

centers rated the donor identification card as the most successful strategy for updating 

donor lists. The donor identification card serves as an ongoing reminder of the 

individual’s participation in the program. It also encourages donors to call their center 

with a change of address whenever they move. 

Tram Union Credit Service 

Tram Union, a computerized reporting service, has been available to donor centers for 

over 2 years. Three centers rated this as the most effective strategy for updating their 

lists. The NMDPencourages donor centers to use this service, which we were told cost 

$1.25 per search. The donor center logs into a computer system, enters the donor’s last 

5

known address or social security number, and the system tracks that person through credit 

card or other activities.7 

Donor centers vary in the approaches they take to finding donors and the priority they 

give to different methods. One large donor center told us that its first step is to try to 

contact the donor by phone; if that approach fails, the center sends a letter to the last 

address, followed by a followup letter if no response is received. Finally, they turn to 

Trans Union. Another large donor center we met with told us that it first turns to Tram 

Union for each DR request that comes in. 

�	 The donor retention rate at DR testing improved to 73 percent for the year ending 

September 1995, up from 66 percent for the year ending September 1993. 

The NMDPprocessed 36,012 patient-directed requests for DRtesting in the year ending in 

September 1995, down from 38,891 in the period two years earlier. (Appendix A 

provides detailed data on requests made during these time periods.) 

Donor centers’ greatest improvement was in the unable to contact category. This 

category accounts for almost half of donors who are lost. Donor centers categorized 

12 percent of DR requests as unable to contact during the period ending in September 

1995, down from 17 percent in the period 2 years earlier. 

The other three categories remained about the same over this period. Temporarily 

unavailable improved slightly, from 9 percent to 7 percent of DR requests. Those in the 

medically deferred category increased from 2 percent to 3 percent, and those who were 

not interested continued at about 6 percent. 

We analyzed data for 93 donor centers that operated during this entire period. As Table 1 

shows, 62 centers retained a higher percentage of donors at DR request in the year ending 

September 30, 1995 over the period two years earlier. In 31 centers the retention rate 

was lower. 

II 1995Rateas a Percentof 1993Rate 

120%- 140% 

110%- 120% 

100%- 110% 

90 %- 100% 

80%-90% 

I Numberof Centers II 

5 

I 

16 I 

41 

I 

28 

I 

3 

Source:NMDP,“RegistryStatistics,October1993”and 

“RetzistrvStatistics.October1995” Analysisbv OIG/OEI 

6

F	 For the 6 months ending September 30, 1995 donor centers’ success in 

finding donors for DR testing ranged from 48 percent to 100 percent, with a 

median of 82 percent. 

�	 For that 6-month period, 18 of 97 centers retained at least 90 percent of 

those sought for testing; 8 centers retained less than 60 percent. 

We examined in detail NMDP’Sdata on retention at DR for requests resolved in the six 

month period between April 1 and September 30, 1995. During that period, donor 

centers received 17,781 requests for DR typing and filled 12,951 of them (73 percent). It 

is important to recognize that requests for DR testing are highly skewed among a few 

centers. Thirteen of the 97 centers received more than 50 percent of the total requests for 

DR typing and accounted for 48 percent of all donors that were retained during thk 

6-month period. 

As table 2 shows, the percentage of donors retained at DR is inversely correlated with the 

size of the donor center, as measured in the number of DR requests received. The smaller 

donor centers tend to retain a higher proportion of their donors than do the large centers. 

However, there is substantial variation within each size group, and we were unable to fmd 

a definitive explanation for these differences. One possible explamtion is that some large 

centers operate in large geographic areas, where distance may exacerbate problems of 

actually getting donors to come in for testing. 

Other large centers operate in urban areas, where a relatively mobile population may 

make it difficult to keep in contact with donors. Yet a third explanation may simply be 

that the differences relate to the scale of operations. For example, a donor center with 75 

DR requests in a six-month period receives about 3 requests per week; on the other hand, 

a center with 450 requests in that period gets 2 to 3 requests per day. 

7

.	 Thedonor retention rate atcTtwting dwlined to75percent for the year 

ending September 1995, down from 81 percent for the year ending September 

1993, in COIItHMt tO hIIl)rOVf3111eIIh in retention at DR. 

Themmpprocessed9,454cTr equestsfor the year ending September 1995, a37 percent


increase over the 6,901 requests in the year ending September 1993. (Appendix A


provides detailed data on requests made during these time periods.)


Donor centers’ greatest difficul~h retitig donors wash tieunable to contact


category, which accounts for about one-third of the donors lost at CT. Donor centers


categorized 7 percent of CT requests as unable to contact during the period ending in


September 1995, up from 4 percent in the earlier period. The other 3 categories increased


slightly over this period: Temporarily unavai[ab[e grew from 8 percent to 9 percent,


medically deferred from 3 percent to 4 percent, and those who were not interested from


4 percent to 5 percent.


We analyzed data for 92 donor centers that were in operation during this entire period to


identi& how many had improved their performance (Table 3). In contrast to retention at


DR, only 29 centers (32 percent) retained a higher percentage of donors at CT request in


the year ending September 30, 1995 over the period two years earlier; in 63 centers the


retention rate decreased. 

