Psychosocial Effects of Unrelated Bone Marrow Donation:
Experiences of the National Marrow Donor Program
By Victoria A. Butterworth, Roberta G. Simmons,t Glenn Bartsch, Bryan Randall, Mindy Schimmel, and David F. Stroncek
In this study, w e investigated the psychosocial effects of
unrelated marrow donation. Survey questionnaires were
administered pre-donation, shortly post-donation, and 1
year post-donationto all donors through the National Mar-
row Donor Program over a 3-year period. Univariate, bi-
variate, and multivariate analyses were then performed.
Donors were generally quite positive about the donation 1
year post-donation:87%felt it was "very worthwhile" and
91%would be willing to donate again in the future. Marrow
donors were more likely than kidney donors to feel better
D ONATING MARROW to a stranger may have impor-
tant psychosocial as well as physiological effects for the
donor. In addition to any medical complications they may
experience, donors may find the experience more or less sat-
isfying to themselves as individuals and may speak more or
less favorably of donating marrow to other potential donors.
Since unrelated marrow donors are volunteers, these effects
need to be studied in order to make donation as favorable
an experience as possible. This is important both in terms of
recruiting new donors and giving potential donors the infor-
mation they need in order to make an informed decision
regarding donation.
Bone marrow donation can be seen as a type of altruistic
or pro-social behavior. Pro-social behavior has been studied
in a number of different contexts,'*2from experimental studies
where subjects are given a variety of opportunities to help a
stranger who appears to be in diffi~ulty,~-~ to real life studies
of individualswho helped Holocaust victims in the Nazi era,"
to blood and organ donors."-'5 One of the major issues in
this research revolves around what are called self-rewards,
positive moods and self-evaluations that seem to result from
helping behavior. This report investigates the possible self-
rewards that stem from the real life altruism of bone marrow
donation.
Most of the research concerning the effects of serving as a
living-related organ donor comes from studies of kidney do-
nors. As the first major organ to be successfully transplanted
in large numbers, the kidney naturally generated the earliest,
and thus far the most, investigations into the effects of the
procedure on those involved.
Among the earliest studies of living-related kidney donors
were those conducted by Simmons et a1 at the University of
Minnesota. In one of their earliest s t u d i e ~ , ' ~they
. ' ~ admin-
istered questionnaires to all 130 living-related kidney donors
involved in the transplant program at Minnesota from 1970
to 1973. Donors were surveyed pretransplant, 5 days post-
transplant, 1 year posttransplant, and 5 to 9 years posttrans-
plant.
At the posttransplant follow-up interviews, the vast ma-
jority of donors indicated they were extremely happy to have
been able to donate a kidney and that they felt much closer
to the recipient. Even over the short period of time from the
pre-donation to the shortly post-donation interview ( 1 to 2
weeks), living-related kidney donors reported a significant
increase in global self-esteem and happiness, a change that
persisted over the year following the transplant. In fact, com-
pared with normal controls, the donors went from being no
Blood, Vol81, No 7 (April 1). 1993: pp 1947-1959
about themselves as a result of the donation (P < ,001).
Donors with longer collection times, in general, had less
positive psychosocial outcomes from the donation. Donors
who experienced lower back pain or difficulty walking as a
result of the donation were more likely to experience the
donation as more stressful and painful than expected, but
no more likely to experience it as less positive emotionally
than donors who did not experience these side effects.
0 1993 b y The American Society of Hematology.
different pretransplant to being significantly happier post-
transplant. Thus, for a majority of living-related kidney do-
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nors, the experience seems to have yielded considerable psy-
chological benefits. This type of altruism, then, appeared to
produce the significant self-rewards suggested in the larger
literature on altruism.'
This is not to say that there were no donors who experi-
enced emotional distress from their participation. Depending
on the measures used, approximately 5% to 8% ofthe overall
sample expressed extreme ambivalence or regret at having
participated, at all points in time. Further, if the donation
was unsuccessful, and the graft was rejected, 18%ofthe donors
expressed regret.
Other investigators have also studied living-related donors,
although the studies were usually based on many fewer
case^.'^-^^ These studies suggest that the risk of psychological
problems in living-related kidney donors following transplant
is relatively low. There is, however, a significant minority
who will develop adjustment problems. Several
s t ~ d i e s ~ ~reported
% ~ ~ higher
, ~ ~ ,proportions
~ ~ , ~ ~ of living-related
kidney donors developing adverse reactions than those re-
ported in the studies by Simmons et al and by several of the
studies by other investigators. Much of the difference may
lie in the relatively small numbers of living-related kidney
donors surveyed in the studies that emphasize negative out-
~~
From the Department of Psychiatry, University of Pittsburgh,
Pittsburgh, PA; the School of Public Health, University of Minnesota,
Minneapolis. MN; the Department of Sociology and Social Anthro-
pology, Bar-llan University, Ramat-Gan, Israel; and the Department
of Laboratory Medicine and Pathology, University of Minnesota
Hospital and Clinic.
f Deceased.
Submitted April 20, 1992; accepted December 1, 1992.
Supported by the National Institute of Mental Health Grant No.
IROlMH31249, Naval Medical Research Institute Grant NO0014-
86-C-0575, National Heart, Lung and Blood Institute Grant N01-
HB-97075, and the NMDP.
Address reprint requests to VictoriaA. Butterworth, PhD, University
of Pittsburgh Medical Center, Ofice of Education and Regional Pro-
gramming, WPIC, 3811 O'Hara St, Pittsburgh, PA 15213.
The publication costs of this article were defrayed in part by page
charge payment. This article must therefore be hereby marked
"advertisement" in accordance with 18 U.S.C. section 1734 solely to
indicate this fact.
0 1993 by The American Society of Hematology.
0006-4971/93/8 I07-0006$3.00/0
1947
I 948
comes. The numbers appear, from the descriptions offered
in the reports, to be associated with a relatively low volume
of transplants performed at the centers involved. It is well-
known in the field that programs performing relatively few
transplants are less successful in terms of patient outcome,
suggesting that the living-related kidney donors in these stud-
ies were exposed to a greater variety and severity of stressful
complications in the recipients. Nevertheless, according to