II1995Rateas a Percentof 1993Rate 

II120%- 130% 

110%- 120% 

100%- 110’% 

90 %- 100% 

80 %-90% 

lessthan80 % 

/ Numberof Centers 

14 

1 

6 

I 

1 19

I 

29 

I 

I 24 

10 

Source:NMDP,“RegistryStatistics,October1993”and 

“Re~istrvStatistics.October1995” Analvsisby OIG/OEI 

F	 For the 6 months ending September 30, 1995 donor centers’ success in 

retaining donors for CTtesting rangedfiom 43 percent to 100 percent, with 

a median of 80 percent. 

b	 Of 5,155 CT requests in that 6-month period, 1,279 (25 percent) donors did 

not come forward for testing. 

8

k	 Twenty of 97 centers retained more than 90 percent of donors; 7 centers 

retained less than 60 percent. 

Table 4 presents data on retention at CT for requests resolved for the 6-month period 

between April 1 and September 30, 1995. As with DR retention, the smaller donor 

centers tended to have higher retention rates. Eleven of the 97 centers received more than 

50 percent of the requests for CT tests and provided 50 percent of the donors that were 

retained during this period. 

~TENTION RATES AMONG DONORS FROM RACIAL AND ETHNIC MINORITY GROUPS LAG 

BEHIND THOSE FOR WI-HTES. 

Although recruitment of minority donors has increased more rapidly than among white 

donors in recent years, a lower proportion of donors from minority groups are coming 

forward for followup testing than are whites. 

At first level followup testing (DR testing) retention rate for minorip donors 

improved to 66 percent for the year ending September 1995, up from 55 percent for 

the year ending September 1993. In comparison the retention rate among white 

donors grew j70m 71 percent to 76 percent. 

However, retention of minority donors at second level followup testing (n testing) 

declined to 60 percent for the year ending September 1995, down from 67percent 

for the year ending September 1993, while it fellfiom 83 to 81 percent among 

white donors. 

9

Table 5 presents data on retention rates specifically for minority donors at first level 

followup (DR testing) and second level followup (CT testing). 

EthnicandRacialGroup 

White 

Hispanic 

Black 

Asian/PacificIslander 

AmericanIndian/Alaska 

Native 

Totals: 

DR Testing 

Ott 1, 1992- Ott 1, 1994-

Sept30, 1993 Sept30, 1995 

71 ‘% 76 % 

56 % 63 % 

55 % 68 % 

47 % 62 % 

71 % 74 % 

66 % 72 % 

CTTesting 

Ott 1, 1992- Oct 1, 1994-

Sept30, 1993 Sept30, 1995 

83 % 81 % 

70 % 62 % 

70 % 59 % 

59 % 51 % 

69 % 76 % 

81 % 76 % 

Source:NMDPRegistryStatistics Analysisby OIG/OEI

EVEN THOUGHTHE DECREASEIN DONORRETENTIONRATESAT CO~RMATORY 

TESTINGIS SMALL,m STILLRAISESSOMECONCERNS. 

The NMDPand donor centers have gained substantial experience over the past several 

years. They have improved registration practices, increased donor education, adopted 

new technologies for locating donors, and developed continuous process improvement 

indicators. Consequently, we expected ongoing improvement in retention at all stages of 

the process, but we found that this was not the case at the CT stage. Our review identified 

three factors that may explain this trend: 

. Luck of direct donor involvement and commitment at the earlier DR stage. 

Donors may be less likely to feel a direct commitment at DR testing for two reasons.


First, increasing numbers of donors already have been DR-typed. Some donors have been


typed through an earlier patient-directed request. Other donors were DR-typed when they


first joined the registry. Special fimding has been earmarked to DR-type all new minority


donors, and some white donors, at registration. This “front end” typing may provide one


important explanation for the greater decrease in retention at CT testing for minority


donors.


Second, the NMDPhas recently established two central repositories. At initial registration,


the donor center draws an extra sample of each donor’s blood, which the NMDPstores in a


repository. The donor’s blood is not DR-typed at registration, but when one of these


10 
donors is identified as a potential match, the sample is withdrawn from the repository and 

DR-tested. 

Either situation obviates the need for the donor to physically go to the donor center at this 

stage. Instead, the center contacts the individual by phone to gain formal permission and 

to prepare the donor for the possibility that additional testing and donation are possible. 

These donors give their verbal permission at that time.8 However, they do not need to 

make a direct commitment in time, inconvenience, or additional blood donation until the 

CT stage. The director of one donor center we spoke with characterized this difference as 

“active” versus “passive” commitment. 

� Potential conflict between a rapidly growing re~”stry and donor education. 

The NMDP has experienced great success in increasing the size of the registry list. In an 

effort to expand their lists, some centers may not be doing an effective job of fully 

educating donors at initial recruitment about what will be required of them in the event of 

a match. The director of one donor center summarized this concern when she told us 

that, “If people are to come for later testing and donation, it depends on how well we do 

our job selling at the front end. We need to emphasize timing and commitment at every 

step. ” 

Organizing registration drives is a major component of donor center work. These drives 

frequently focus on an individual patient in need of a transplant. On our site visits we 

asked donor centers “What makes a ‘good’ donor?” Donor centers told us that signs of a 

good donor include someone who reads all available material, asks serious questions, and 

takes time to reach a decision to join the registry. To help donors reach a decision, staff 

at donor centers cited extensive patient education at initial registration as critical. Donor 

centers told us that an important part of this educatioml process is ensuring that those who 

join the registry understand that they are not joining just for a patient who is the focus of 

a particular drive, but for anyone who may eventually need a transplant. 

We also heard from some centers that college students are difficult to find at later stages, 

because they move often in their early years out of school. Several centers, however, also 

told us that college students were a primary target of their recruitment efforts. 

� No awareness of problems in CT retention rate. 

Some donor centers may fail to recognize the problems we identified in retaining donors 

at CT. Even though donor retention is declining at this stage, donor centers responding to 

our survey cited obstacles to retention less frequently at CT than they did at DR. 

Our survey asked donor centers about obstacles to DR and CT testing. As Figure 2 shows, 

with one exception (donor distance from center, where 11 percent cited it as a problem at 

CT versus 8 percent at DR), obstacles at DR typing were cited by about twice as many 

donor centers as they were at CT testing. 

11

FIGURE 2


Source: OIG/OEI survey of domestic donor centers, August, 1995 n= 88 

We raise concerns about the consequences of thedeclining m retention rate for two 

important reasons: 

. Pa.ti”entexpectti”ons arehighti CT. 

When arequest for CT testing occurs, apatient awaiting atransplant knows tiata 

potential donor match has been identified. This preliminary match no doubt raises the 

hopes of the patient; failing to retain donors at this stage means that the patient’s hopes 

for a transplant may have been raised unrealistically, only to be dashed because the 

potential donor fails to come forward. 

. Losing donors at CT is costly to patients awaiting a transpkmt. 

The 55 NMDp-accredited transplant hospitals bill patients a mean charge of $264 (range = 

$200-$600) for each patient-directed DR test that is performed on potential donors. If 

those donors fail to come forward at CT, the patient still must pay for the DR testing that 

was done. 

12

RECOMMENDATIONS 

The National Marrow Donor Program (NMDP)has come a long way since its inception 

with a registry of 8,000 volunteer marrow donors in 1987. Today, almost 2 million 

donors have joined the registry, and NMDPhas facilitated over 4,000 bone marrow 

transplants between unrelated individuals. In this report we raise concerns about the level 

of retention of volunteer donors on the registry list: Despite experience in recruitment 

and education, improvements in technology, and the implementation of continuous process 

improvement measures, the overall rate of donor retention has not improved. 

We developed our recommendations to encourage improvement in donor retention. We 

believe that improving this aspect of the program will require a partnership approach 

between HRSAand NMDP,and between NMDPand its donor centers. Consequently, we 

direct our recommendations to both HRSA,as contractor for the registry, and to NMDP,as 

the holder of that contract. 

THE HEALTH RESOURCES AND SERVICES ADMINISTRATION SHOULD SPECIFY, EITHER 

UPON ISSUING THE FORTHCOMING CONTRACT OR THROUGH A FUTURE MODIFICATION 

OF THAT CONTRACI’, THE OVERALL RETENTION RATE TO BE ACHIEVED BY THE 

REGISTRY. To develop the appropriate retention rate, HRSAshould work with NMDPand 

the donor centers to develop methods for improving overall retention and a plan to 

implement these methods. The implementation plan should include a description of 

actions to be taken should the registry or the donor centers fail to meet the target rates. 

We urge mw to specify target retention rates within the first year of the new contract. 

We also encourage HRSAto assure that these methods encourage retention of donors from 

racial and ethnic minority groups. 

The current HRSAcontract with NMDPspecifies goals for overall recruitment of donors and 

minority donors, and for the number of transplants to be performed in each contract year. 

However, the contract does not contain goals for donor retention, the key middle step in 

that process. We urge that fiture contracts specify retention rates for both first attempts 

and subsequent attempts to contact donors. We believe that HRSAcan draw on NMDP’S 

expertise to develop minimum retention levels that can be realistically achieved. 

TO THE EXTENT THAT RESOURCES ARE AVAILABLE, THE HEALTH RESOURCES AND 

SERVICES ADMINKWRATION, WORKING WITH THE NATIONAL MARROW DONOR 

PROGRAM, SHOULD SUPPORT DEMONSTRATION PROJECTS THAT TEST ALTERNATIVE 

STRATEGIES FOR RETAINING DONORS. We urge that particular attention be paid to 

demonstrations that seek to increase the retention rate among donors from racial and 

ethnic minority groups, including efforts to overcome language barriers that may suppress 

retention. We believe that any such demonstration projects should contain an evaluation 

component to assess the feasibility of these strategies for broader use. 

The NMDPhas increased substantially the number and proportion of minority donors on 

the registry. Donors from these groups, however, show lower retention rates than do 

13 
white donors. In addition, because an increased number of HLAcombinations occur 

among minority groups, many minority patients face serious problems in fkding a 

matching donor. These difficulties make strategies for improving retention rates among 

minority donors a priority. 