these authors, it is often possible to say on the basis of pre-
transplant psychological assessments who is at greatest risk
for developing these problems.
Literature on blood donation” tends to focus on charac-
teristics of blood donors, motivation for blood donation, and
the effectiveness of particular recruitment practices. One study
of pheresis participants suggests that giving may provide
emotional gratification, making one feel heroic, and thus
heightening ~elf-esteem.~~ Another)’ suggests that the key
variable associated with donation may in fact be self-esteem,
while a third36reports that donors and nondonors alike felt
or thought that donating blood gave people personal satis-
faction. Two further s t ~ d i e s , ~one
’ , ~ ~with whole blood and
one with pheresis donors, found that an important reason
people became donors was the sense of feeling special.
Despite the substantial body of literature on both kidney
and blood donors, there is scant literature to date on marrow
donors. The one published study on related marrow donors39
is limited to data collected substantially after the fact and
only on those donors whose recipient was alive at the time
of the study. Studies of unrelated marrow donors consist of
those by the investigators from this data set.@44*
In this study, we concentrate on three aspects of the psy-
chosocial outcomes for unrelated bone marrow donors. First,
we investigate donors’ general reaction to the donation psy-
chosocially: how satisfied were they with the donation, would
they be willing to donate again? Second, what effects do par-
ticular aspects of the medical procedure (duration of anes-
thesia, collection time, and volume of marrow collected) have
on the way donors feel about the donation? Finally, how do
donors’ reactions to the donation differ if they experienced
physical side effects?
We expected bone marrow donors, like kidney donors, to
experience personal satisfaction and an increase in self-eval-
uation as a result of the donation and therefore be willing to
donate again. However, we expected a small proportion of
bone marrow donors to experience emotional distress as a
result of the donation. We expected a higher proportion of
negative psychosocial outcomes among those with longer
duration of anesthesia, longer collection time, and larger vol-
ume of marrow collected. Finally, we expected bone marrow
donors who experienced physical side effects as a result of
the donation to have less positive experiencesthan those who
did not.
Through this study, we hope to develop a picture of some
of the self rewards of unrelated bone marrow donation as
~ ~~
* These analyses were conducted at different points in time, and
therefore the number of cases vary among studies depending on the
number of donors that had been collected at that time.
BUTTERWORTH ET AL
well as investigating certain situations likely to lead to a neg-
ative donation experience. These findings can then be com-
pared with those from the studies on other living donors in
order to provide information on the effects of different types
of pro-social behavior. This data can also be used to provide
more detailed information to potential donors on the possible
effects of their donation experience for purposes of informed
consent. Donor centers can be informed of situations that
are more likely to lead to negative psychosocial outcomes.
MATERIALS AND METHODS
Subjects and Procedure
The subjects for this report were the 493 participants who donated
marrow through the National Marrow Donor Program (NMDP) be-
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tween December l, 1987 and November 3, 1990. The NMDP registry
was founded in order to match healthy individuals who might be
willing to donate marrow to someone they did not know with patients
who needed a marrow transplant but could not find an available
donor among their own relatives. Recruitment of these donors was
initially from regular platelet or blood donors, who had already been
HLA typed. While donating blood or platelets, these people were
often given an information card to fill out and return if they were
interested in becoming a part of the registry. In other cases, infor-
mation was sent to these persons by mail. Later donors were recruited
through community donor drives. In these drives, local media often
ran stories on particular individuals who needed a bone marrow
transplant but who could not currently find a donor through their
relatives or the registry. Readers were asked to become a part of the
registry to help this individual as well as others in the future. In some
cases, it was suggested that potential donors pay the cost of their own
HLA typing. Some drives particularly attempted to secure volunteers
from the same ethnic group as the potential recipient.
Once someone on the NMDP registry was matched to a potential
recipient, they attended an information session with the medical di-
rector and the coordinator for their donor center. These information
sessions lasted approximately 1 hour. All potential donors, before
they consented to become a bone marrow donor, were given infor-
mation on the collection procedure, risks and benefits of bone marrow
donation, and anesthesia options, and they were usually shown a
videotape that described a related donor transplant. Shortly after
they gave final consent to bone marrow donation, donors were given
a pre-donation questionnaire.
Questionnaires were sent to all donors 1 week post-donation and
1 year post-donation. Subjects were informed that no one at their
donor or transplant center would see their answers, and only the
research team at Pittsburgh and the computer team hired by the
National Marrow Donor Program would have access to this infor-
mation. Subjects sent questionnaires directly back to the NMDP data
center in sealed envelopes. This study procedure was approved by
the University of Pittsburgh Psychosocial Institutional Review Board.
In addition to the questionnaire data, information on donor col-
lection parameters and physical side effects were collected on stan-
dardized forms by the NMDP. Marrow collection center personnel
completed a form describing the marrow collection procedure in-
cluding duration of anesthesia, collection time, volume of marrow
harvested, and volume of marrow harvested per kilogram of donor
body weight. Beginning November, 1988, donors were also surveyed
by telephone by donor center personnel in order to assess each donor’s
recovery. Donors were surveyed every 7 days following the collection
until they reported that they had both emotionally and physically
recovered completely. Results of the telephone survey were recorded
PSYCHOSOCIAL EFFECTS OF BONE MARROW DONATION
on hard copy forms. The computer system at the NMDP was able
to combine data from these various sources.
Consent rates for questionnaires for this sample were 94.6% pre-
donation, 90.5% shortly post-donation, and 74.5% 1 year post-do-
nation. Among donors who returned shortly post-donation ques-
tionnaires, those who returned 1 year post-donation questionnaires
for this sample were compared with those who did not. Chi-square