NMDPSHOULDWORKWITHDONORCENTERSTO DEVELOPANDIMPLEMENTMETHODS 

FOR IMPROVING DONOR RETENTION AT BOTH THE FIRST ATTEMPT AND SUBSEQUENT 

ATTEMPTSTo CONTACT DONORS. we hope that imprOving retention among donors from 

racial and ethnic minority groups will be a focus of these efforts. We encourage NMDP 

also to put in place plans for evaluating the success of these methods and a strategy for 

dissemimting successful methods to donor centers. We offer a number of options that the 

NMDPmight use, but we also welcome additioml ideas from that organization on how to 

achieve this goal. Possible options might include: 

� Spec@ing a retention rate in its operating agreement with each donor center. The 

NMDPoperating agreement whh each donor center does not specify levels of 

achievement for retention at ehher DRtyping or CT testing. Just as we urge HRSA 

to establish an overall goal for retention, we believe that defining minimum 

expectations would provide an incentive to the donor centers. 

� Augmenting pe~ormance indicators to emphasize continuous improvement over 

time. The NMDPhas in place performance indicators for each donor center that 

address retention at DR and CT. Each center receives a monthly report on hs own 

performance on these indicators and a summary of the network’s overall 

performance. Including monthly trend information might better inform donor 

centers about their progress over time and encourage ongoing improvement. 

� Enhancing donor education at initial recruitment. Educating donors at recruitment 

is the first step in the marrow donation process. This education should stress the 

importance of timing and commitment if the donor is called for further testing. 

� Emphasizing to donor centers the need to jidly educate donors when contacting 

them for DR testing. In the future, an increasing proportion of donors on the 

registry will have their blood stored in the repository, or will have been DR typed 

already. This trend will exacerbate the problem of passive commitment identified 

in this report. Rather than merely obtaining a donor’s permission through a phone 

call, more complete education about commitment and expectations might alleviate 

this problem. The NMDPcould develop a script or checklist of points that donor 

centers should cover when contacting donors at request for DR typing. 

� Working with HRSA to devise a strategy for improving publicity around the need for 

retention and donor maintenance, as well as continuing current eflorts on the need 

for recruiting donors. Much publicity, both local and national, has been given to 

encouraging people to join the NMDP. Joining the registry, however, is only one 

step in the process. Publicity that also emphasizes the importance of commitment 

for those who are actually called as potential donors could help improve retention. 

14 
COMMENTS ON THE DRAFT REPORT 

We sought comments on the draft report from the Health Resources and Services 

Administration (HRSA),the Assistant Secretary for Planning and Evaluation (ASPE),and 

the Assistant Secretary for Health (ASH). In addition, HRSArequested and received 

comments on the report from the National Marrow Donor Program (NMDP). 

Use of CT and DR vs. Overall Retention 

The HRSAand NMDPquestion why we compared changes at first level followup (DR 

typing) and second level conilrmatory (CT) testing, rather than at first attempt and 

subsequent attempts to contact donors. our analysis used DR typing and CT testing 

because the NMDPand donor centers use these terms. We continue to use that framework 

in this final report. We agree with HRSAand NMDPthat it makes conceptual sense for the 

program to move toward reporting data in terms of first attempt at donor contact and 

subsequent attempts. Given developments in practice--e. g., most donors now are typed 

initially at registration, blood samples are maintained in the NMDPrepository, and DNA 

testing is becoming more common--this approach appears to be more appropriate. 

One step that could further this reconceptualization about retention rates is for NMDPand 

donor centers to use that terminology. For example, the NMDP’SCPI indicators continue 

to describe events at DR and CT testing, and data are reported using that framework. 

Nevertheless, we have changed our recommendations to encourage overall retention, at 

both first and subsequent contact attempts. We are concerned, however, that merely 

reclassifying how retention is described begs the larger and more critical issue that we 

raised in our draft report and continue to raise in this version: Despite substantial 

experience, which includes improved registration practices, increased donor education, use 

of new technologies, and the development of continuous process improvement indicators, 

the overall retention rate simply is not improving. 

We are pleased to learn that NMDPhas begun to support research to understand why 

donors elect not to participate when called for further testing. We hope that this research 

will lead to better retention rates and improve the odds of finding a donor for 

transplantation when needed. 

Specification of retention rate 

HRSAagrees with the substance of our recommendation that the contract should specify the 

retentio-n rate to be achieved, but the agency raises concerns that implementing these 

recommendations will take longer than we recommended in our draft report. (In that draft 

report, we had proposed implementation prior to awarding a future contract for the 

registry, which HRSAnotes should take place in the Spring of 1997.) We recognize that 

these are complicated subject areas; however, we do not believe that a complicated issue 

should give HRSAor NMDPlatitude to take any longer than necessary to achieve them. 

Accordingly, we have changed our recommendation to specify the appropriate retention 

15 
rate through a contract modification, rather than prior to issuing the new contract. We 

urge that these changes be implemented within the first year of the new contract. We 

believe that such a time frame is adequate to achieve these changes. 

We are concerned that an open-ended time frame could result in unnecessary delays. We 

wish to state clearly that developing, implementing, and enforcing performance standards 

and efficiency measures are important, and need to be accomplished as quickly as 

possible. 

Developing methods for improved retention 

HRSAsupports this recommendation, but urges us to stress overall retention more than the 

DR and CT rates. We have modified the recommendation to reflect this change. We also 

urge the NMDPto pay attention to donors from racial and ethnic minority groups. We 

encourage NMDPalso to put in place plans for evaluating the success of these methods, as 

was suggested by HRSA. 

Demonstration projects 

HRSA supports this recommendation. We added language to our recommendation about 

fimncing demonstration projects to encourage demonstrations that pay attention to 

overcoming language barriers, as recommended by the Assistant Secretary for Health. 

We also urge the demonstrations to contain an evaluative component to assess the broader 

feasibility of these demonstrations tested. 

Other Comments 

We have changed language in several places in the report as recommended by the Office 

of the Assistant Secretary for Health. ASPEhad no comments on the report. 

16

APPENDIX A 

CHANGES IN DONOR RETENTION RATES 

Changes in DR Retention Rates


Years ending Sept 1995 vs. Sept 1993


DR Unable to Not Medically Temporarily 

Requests Contact Interested Deferred Unavailable 

October, 1994- 36,012 4,251 2,186 940 2,550 

September, 1995 (11.8%) (6.1%) (2.6%) (7.1%) 

October, 1992- 38,891 6,519 2,321 834 3,436 

September, 1993 (16.8%) (6.0%) (2.1%) (8.8%) 

CT Unable to Not Medically Temporarily 

Requests Contact Interested Deferred Unavailable 

October, 1994- 9,454 661 434 357 835 

September, 1995 (7.0%) (4.6%) (3.8%) (8.8%) 

October, 1992- 6,901 278 248 227 578 

September, 1993 (4.0%) (3.6%) (3.3%) (8.4%) 

1

TEXT OF COMMENTS ON THE DRAFT REPORT 

Health Resources and Services Administration . . . . . . . . . . . . . . . . . . . . . . . . B-2 

Assistant Secretary for Heal& . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. B-6 

National Marrow Donor Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. B-8 

Note: The Health Resources and Services Administration, the Assistant Secretary for 

Health, and the National Marrow Donor Program provide combined comments on four 

draft reports that examined the National Marrow Donor program. This appendix includes 

only those portions of their comments that are relevant to the report entitled “National 

Marrow Donor Program: Effectiveness in Retaining Donors. ” 

B-1

Heakb Resources and 

7CT n 3 ;% Servicas Administration 

Rockville MD 20857 

TO: Inspector General, DHHS 

FROll: Deputy Administrator 

SUBJECT :	 Office of Inspector General (OIG) Draft Repo”rts, lfNat~On~~ Marrow Donor pro~arn (NMDP) s 

1) Financing Donor Centers OE1-01-95-00123 

2) Progress in Minority Recruitment 0EI-01-95-00120 

3) Geographic Overlap Among Donor Centers 

OEI-01-95-00122 

4) Effectiveness in Retaining Donors 0EI-01-95-00121ff “­

.~ttached is HRSA’S response to your memorandum requesting 

comments on the four subject draft reports. 

we appreciate the OIG conducting the review, “Bone Marrow Program 

Inspection.” The draft reports were forwarded to the NMDP for 

comment. Their comments have been incorporated into our


response. HRSA and NMDP will be performing further analysis and


examination regarding some issues, such as restructuring of donor


centers, implementation of performance indicators! and


specification of retention races, before specific changes are 

made. HRSA plans to utilize the findings and recommendations 

contained in these reports as an integral part of the development 

of the contract. 

Questions may be referred to Dsirdre Walsh on x35181.
 .


k 

+%J hn D. Maho ,y ~ 

Attachment


B-2

OIG Reuort: Effectiveness in Retaininq Donors 0EX-01-95-00121 

GENERAL COMMENTS 

NMDP commented that the number of donors who are DR typed at 

enrollment has increased. The first attempt to COntaCt donors is 

more often at the confirmatory testing stage rather than at the 

DR stage. NMDP, therefore, recommends that retention needs to be 

evaluated based on the ‘first attempt” and “subsequent attempts” 

to contact donors, rather than separating DR and CT retention. 

OIG RECOMMENDATION: 

HRSA should specify, in any future contract fOr operating the 

regi.stry~ the retention rate to be achieved. We urge that future 

contracts specify retention levels at both the IIR and CT stages. 

NMDP should work with donor centers to develop methods for


improving retention at CT testing.


HRSA RESPONSE


HRSA concurs with the recommendation that HRSA specify the 

retention rate to be achieved, but does not concur that HRSA 

should specify the retention rate in its next contract for 

operating the registry. There is insufficient time, prior to the 

next contract award, to develop a retention rate that is


realistic and operational.


A first step is for the contractor, in consultation with HRSA, to


develop target retention rates and methods for implementing them.


Establishing Continuous Process Improvement (CPI) indicators for


donor retention should include an adequate understanding of why


volunteers are not retained and effective methods for improving


retention. NMDP recommends that retention needs to be evaluated


based on the ‘first attempt” and “subsequent attempts” t-ocontact


donors, rather than separating DR and CT retention, particularly 

because donors are increasingly DR typed at recruitment and 

contact for CT may be the first attempt to contact donors for 

follow-up testing. Previously, donors were contacted first for 

DR typing and subsequently for CT.