analyses were performed on these two groups for all variables used
in the multivariate analyses. None of these chi-square analyses were
significant at the P = .05 level. Thus, it appears that nonresponders
were not significantly different from responders on the variables to
be used in this study.
Demographically, subjects were 54% male and 46% female. Ninety-
eight percent were white. More than half (63%) of the subjects were
mamed and 22% had never married while 15% were divorced, sep-
arated, widowed, or part of some other marital arrangement. Donors
were highly educated: less than 1% were not high school graduates
and 79% had completed some college. Religiously, 41% were Pro-
testant, 36%were Catholic, 4% were Jewish, and 19%did not consider
themselves part of those religions.
Measures
Dependent variables (outcome measures). Three very similar
questionnaireswere administered at the three different points in time,?
consisting predominantly of multiple choice questions for which re-
spondents were asked to check the box that most closely matched
their feelings. Donors were asked multiple choice questions measuring
their satisfaction with the donation, whether they would be willing
to donate again, how they felt about themselves as a result of the
donation, how stressful they perceived the donation to be, and how
womed they were now about their health (for exact items and response
options, see Tables 1 and 2). Self-evaluationand satisfaction measures
were chosen so as to be directly comparable with Simmons’ studies
on living-related kidney donors. Only a specific and limited set of
psychosocial variables was studied in this population.
Also relevant to the analysis in this report is a scale named the
better person scale. This is a ten-item scale derived from Simmons
et all7 that addresses the question of whether the donor feels like a
better person due to the donation (for exact items, see Table 1). The
Cronbach’s alpha (a measure of internal consistency between items
in the scale45)for bone marrow donors was .78 shortly post-donation
and .9 1 1 year post-donation. Cronbach’s alpha for kidney donors
was .72. The items on the Better Person scale were designed to have
face validity, as Table I illustrates. Prior results17 indicate construct
validity as the Better Person scale correlates with expected variables.
Living-related kidney donors who were less happy in general pre-
donation scored less highly on the Better Person scale post-donation
as did family “black sheep.” As expected, donors who received explicit
gratitude from the recipient scored more highly on the Better Person
scale.
Independent variables. Four bone marrow collection parameters
were measured in order to investigate their effect on donor psycho-
social outcomes4‘? duration of anesthesia, collection time, volume of
marrow harvested, and volume of marrow harvested per kilogram
t The predonation questionnaire varied somewhat from the shortly
post-donation and 1 year post-donation questionnaires in that it con-
tained a number of demographic questions and questions concerning
the events and feelings that led to the decision to donate and did not
include many of the questions used in these analyses conceming
donors’ reaction to the donation and their willingnessto donate again.
1949
of donor body weight.$ The duration of the anesthesia was the time
interval between the start of general anesthesia and the time of dis-
charge from the operating room. The collection time was defined as
the interval between the start of the marrow collection and the end
of the marrow collection. The amount of marrow collected was de-
termined as the difference between the final volume of marrow and
media and the volume of media added to the marrow.§
Two variables were collected from donor center nurses concerning
the donor’s physical condition following the donation: (1) presence
of a lot of lower back pain or difficulty walking as a result of the
donation and (2) length of recovery time. Dichotomous scores were
created for each of these variables. Donors were categorized as those
experiencing a lot of lower back pain or a lot of difficulty walking
and those who experienced other levels of pain in these two areas.
Length of recovery time was categorized as recovery times of more
than 2 weeks versus recovery times of 2 weeks or
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Analysis
Analyses were performed in order to investigate donors’ psycho-
social reactions to the donation, to examine the effects that particular
aspects of the medical procedure had on donors’ feelings about the
donation, and to look at how donors’ reactions to the donation differed
ifthey experienced physical side effects from the donation. Data were
analyzed using univariate, bivariate, and multivariate techniques.
Items were selected before analyses on the basis of their relevance to
the issues investigated here (for exact items, see Tables 1 and 2).
Univariate analyses examined frequencies of multiple choice
questionnaire responses. Items of the Better Person scale (Table 1)
were analyzed individually in order to develop an understanding of
how donors’ sense of themselves changed as a result of the donation.
These items were also combined as a scale and looked at in com-
parison with the responses of living-related kidney donors on this
same scale.
Seven questionnaire items# were selected for univariate, bivariate,
and multivariate analyses (for exact items and response options, see
Table 2). These items measured the respondents’ perception of some
3 For the first 2 years, data on these variables were collected by
marrow donor center personnel from medical charts. However, the
necessary information was sometimes missing and therefore some-
times produced missing cases in the analyses. In later years a form
was distributed asking for the necessary data, and this form had to
be turned in with the marrow itself. Thereafter missing data were
sharply reduced.
4 When the amount of media added to the marrow was missing
from the hospital chart (occurring usually in the first 2 years of data
collection), this value was estimated for each collection facility based
on cases for which amount of media was recorded. A regression line
through the origin between collection volume and amount of media
was constructed for this purpose. The median fraction of media in
the total volume was 0.14 and did not vary much by center. There
was a range between 0.08 and 0.26. Seventy-six percent of the col-
lection facilities had fractions between 0.09 and 0.16.
I’ The amount of missing data for this variable is larger than for
others because: (1) no data were collected on this variable for the
first 60 transplants and (2) some observations were excluded due to
too many missing phone calls.
# Different items concerning the donors’ willingnessto donate again
in the future were administered in shortly postdonation and 1 year
post-donation questionnaires (see Table 2). The item of these two,
which was administered at the relevant time period, was selected for
bivariate and multivariate analyses.
1950 BUTTERWORTH ET AL

Table 1. Better Person Scale Items

Shortly 1 Year
Post-Donation (%) Post-Donation (%)

1. Do you somehow feel like a better person for having donated?

Yes" 71 73
No -
29 27
100 100
(N = 427) (N = 350)
2. Donating bone marrow makes one feel like he (she) is somehow a bigger and more worthwhile
person. Do you. . .
Agree a lot 25 18
Agree a little' 42 41
Disagree a lot 16 18
Disagree a little -17 23
100 100
(N = 427) (N = 353)
3. A person willing to donate bone marrow is almost a hero. Do you
Agree a lot' 6 7

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Agree a little' 40 42
Disagree a little 30 30
Disagree a lot -24
100
-21
100
(N = 426) (N = 351)
4. Donating bone marrow was really sort of a high point in my life, making everything seem more
meaningful. Do you . . .
Agree a lot* 36 32
Agree a little' 39 44
Disagree a little 16 11
Disagree a lot - 9 13
100 100
(N = 426) (N = 355)
5. When you think about the bone marrow transplant (for which you donated) have you felt . . .
Very worthwhile* 91 87
A little worthwhile 9 13
Not at all worthwhile -0
100 100
(N = 428) (N = 354)
6. Here is a list of the ways some people feel about those who donate bone marrow. We'd like
you to tell us which is the closest to the way you would describe an unrelated
bone marrow donor.
Anyone who donated bone marrow could be called a hero' 2 3
A person who donates bone marrow makes an exceptional sacrifice* 11 10
Anyone who donates bone marrow makes a sacrifice somewhat out of the ordinary 38 40
It is generous to give bone marrow but anyone should do as much - 49 48
100 100
(N = 422) (N = 356)
7. Since the transplant, would you say you think . . .
More highly of yourself-that you're a better person than you were 30 25
before the transplant.
Less highly of yourself' 0 1
There is no change in the way you think of yourself since the transplant -
70 74
100 100
(N = 428) (N = 355)
8. When you think about the bone marrow transplant, have you felt
Very proud* 66 68
A little proud 30 28
Not a t all proud - 4 2
100 100
(N = 431) (N = 354)
9. When you think about the bone marrow transplant, have you felt . . .
Very brave* 15 6
A little brave 48 49
Not at all brave 37 45
100 100
(N = 429) (N = 355)
10. When you think about the bone marrow transplant, have you felt . . .
Very heroic' 7 7
A little heroic' 41 46
Not a t all heroic -52 47
100 100
(N = 429) (N = 352)
Responses marked by an asterisk get scored as 1; the rest get scored as 0. The total score for all 10 questions in this scale varies from 0 to 10,
with a high score standing for a greater perception of one's self as a better person.
PSYCHOSOCIAL EFFECTS OF BONE MARROW DONATION 1951

Table 2. Reactions t o Donation Shortly and 1 Year Post-Donation

Shortly 1 Year
Post-Donation(%) Post-Donation(%)
11. In terms of the way you felt physically during and after the donation, would you say
donation was. . .
Very stressful 6 5
Pretty stressful 20 15
Not very stressful 51 50
Not at all stressful 23 2
100 100
(N = 429) (N = 356)
12. Would say you are. . .
Very worried about your health now 0 0
Somewhat worried 2 3
A little worried 10 9
Not at all worried about your health now 88 3

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100 100
(N = 430) (N = 356)
13. Did you feel well prepared for the donation experience?
Yes, totally 76 84
Yes, but could have been better prepared 23 16
No 1 3
100 100
(N = 428) (N = 353)
14. Was the experience. . .
More painful 20 17
Less painful 42 40
About what you expected 38 43
100 100
(N = 429) (N = 355)
15. How was the experience different from your expectations?Was it . . .
More emotionally positive 45 60
Less emotionally positive 4 6
About what you expected 3 34
100 100
(N = 427) (N = 356)
16. If someone were to ask you sometime in rhe future to donate bone marrow, do you think you
would be willing to donate once more?
Would donate 91
Would not donate 2
Unsure 7
100
(N = 429)
17. If a recipient needed a second transplant, do you think you would be willing to donate a
second time?
Would donate a second time 95
Would not donate a second time 1
Unsure 4
100
(N = 353)
18. What would your advice be to someone who was considering being a donor? Would you
Encourage someone strongly 87 91
Encourage someone a little 12 9
Discourage someone a little 1 0
Discourage someone strongly - 0 1
100 100
(N = 428) (N = 357)