HRSA expects that the next contract will require a report on 

effective methods of improving retention and a plan for 

implementing continuous process improvement measures for donor 

retention. The implementation plan will include disciplinary 

actions for donor centers and recruitment groups that do not meet


the CPI goals.


B-3

HRSA agrees that there is an urgent need for a thorough analysis 

of donor retention. As more donors are DR typed at recruitment, 

retention at CT reflects overall retention (DR and CT) . HRSA


suggests the following modification:


HRSA should work with the contractor and the donor centers 

to develop methods for improving overall retention, an 

implementation plan, and disciplinary actions. Methods for 

improving retention should take into account retention of 

minority donors as well as cost issues associated with 

donation. 

This recommendation should precede the recommendation about


demonstration projects to emphasize the importance of overall


retention of donors at both the DR and CT stages.


OIG RECOMMENDATION 

To the extent that resources are available, HRSA, working with 

the NMDP, should support demonstration projects that test 

alternative strategies for retaining donors. We urge that 

particular attention be paid to demonstrations that seek to 

increase the retention rate among donors from racial and ethnic 

minority groups. 

HRSA RESPONSE


HRSA agrees with this recommendation and specifically with the


recommendation that the approach to contacting donors for follow-


up testing be more standardized. Evaluating alternative


strategies for retaining donors and facilitating transplants


should be a first step. Identifying centers that do a


particularly good job at retaining donors, particularly minority


donors, and noting the strategies used by them would provide


valuable insights. HRSA supports the idea that HRSA work with


the NMDP to identify alternative strategies and evaluate their


feasibility for broader use.


OIG RECOMMENDATION: 

The National Marrow Donor Program should work with donor centers 

to develop methods for improving retention at confirmatory 

testing. 

HRSA RESPONSE


HRSA concurs with the recommendation, but agrees with NMDP that 

the overall retention rate is more important than the DR and CT 

rates given that more donors are being A, B, and DR typed at 

enrollment. Therefore, tracking retention at the first attempt 

B-4

and subsequent attempts to contact donors may be more meaningful 

than retention at DR and CT. 

The OIG Report suggested possible OptiOns for improving retention


at confirmatory testing. Some of these options, such as


specifying a retention rate in the oPeratin9 a9reement with each 

center, require consideration and development. In addition, 

development of strategies to improve retention, including donor 

education and publicity, is important but may not need to be 

specified.


Additional strategies, directed at facilitating the transplant


prccess %y improving retention, may be even more important but


more difficult to develop. Therefore, some IWntlOII of eValUatiIIq


as well as implementing strategies for maintaining contact with 

donors might be useful. 

B-5

DEPARTMENT OF HEALTH AND HUMAN SERVICES Office of the Secretary 

AuG 28 IW Assistant Secretary for Health 

Office of Public Health and Science 

General Washington O.C. 20201 TO: hspector


FROM: Assistant Secretary for Heaith 

SUBJECT: OIG Drafl Reports on the National Marrow Donor Program 

. 

Thank you fortheopportunity toreviewtheOffIce oftheinspector General’s Dratl Reports on

the National Marrow Donor Program. I am pleased that in generaI the reports show that much 

progress has been made. However, the reports also showed that there are additional areas where 

the ileparunent mustfocusits attention. Therecommendations contained inthese reportsare

important andshouldbeimplemented asquickly
aspossible.

Attached areseveral areas which 1 believe shouldbeaddressed inthereports. Thankyouforthe


opportunity to review these important reports. If you have any questions on the concerns raised, 

please calI Mr. Matthew Murguia of the Office of Minority Health at 301-443-9923. 

/7Lf7J-c”LPhiI1ip
 K Lee,M.D.


Attachment


B-6

OIG DRAFT KEXVK1 S ON


THE NATIONAL MARROW DONOR PROGRAM


� REPORT: Progress in Minority Recruitment 

��	 TIWuse of the term “Caucmim” ~d “wtites” are interckgeably used throughout the 

report. OIG may consider using the OMB Directive 15 classification for describing the 

various raciaf/ethnic groups, which are “white, black, AsiWacific Islahder, American 

Indian/Alaska Native. and Hispanic,” 

��	 There should be some discussion as to why the HRSA contract does not speci& annual 

recruitment goais for Native Americans @age 6). 

��	 There snouid be some discussion as to why whites constitute 83% of preliminary 

searches. but account for 91‘%o of transplants (Table 3. page 10). 

��	 The discussion of mistrust by Asims on page 10 is contradicted by the discussion on page 

5 which indicates that Asians are over represented in the donor pool. 

�� On page 11. is CUM.WIJcompetency training, including biiingu.ai capability, inciucied in 

the HRSA contract? If not, this avenue should be explored as a means to find bilingual 

staffi especially those knowledgeable about medical terms. 

��	 On page 1I. OIG should consider a recommendation which would require a pre-test with 

a sample of the target population of educational materials prior to their use. 

� REPORT: Effectiveness in Retaining Donors 

�� The use of the terms “Caucasian”’ and “whites” are interchangeably used throughout the 

report. OIG may consider using the OM~ Directive 15 classification for describing the 

various racia.i/ethnic groups, which are “white, biack. Asian/Pacific islander. American 

IndiadA1aska Native. and Hispanic.” 

�� Figure 2. page 12. shows that 10- 17 percent of donor centers indicate that language 

bmiers present an obstacle to search and workup. However, this issue does not appear to 

be discussed. nor are any recommendations to address this area contained in the repott. 

Given [helargepercentage of centers reporting this as a problem. and the stated fact that 

it is more dificuit to maintain minoritydonors, an examination of this issue would be 

appropriate. 

B-7

Wtmnnl Marrow 

Donor PrugriIrn 

TWloual Coonlinatinc Ccntur 

.MXI Brnadwuy SUCA N.E. 

Suirc XX) 

Mjnnqdis. ~ 5541~ 

612-627-5LW 

I-KIX)-5Zf+7N?J 

FAX: 61>627.W9 

bard ofDilwdcm 

Hcrbcn A. Perkinr.,M.D., Char 

Jmmdumk LeOlg, Vice CJunr 

clam Paclilh Andmvs 

Uichmd i+. Asler.M.D. 

~ufcncc D. Atlm, J.11 

Jn~h “f.BCJLM.D. 

% DUPOIMM.D., D..?C. 

Rogcr W. I?vnm. P?LD. 

f?anS. I+hcr. J.D.. Ph.D. 

Duvid B. F~hflm8ycr. J.I>. 

J. Cunynn &rdmt. J.D. 

JohnA. lLUMII. M. Il. 

+edcnck J. %um. M.. S.F-E-.M.B.A. 

. ~J~ M Hnrn+w. M. D.. MS. 

HR. Ja!lt. M.D. 

MWCyA Kcman M.D. 

susan LcitmMn.MD. 

~ichoks J. NeulMusci. J.D., M.S.M. 

%tcr 1- f%gc.M-U. 

Lmmtb A. (CAP) %rlier 

r=x Pccluum. M. D.. ph.DL[. GcrI. Fmk E. l%cmcn. Jr. 

Kobcrt K. RUSSM.D. 

EAV.trd P,%nt. M.D. 

Ihwd F. Stronc& Ml). 

J&m S. Thurnpson.M-O. mm w WMUS. M.D. 

SIenn N. WUIK. MD. 

Antmnctte K Yxxe.Y. M. O., M.P.H. 

Admtmi E. It. Zum’wnh.~r. 

GWw’S.l+ow&M. O..Ph.D.

Chkflzzmutlvc Ofil’ef 

~wim KmcritEa: 

R~rt C. Guvm. D.V.M. 

Admud E. R. Zumwdt. h. 

~u~ Gmwx Awacd: 

~c Hnnnmoic U. W. ‘“13il~Ymmg 

John A. Hamcn M.D. 

(:kck bnfunL MD. 

A mlldmmuw effofi of che 

4mcricnn Association 

Uf JNIxn.1J3ankl 

Amm-icml Rd CrO@ 

ct)oncil� of Commnfuty 

Blood CenUm 

With funding (rum 

HIxlth Rm_nmxs and SCfVICCS 

Admtmwntwn and 

Navai Mdcal Rcxmh tmd 

Mwciup-ment Com~d 

September
4,1996 

Judith Brasiow I 

, 

!	 Director, Division of Organ Transplantation 

Heaith Resources and Services Administration 1 Park Lawn Building I 5600 FiSkS Ianc - Room 729 ! Rockviile, MD 20857 

Dear Ms. Bradow: 

Thank you wry much for providing the National Marrow Donor 

Pmgra.m@ (NMDP) with an opportunity to review the draft reports of the 

Office of Inspector General (OIG), Depament of H~th and Human 

Services. ‘I”hedraft reports were sent to members of the Minority Af&irs, 

Membership and Process Improverncnt, Donor Recruitment and Executive 

Committees as well as the NMDP’s Network Evaluation Advisory Panel 

and seiected members of the staff. 

The comments received have been colIaredand a synthesis of the 

responses is presented bciow. The intent of the NMDP is not to criticize 

the ciratl reports,but rather to add information from a varietyof


respondents, ail of whom have been involvd with aspects of donor center 

operations and/or donorrmuitrnent.As you know theNMDP is WCU 

aiong in its own analysis of donor center functions, the findings of which 

should provide fiwtherusefulrecommendations. 

Following thesummaryofcommenlson eachdrafi report
we have. 

provided our own iist of recommendations for modification of the OIG 

document. 
13Tectiveness in Retaining Donors 

A ~u.rring theme throughout the comments an this section was how retention should 

be dcflncd and q-1~. ~ Conciwion of the dra~ report WaStit the situation was 

improving for “DR retentiou” but deteriorating for ‘CI’ retention.’! In fact,most


donorscontacted
atm = ~~ng w~c~ for ~C fit*. VCV fc~ DR typtigs 

lead to subsequent CT wing since DR ~ing only ~=ly proties a ma~h. Thus it is 

not .SU tising to scc ~~ tic ~~ ~d ~ m-non ~ ~ ~nverg~ ~ 75 z ~ fi@. 