o f the psychosocial aspects ofthe donation shortly post-donation and
I year post-donation (see above). As each o f these seven variables
measured somewhat different psychosocial aspects of the donation,
individual variables were not combined into variable scores.
Cross tabulation and logistic regression analyses were used to in-
vestigate the way in which donor collection parameters affected donor
psychosocial outcomes in bivariate and then multivariate analyses.
Independent variables in these analyses were the four donor collection
parameters (see Measures). Dependent variables were t h e same seven
questions concerning perceived donation experience listed in Table
1952
2. These variables were dichotomized for bivariate and multivariate
analyses. Response options were combined such that response
groupings were as similar in size as possible.
Bivariate analyses examined individual relationships between in-
dependent and dependent variables. However, since the four collection
variables have been shown to be correlated with one another (ap-
proximate r = 0.2046)multivariate analyses were used to control for
the remaining three variables while investigating the effects of a par-
ticular dependent variable.7
Relative odds ratios are presented for all logistic regression coef-
ficients that were statistically significant. The relative odds ratio shows
the odds of being in the first category of the dependent variable versus
the second category as the value of the independent variable increases
by one unit. In these analyses, the units of the independent variables
were those used to measure the variables. Odds ratios are computed
by taking the antilog of the unstandardized logistic regression coef-
ficient (for further explanation, see Results, below).
Finally, in order to determine the psychosocial effects of physical
side effects of the donation, chi-square analyses examined the psy-
chosocial reactions of donors who experienced physical side effects
as a result of the donation versus those who did not. Independent
variables were those used by Stroncek et a1 in their analyses? level
of back pain or difficulty walking experienced by the donor and length
of recovery time. Dependent variables were the seven psychosocial
variables used in the multivariate analyses measured at 1 year post-
donation (Table 1).
RESULTS
Donor Satisjaction With the Experience
Shortly post-donation. Donors were generally quite pos-
itive about the experience shortly after the donation (Table
1). When asked, “When you think about the marrow trans-
plant (for which you donated) have you felt . . .” (item 5),
9 1% indicated they felt “very worthwhile,” and < I % ( 1 per-
son) checked, “not at all worthwhile” (9% chose “a little
worthwhile”). Sixty-six percent of marrow donors checked
“agree a lot” or “agree a little” to the question “Donating
bone marrow makes one feel that he(she) is somehow a bigger
and more worthwhile person” (item 2). In answering the
multiple choice question, “Donating bone marrow was really
sort of a high point in my life, making everything seem more
meaningful” (item 4), 75% agreed “a lot” or “a little.” Sixty-
five percent of donors felt “very proud” about having donated
(item 8) and 7 I% felt “like a better person” (item 1) for having
donated (Table I).
Questions conceming whether the donors would have been
willing to donate again or recommend donation to a friend
are also indicators of positive feelings about the donation (see
Table 2 ) . When asked, “What would your advice be to some-
one who was considering being a donor?’ (item 18), 87% of
donors said they would “encourage someone strongly” while
no one said they would “discourage someone strongly from
being a donor.” When asked, “If you had the decision to
lI Tests for multicollinearity between the two volume variables
(volume of marrow collected and volume of marrow collected per
kilogram bodyweight) showed that multicollinearitywas not present
and therefore the two variables could be included in the same equa-
tion.
BUTTERWORTH ET AL
make over again, do you think you would still decide to do-
nate bone marrow, or not?’, fully 98% of donors said they
would. When this question was changed slightly to ask, “If
someone were to ask you sometime in the future to donate
bone marrow, do you think you would be willing to donate
once more?’ (item 16), 91% “would donate” while only 2%
“would not” and 7% were “unsure.”
This is not to say that some donors did not experience
stress or inconvenience as a result of the donation (Table 2).
When asked, “In terms of the way you felt physically during
and after the donation . . .” (item ll), 26% or a sizeable
minority reported the donation as “very stressful” or “pretty
stressful.” While 88% of donors were “not at all worried about
(their) own health now” (item 12), 10%were “a little worried”
and 2% were “very” or “somewhat worried” about their
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health. Forty-three percent of donors found the donation
“very” or “somewhat inconvenient” in terms of time lost
from work, 31% in terms of “time spent waiting,” and 13%
in terms of child care.
One year post-donation. Measures of donor satisfaction
tended to be equally high or higher I year post-donation.
Larger proportions noted the experience as more emotionally
positive (item 15) than expected (60% at I year versus 45%
shortly post-donation). At 1 year posttransplant, donors were
asked if they would be willing to donate again if their patient
needed a second transplant (item 17). Fully 95% said they
would, only 1% said they would not, and 4% were unsure.
Changes in selfevaluation as a result of donation. The
ten-item Better Person scale was used to determine if marrow
donors felt like better persons because they donated. The
mean score on this scale for relatives who donated kidneys”
was compared with the mean score for these marrow donors.
The mean score for the marrow donors was 5.26, significantly
higher than the kidney donors’ mean of 3.31 (P < .001).
These results indicate that the marrow donors are even more
likely to think of themselves as better persons as a result of
the donation than are kidney donors.
Effect of Collection Parameters on Donor Experiences
The next question at issue was whether psychosocial out-
comes were affected by collection parameters (that is, duration
of anesthesia, collection time, volume of marrow collected,
and volume of marrow collected per kilogram of donor
bodyweight).
Shortly post-donation. In most cases changes in volume
of marrow collected and volume of marrow collected per
kilogram of bodyweight were not significantly related to
changes in the variables examined, when bivariate analyses
were performed (Table 3). Duration of anesthesia and col-
lection time were related to significant differences for several
variables. Shorter anesthesia and collection time were related
to more positive psychosocial reactions. Shortly post-dona-
tion, donors with shorter duration of anesthesia and collection
times were less likely to report the donation as stressful (bi-
variate P < .001), were less likely to report feeling worried
about their own health now (P < .05), were less likely to
report feeling unprepared for the donation experience (P<
.OOI), were less likely to report the experience as more painful
PSYCHOSOCIAL EFFECTS OF BONE MARROW DONATION 1953

Table 3. Percent of Donors Checking Indicated Response Shortly Post-Donation by Level of Collection Parameters
Effectsof Duration of Anesthesia Effects of Collection Time Effects of Volume of Marrow Effects of Volume of Marrow
bin) (-Media) per Kilogram (-Media)
P’ P’ P’ P’
Response c120 120-180 >180 (N) <60 60-90 >SO (N) c1.000 1,000-1.500 >1.500 (N) 42.5 12.5-17.5 >17.5 (N)

Donation was very, 75 82 71 80 80

pretty, or not
very stressful (%)
Very, somewhat, 9 15 24 <.05 10 12 21 <.05 11 13 8 NS 10 15
or a little worried (387) (349) (368)
about own health

Not prepared for 17 25 59 <.001 17 21 41 <.001 23 26 28

donation or could (386) 1348)
have been better
prepared (%)

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Donation more 48 67 92 <.001 47 57 84 <.001 42 25 64
painful or about (386) 1348)
what expected
(%I
Donation less 54 56 65 NS 53 55 56 NS 54 56 61
emotionally (385) (347)
positive or what
expected (%)
Would not donate 5 10 24 <.001 6 9 15 <.05 8 11 8 NS 6 9
at sometime in (385) (349) (366)
the future or
unsure (%)
Would not 10 15 18 NS 10 15 16 NS 13 14 18 NS 13 11
encourage 1386) (348) (366)
someone else
strongly t o be a
donor (%)
Abbreviation: NS, not significant.
The P values are based on logistic regression with independent variable expressed in indicated units.

or about what they expected (P < .001), and were less likely
to say they “would not donate” again if asked to donate once
more in the future (P < .001).
For only one of the shortly post-donation measures ex-
amined was the volume of marrow removed per kilogram of
bodyweight significantly related in the bivariate analysis (at
the P = .05 level). When asked, “In the future, would you
be willing to donate once more?”, donors were less likely to
say they would donate if they had larger amounts of marrow
removed per kilogram of bodyweight (P < .05). None of the
post-donation variables examined showed a significant re-
lationship with the simpler volume of marrow removed mea-
sure.
One year post-donation. At 1 year post-donation, fewer
measures showed significant relationships. At this later point
in time we are primarily measuring the effect of the collection
parameters on memory of outcome. Similar effects remained
in regard to collection time: the longer the collection time,
the more negative the memory of psychosocial effects (Table
4).As collection time increased, donors still were more likely
to remember the donation as somewhat stressful (P< .05),
more likely to say the donation was more painful or what
they had expected (P< .001), and, even now, were more
likely to say they would not donate a second time if the same
recipient needed a second transplant (P < .01). Only one
response variable was significantly related to each of the other
collection parameters: as duration of anesthesia increased,
donors were more likely to remember the donation as more
painful or about what they had expected (P < .Ol), and as
volume of marrow collected and volume of marrow collected
per kilogram of bodyweight increased, donors were more
likely to say that they would not donate a second time for
the same recipient (P < .01). Other response variables were
not significantly related to these two measures.
Multivariate analysis. Since the collection parameters
used as independent variables in the bivariate analyses were
correlated with each other, multivariate analyses were con-
ducted on these same variables in order to control for the
other three collection parameters. So, for example, shortly
post-donation stress due to the donation correlated signifi-
cantly with both duration of anesthesia and collection time
on bivariate analyses (Table 3). However, when the other
independent variables were controlled, stress continued to
relate significantly with only the collection time variable and
did not significantly relate to duration of anesthesia in the
equation including all four independent variables (Table 5).
1954 BUTTERWORTH ET AL

Table 4. Percent of Donors Checking Indicated Response 1 Year Post-Donation by Level of Collection Parameters
Effects of Duration of Anesthesia Effects of Collection Time Effects of Volume of Marrow Effects of Volume of Marrow
(min) (min) (-Media) per Kilogram (-Media)
P’ P’ P‘ p‘
Response <120 120-180 >180 (N) <60 60-90 >90 (N) <1,000 1,000-1.500 >1,500 (N) <12.5 12.5-17.5 117.5 (N)

Donation wasvery, 67 71 82 NS 63 71 81 <.05 64 71 74 NS 62 74 72 NS

pretty, or not (3 18) (283) (302) (207)
very stressful (%)
Very,somewhat, 11 11 21 NS 11 11 14 NS 8 11 18 NS 9 9 14 NS
or a little worried (319) (284) (302) (297)
about own health
(%I
Notpreparedfor 11 19 36 <.001 10 15 3 0 <.001 16 18 12 NS 17 18 14 NS
donation or could (3 16) (282) (299) (294)
have been better
prepared (%)

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Donation more 53 66 79 1.01 49 54 82 <.001 55 64 53 NS 51 69 61 NS
painful or about (317) (282) (301) (300)
what expected
(%)
Donation less 38 36 54 NS 36 38 51 NS 36 39 50 NS 34 43 44 NS
emotionally (318) (283) (302) (3011
positive or what
expected (%)
Wouldnotdonate 4 3 14 NS 2 4 11 <.01 2 6 15 <.01 3 5 11 <.01
a second time to (3 15) (280) (299) (298)
same recipient or
unsure (%)
Would not 8 9 11 NS 8 7 13 NS 9 9 18 NS 8 8 15 NS
encourage (320) (285) (303) (298)
someone else
strongly to be a
donor (%)
P based on logistic regression with independent variable expressed in indicated units

In this example, odds ratios suggest that for every unit change
in the collection time parameter (for this variable 1 unit =
30 minutes), individuals became 1.5 times more likely to
have experienced the donation as “very” or “pretty,” or “not
very stressful,” rather than “not at all stressful.”
Shortly post-donation, volume and volume per kilogram
were not associated with negative effects when anesthesia time
and collection time were controlled (Table 5). The duration
of anesthesia continued to relate significantly with 3 of 7
dependent variables when the other collection variables were
controlled. As anesthesia time increased one unit ( 1 unit =
60 minutes), donors were twice as likely (1) to feel not pre-
pared or “could have been better prepared” for the donation
experience, rather than totally prepared, (2) to experience the
donation as more painful or about what they expected rather
than “less painful,” or (3) to be unwilling or unsure whether
they would be willing to donate again some time in the future
(rather than willing to donate). As collection times increased
1 unit ( I unit = 30 minutes), donors were 1.6 times more
likely to find the donation “more painful” or what they ex-
pected rather than “less painful” or “about what you ex-
pected” (Table 5).
As in the bivariate analysis, at 1 year post-donation there
are fewer significant effects than shortly post-donation (Table
6). Collection time was the only variable with significant ef-
fects when other variables were controlled. Longer collection
times were associated with donors being ( I ) 1.9 times more
likely to say they were “not prepared” or “could have been
better prepared” for the donation as opposed to “totally pre-
pared,” (2) 2.2 times more likely to remember the donation
as “more painful” or about what they expected rather than
“less painful,” and (3) 3.1 times more likely to say they “would
not donate” a second time to the same recipient or unsure about
such a donation than to say they would donate (for discussion
of the clinical significance of these findings, see Discussion).
Donors Experiencing Physical Complications
From the Donation
The reason length of anesthesia and collection times are
related to the psychosocial outcomes may be due to the fact
that longer anesthesia and collection times affect the physical
complications experienced by the donor* and the physical
complaints in turn affect psychosocial reaction. Our next set
of analyses were performed in order to determine whether
those donors who experienced physical complications from
the donation were the ones more likely to experience adverse
psychosocial outcomes from the experience. Using cross tab-
ulation analysis, we compared donors with a lot of lower
PSYCHOSOCIAL EFFECTS OF BONE MARROW DONATION 1955