of the Tau that both represent the fmt attempt to contact a donor. An alternative would 3 

be to evaiuate retention on the basis of “first attempt” versus “subsequent attempts. ” 

There were reservations CKPrcssedabout.the establishment of continuous p-s 

improvement indicators for donor mention. These reservations centered on two 

pnzmisca: 1) An -.~ti -~ding of why volunteen are not retaind; 2) An 

imprecision and over~p m @ ~~gofies (NI, T’lJ, etc.) used to describe donor status 

and a resultant concern LIULfacto= ove~ which donor centers have no control would be 

US~ to x-ate (mrnburse) them. To obrmn betrer information about the first premise, 

Galcn Swirzer, Ph.D. of the Umversuy of Pittsburgh is about to embark upon a study 

of the reasons mp do~fi el=t not to p=icipate wkn mllti for tlrther testing. 

The repofi recommendation for a more standa.rdkd approach (“script or checklist of 

poims”) m contacting donors for follow+p testing was thoughtobeberxficial.


An appropriate caveat in mrnpfi~g the abili~ of donor een!ers to retain donors was 

that of donor ~nkr age. CO~arrsoII of retendon rates for ‘old” ccntxxs (many 

volunteers ttawng been -Iti five or mom years ago) versus “young” c- are 

inherently inequitable. 

Itwas weilreco@zed thatmany of the ideas for improving donor retention were fikely 

to mrne witha s@.&ant cost.It was agreed unanimously that an increased sensitivi~ 

to donors and their concern on the part of donor center personnel was both desirabk 

and cost effedvc. 

Recommended Modifications to the DraR Report: 

�	 The improving DR retention and dctcrioradng CT retention is an artifact caused 

by the fact that Incm=hg proportions of quested donors have already been 

DR typed. we need tOcompare effectiveness at tit donor contact, whether for 

DR or CT. 

�	 Factors involved in donor retention are too complex for a simplistic comparison 

of retention rates. We a- that there is an urgent need for a thorough anaiysis 

of this probIcm, whxch we have already begun. 

B-9

We are ahe.ady embmked UPOncon~j~i?g tie effo~ be~ wi~ -se OIG ~ ~o~” ~r 

own detailed evaluation of cafi to recm~t donqrs and remeve them for donation is well under 

way. The effectsof geo~aphlc overl~ ~ be~ ev~wti by ourNeWork Evaluation 

Advisory Panel and by several committees. Minority recmitmcnt approaches and donor 

retention are areasof high conum, being admti by our Minor@ Affairs Comm.iti, the 

Donor RecruitrmxX Comrnittt%, and theMembership and Process Improvement Committee. 

These are aJl high priority iterns for our Board of Directors, which w’Nbe reviewing these 

documents at its regular meeting in several weeks. 

We hope that you find these comments helufd. . The NMDP thanks Youfor sharing these draft

reports and looks foxward to a continuing collaboration in irnprovi~- all aspects of–donor 

center and remitment group operations. 

Herbert A. Perkins. M.D. 

NMDP Board Chair 

. 

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APPENDIX C	

ENDNOTES	

1. National Marrow Donor Program, The Living Gijl of Life. 

2.	 Bone Marrow Transplants -A Book of Basics for Patients (reprtited by NYsEwET, mc. 

with permission from BMTnewsletter), chapter 4, pp. 35-36. 

3.42 U.S.C. $274k(b)(l)-(7) 

4.	 Grant money from the Office of Naval Research pays for minority donors to undergo 

initial HLA-DRtyping, which is a higher level of testing than most Caucasian donors would 

initially undergo. 

5. Ninety-five percent of new donor centers have blood samples sent to one of two NMDP 

repositories. When a potential donor is contacted for DR typing, the donor’s blood can be 

directly sent from the repository to a lab for testing. However, the donor must still be 

contacted for consent. 

6.	 In addition to the DR typing and additional confkrnatory testing, the donor center is 

responsible for ongoing donor mamgement. This can be a lengthy process, involving 

counseling, advocacy and other aspects of donor education. 

7.	 The accuracy of this system is unclear. During our research, a donor center performed 

a search using Tram Union for the two OEI interviewers. One OEI staff member, in his 

mid-40s and residing in the same home for 8 years, appeared accurately in the system. 

The second OE1 staff member, in her mid-20s, yielded much less reliable data. Using her 

social security number, Trans Union listed the university from which she graduated 5 

years earlier as her most current address, even though she had moved half a dozen times 

since then. A second search using her last known address posted the true second-to-last 

address but listed her as having an old telephone number and incorrect social security 

number. 

While we do not generalize from this sample of two cases, our experience raises an 

important concern that NMDPand donor centers need to be aware of College students are 

a prime recruiting target for NMDPdonor centers. Such people move frequently in their 

years immediately following graduation, making them difficult to track down in response 

to DR and CT requests. But our experience makes it questiomble if the software is up to 

the task required. 

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8. Most donor center staff with whom wemetinformed usthatthey phoned donors 

whose blood was in the repository. They try to contact them just as they would donors 

who have to go a blood center to have blood drawn for further testing. During our site 

visits, however, we met with staff from one donor center that simply forwarded the 

request to the repository, and tried to make contact with the donor only at the CT stage. 

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