Table 5. Logistic Regression Analyses of the Effect of Four Collection Variables

on Psychosocial Outcomes of Donors Shortly Post-Donation
Volume of Marrow Volume of Marrow
Duration of Anesthesia Collection Time (-Media) per Kilogram (-Media)
(unit = 60 min) (unit = 30 min) (unit = 500 mL) (unit = 5 mL/kg)
P for Pfor
Relative Regression Relative Relative Relative Equation
Odds Description Odds Ratio‘ Coefficient Odds Ratio‘ P Odds Ratio‘ P Odds Ratio‘ P (N)
Donation very, pretty, or - NS 1.5 <.05 - NS - NS NS
not very stressful vs not (303)
at all stressful
Very, somewhat, or little - NS 1.8 <.05 - NS - NS NS
worried about own (305)
health vs not at all
worried
Not prepared or could have 2.0 1.01 - NS - NS - NS <.001

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been better prepared for (305)
donation vs totally
prepared
More painful or what 2.0 <.01 1.6 <.05 - NS - NS ,0001
expected vs less painful (304
Less emotionally positive - NS 1.5 <.05 - NS - NS NS
or about what expected (303)
vs more positive
Would not donate a 2.1 <.05 - NS - NS - NS <.05
second time to the same (305)
recipient or unsure vs
would donate
Would not encourage - NS - NS - NS - NS NS
someone strongly to be (299)
a donor vs would
* The relative odds ratio (where regression coefficients are statistically significant) shows the relative odds of being in the first category rather than
the second category as the value of the independent variable increases 1 unit. It is computed by taking the antiln of the unstandardized logistic
regressioncoefficient; eg, as collection time increases, the relative odds of being in the more stressful group versus the less stressful group changes
from 1 .OO to 1.7.

back pain or difficulty walking and donors who took more
than 2 weeks to fully recover to donors with more favorable
physical outcomes (Table 7).
There were several significant results of these analyses.
Eighty-three percent of donors who experienced a lot of back
pain or difficulty walking found donation somewhat stressful
compared with only 65% of donors with less pain in these
areas (the choice for stress, as in the other analyses, was some
degree of stress versus “not at all stressful”). Eighty-two per-
cent of those with a lot of back pain or difficulty walking
compared with only 52% of those with less pain reported the
donation to be at least as painful as they expected if not more
so. The NMDP generally informed donors that the donation
would be similar to falling on one’s back suddenly on the
ice. Only a minority (38% over all) of donors reported the
donation to be less painful than expected.
In addition, 32% of those with a lot of back pain or
difficulty walking felt they could have been better prepared
for donation compared with only 12% of those with less
pain. Slightly more donors with these types of pain than
without would not donate a second time to their recipient
(9%v 3%).
When we compared those donors who took more than 2
weeks to recover from the donation with those who took 2
weeks or less to recover, we found that donors who took
longer to recover were more likely to report the donation as
“somewhat stressful” than their counterparts ( P < .05).
However, no significant differences were found between do-
nors with longer versus shorter recovery times on responses
to questions regarding whether the donation was more or less
painful than expected, more or less emotionally positive than
expected, whether the donor would be willing to donate a
second time to the same recipient, or whether the donor would
strongly encourage someone else to donate.
DISCUSSION
In general, the evidence suggests a positive picture of the
psychosocial outcomes of donating marrow for unrelated do-
nors. Donors generally were quite positive about the expe-
rience, saw it as worthwhile, and would be willing to donate
again in the future. Memories of donor satisfaction tended
to be equally high or higher 1 year post-donation. A minority
of donors did experience stress and inconvenience as a result
of the donation. Unrelated bone marrow donors were sig-
nificantly more likely to think ofthemselves as better persons
as a result of the donation than did living-related kidney do-
nors.
The multivariate analyses showed volume of marrow col-
1956 BUTTERWORTH ET AL

Table 6. Logistic Regression Analyses of the Effect of Four Collection Variables

on Psychosocial Outcomes of Donors 1 Year Post-Donation
Volume of Marrow Volume of Marrow
Duration of Anesthesia Collection Time (-Media) per Kilogram (-Media)
(unit = 60 min) (unit = 30 min) (unit = 500 mL) (unit = 5 mL/kg)
Pfor P for
Relative Regression Relative Relative Relative Equation
Odds Description Odds Ratio’ Coefficient Odds Ratio’ P Odds Ratio’ P Odds Ratio’ P (N)

Donation very, pretty, or - NS 1.7 <.05 - NS - NS NS

not very stressful vs not (248)
at all stressful
Very, somewhat, or little - NS - NS - NS - NS NS
worried about own (244)
health vs not at all
worried
Not prepared or could have - NS 1.9 <.05 - NS - NS <.01

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been better prepared for (242)
donation vs totally
prepared
More painful or what - NS 2.2 <.001 - NS - NS <.01
expected vs less painful (247)
Less emotionally positive - NS - NS - NS - NS NS
or about what expected (248)
vs more positive
Would not donate a - NS 3.1 <.05 - NS - NS <.01
second time to the same (245)
recipient or unsure vs
would donate
Would not encourage - NS - NS - NS - NS NS
someone strongly to be (245)
a donor vs would
The relative odds ratio (where regression coefficients are statistically significant)shows the relative odds of being in the first category rather than
the second category as the value of the independent variable increases 1 unit. It is computed by taking the antiln of the unstandardized logistic
regression coefficient; eg, as collection time increases, the relative odds of being in the more stressful group versus the less stressful group changes
from 1.OO to 1.7.

lected and volume of marrow collected per kilogram of body
weight as having little effect on the donor psychosocial out-
comes studied. Longer duration of anesthesia showed some
negative effects shortly post-donation; and several relation-
ships between anesthesia effects and memory of outcome
measures disappeared by 1 year post-donation. Most likely,
memory of the donation experience had blurred by 1 year
posttransplant and therefore only the strongest shortly post-
donation effects remained. Longer collection times were as-
sociated with more negative psychosocial outcomes both
shortly post-donation and 1 year post-donation.
Analyses comparing donors who experienced the physical
side effects of lower back pain or difficulty walking as a result
of the donation with donors who did not experience those
side effects indicated that donors with physical side effects
were more likely to perceive the donation as stressful, more
likely to experience the donation as more painful than ex-
pected, more likely to feel unprepared for the donation, and
more likely to be unwilling to donate again to the same re-
cipient. However, these same donors are no more likely to
experience the donation as less positive emotionally than their
counterparts who did not experience the symptoms. Donors
with longer recovery times were more likely to report the
donation as “somewhat stressful” than their counterparts.
However, length of recovery time was not associated with
any of the other psychosocial variables used in this analysis.
While we consider the size of these multivariate effects to
be moderate, we feel that these findings have clinical signif-
icance. We believe that response option groupings indicate
meaningful differences between the reactions of donors to
the donation. For example, on the expectation of painfulness
variable, we feel that it is likely that donors who perceived
the donation as “more painful” or “about what you expected”
had significantly different experiences of the donation than
those who perceived it as “less painful” than they expected.
It is also important to note that the NMDP deals with
volunteers who receive little from the procedure other than
the self rewards of donation. In order for the program to
continue to generate volunteers, it is important that donors
who speak to others experience the donation very positively.
This may not be as true for related donors (who can expe-
rience considerable rewards in terms of maintaining their
relationship to the recipient), or those who undergo medical
procedures that may result in positive impacts on their own
health. Moderate effects resulting from the donation may
therefore be more important in the case of NMDP donors
PSYCHOSOCIAL EFFECTS OF BONE MARROW DONATION 1957

Table 7. Percent of Donors Checking Indicated Response 1 Year Post-Donation by Physical Complications
Back Pain or Difficulty Walking Recovery Time as Assessed by Weekly Calls
From Donor Center Personnel
Other
Response A Lot Levels (N) p‘ 215 d <15d IN) P’

Donation was very, pretty. or

not very stressful vs not at
all stressful (%) 83 65 (333) ,001 86 67 (269) <.05
Very, somewhat, or a little
worried about own health
vs not at all worried (%) 12 12 (332) NS 18 12 (269) NS
Not prepared for donation or
could have been better
prepared vs totally
prepared (%) 32 12 (330) <.001 18 16 NS
Donation more painful or

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about what expected vs
less painful (%) 82 52 (331) <.001 75 58 NS
Donation less emotionally
positive or about what
expected vs more positive
(%I 39 44 (332) NS 46 38 (269) NS
Would not donate a second
time to same recipient or
unsure vs would donate (%) 9 3 (329) <.05 5 7 (266) NS
Would not encourage
someone else strongly to
be a donor vs would (%) 10 9 (333) NS 11 8 (270) NS

The Pvalues are based on chi-square analyses.

than they would be for others who have more to gain from
undergoing this type of procedure.
Several of these findings were similar to those of living-
related kidney donors. In both cases, donors were generally
positive about the experience and saw it as worthwhile. A
significant minority of donors experienced stress and incon-
venience as a result of the donation. However, unrelated bone
marrow donors differed from kidney donors in that Better
Person scale results indicated they felt better about themselves
as a result of the donation to a greater extent than did kidney
donors. We believe this finding indicates that some self re-
wards may be greater in the case of unrelated bone marrow
donors than in the case of living-related kidney donors. We
hypothesize that this result was due to the different normative
situations in which these two donors found themselves. Do-
nating a kidney to a close relative was an act that implied
more obligation for the donor than did donation of bone
marrow to a stranger. When other, qualitative data collected
from this same population4’ were analyzed concerning the
responses received from others regarding their donation, none
of the bone marrow donors stated that others expected them
to donate, while many reported that friends or co-workers
felt they were exceptional to be willing to undergo this sort
of sacrifice for someone they did not know. We hypothesize
that since the bone marrow donors had gone “above and
beyond the call of duty” in their act of donation, they could
feel better about themselves for having donated than kidney
donors who were more likely to be expected to perform this
act by family and friends.
At no point in time were there more than 2% of bone
marrow donors who indicated, if they had the decision to
make over again, that they would decide not to donate bone
marrow. And while physical complications from the donation
resulted in higher donor stress, they produced no change in
donor perceptions ofthe donation as being more or less pos-
itive emotionally than expected. This finding also may have
been due to the normative situation in which donors found
themselves. Some living-related kidney donors may have
succumbed to (real or perceived) family pressure to donate
and therefore were ambivalent or regretful about having do-
nated. Bone marrow donors, who did not have any contact
with the recipient or the recipient’s family before the dona-
tion, could more easily have refused to donate. Therefore,
those who chose to donate bone marrow would have been
more likely to be positive about the donation experience.
Future studies could be designed so as to investigate these
hypotheses more directly. Data collected on related bone
marrow transplants would prove useful in separating the ef-
fects of the normative situation of the donation (eg, whether
donation was made to a relative versus a stranger) from the
effects of the type of transplant (eg, kidney versus bone mar-
row). Data collected on people who sign up for the NMDP
but drop out before they reach the donation stage could help
determine who is likely to drop out in this process and suggest
whether they are likely to be those who would experience
ambivalence and/or regret if expected to donate. In this way,
the differential effects of different types of altruistic acts could
be examined.
1958
Our data indicate that the NMDP procedures used for
recruiting donors in this sample appeared to be effective, as
most donors would encourage someone else strongly to do-
nate and would donate again in the future. We wonder, how-
ever, to what extent this finding was affected by the fact that
most donors in this sample were recruited from regular plate-
let or blood donors. It is likely that such individuals manifest
a high internal motivation to donate. Community donor
drives, where donors are more likely to be subjected to peer
pressure to become a part of the registry, may solicit donors
who are less likely to have such strong internal motivation.
Donors with weaker internal motivation to donate may not
have such favorable psychosocial outcomes from the donation
experience. Future studies should investigate differences in
donor psychosocial outcomes for these two donor pools.
Altruism can be a positive experience for both the person
who gives and the person who receives. While donating bone
marrow to a stranger can be stressful or inconvenient for
some, for most it results in positive feelings about both the
transplant and themselves. Both unrelated bone marrow do-
nors and living-related kidney donors can, to varying degrees,
experience these self rewards from the donation.
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