knowledge and opinions about organ donation among urban high school students: pilot test of a health...
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Clin Transplantation 2000: 14: 292–303Printed in Ireland. All rights reser6ed
Knowledge and opinions about organdonation among urban high school students:pilot test of a health education program
Weaver M, Spigner C, Pineda M, Rabun KG, Allen MD. Knowledgeand opinions about organ donation among urban high school students:pilot test of a health education program.Clin Transplantation 2000: 14: 292–303. © Munksgaard, 2000
Abstract: Background: Increasing the diversity of the organ donor poolmight improve the opportunities for people of color on organ trans-plant waiting lists to receive donated organs. We report on the resultsof a pilot classroom health education program to improve knowledgeabout organ donation and transplantation among a diverse studentbody at an urban high school.Methods: The effectiveness of the educational program was evaluatedwith baseline and follow-up questionnaires which examined: 1) whetherthe program increased knowledge about organ donation; 2) whether thestudents’ opinions about organ donation changed; and 3) whether theprogram was related to any changes in opinion.Results: On the follow-up questionnaire, correct answers on 15 factualquestions increased by 18% for the treatment group, compared to 5%for the control group (p=0.00). Regarding opinions, at baseline 92%of white students had positive opinions about donation, compared to48% of the students of color (p=0.00). In the follow-up survey, theincrease in positive opinions among the students of color was signifi-cantly greater than among white students (p=0.04). In this pilot study,however, changes in opinions occurred with equal frequency amongstudents in the treatment and control groups.In regression analysis, both knowledge of the subject and discussingdonation with one’s family were significantly associated with positiveopinions about donation.Conclusions: Overall, this pilot study provided encouraging evidencethat the classroom health education program affected knowledge aboutorgan donation, and that opinions about organ donation are respon-sive to increases in knowledge.
Marcia Weavera,Clarence Spignera,Michele Pinedac, KimiG Rabund and MargaretD Allenb
a The Department of Health Services,School of Public Health, b The Departmentof Surgery, School of Medicine and c TheDepartment of Epidemiology, School ofPublic Health, University of Washington,Seattle, WA, USA; d Imik Enterprises,Seattle, WA, USA
Key words: minority – organ donation –school-based intervention – urban – youth
Corresponding author: Marcia Weaver,Ph.D., 937 Broadway Avenue East, Seattle,WA 98102, USA. Tel.: +1-206-616-9173;fax: +1-206-324-8124: e-mail:[email protected]
Accepted for publication 3 March 2000
The defining issue in the field of organ donation isthe shortage of donors. In 1998, there were 88 398people registered on waiting lists for organ trans-plants in the United States, of whom only 20 989received transplants (1). For kidneys, livers andhearts, which account for 90% of both the peopleon waiting lists and transplants performed, therewere 54 320 people on the waiting list for kidneys,of whom only 12 032 received kidney transplants;17 983 people on the waiting list for livers, ofwhom only 4 339 received liver transplants; and7 682 people on the waiting list for hearts, of whom
only 2 307 received heart transplants (1). Note thatthe 64 373 patients on the waiting list at the end of1998 underestimates the need for transplants sincethe 4 860 patients who died waiting for an organ in1998, as well as those who were transplanted, are,by definition, not included in that statistic.
The organ shortage has resulted in ever-increas-ing waiting times for organ transplant recipients.In kidney transplantation, the waiting times forminority recipients to receive a donated organ arealmost twice as long as for whites (1). In 1998, over35% of the people on the waiting list for kidneys
292
High school education on organ donation
were African–Americans, but only 22% of kidneytransplant recipients were African–American (1).Among the reasons that relatively fewer African–Americans receive kidney transplants are differ-ences in the distributions of blood groups andHLA antigen frequencies between African–Ameri-cans on the waiting list and the organ donor pool,which is predominantly white, as well as transfu-sion-related sensitization to common donor anti-gens with the blood donor pool, which is alsopredominantly white (1). Similar problems of dis-proportionate need based on disease prevalenceand difficulties in matching also increase waitingtimes for kidney patients of Asian and, to a lesserextent, Hispanic ethnicity (1). Furthermore, anylimitations for minorities in access to the trans-plant waiting list (2, 3) mean that the currentsituation underrepresents the problem. Increasingthe diversity of the donor pool (in terms of bloodgroups and HLA types) is one thing that mightincrease opportunities for minority patients on thewaiting list to receive a donated organ.
To reduce the shortage of organ donors, theNational Organ and Tissue Initiative of the U.S.Department of Health and Human Services(DHHS) seeks to increase organ donation by 20%in two years. Programs to increase organ donationcan be classified into two categories: organizationalprograms for the organ procurement agencies, hos-pital staff and patients’ families that aim to im-prove the organ procurement process; and publiceducation programs that aim to predispose thegeneral population towards organ donation (TheLewin Group, Inc. unpublished manuscript). Al-though their benefit remains controversial (4), pub-lic educational programs play an important role inincreasing organ donation, because there are sig-nificant causal relationships between knowledgeabout organ donation and attitudes towards it,between attitudes towards organ donation andwillingness to donate, and between willingness todonate and the decision to request or carry anorgan donor card (5). Further, families tend to bemore willing to donate the organs of a deceasedrelative if he/she expressed a willingness to donate(6, 7) or signed an organ donor card (8).
There is evidence, albeit limited, of differences inpublic opinion on the subject of organ donationbetween people of color and whites, and educa-tional programs, primarily targeting adults, haveaddressed those differences. Previous studies haveshown that a lower percentage of people of colorthan whites are willing to donate their organs (1, 8)or carry an organ donor card (8–10). These differ-ences may have been partly attributable to the factthat public education programs have, in the past,
tended to focus on a white, middle-class audience(6) and to some of the five concerns identified byCallender et al. (11) from interviews conductedwith African–Americans about organ donation.Community-based programs that have usedAfrican–American transplant recipients and pa-tients awaiting transplants as spokespeople, andthat were coordinated with local community activi-ties have been associated with an increase in thenumber of African–American organ donors (11).
Among young adults, there is also some evi-dence that African–American undergraduates maybe less willing to donate their organs than othercollege students (12), but few educational pro-grams have successfully addressed this difference inopinions. Educational programs specifically forstudents may be necessary, because informationsources and opinions among students may differfrom the general adult population. For example, arecent national survey showed that only 36% ofyouths (ages 18–24) had received informationabout organ donation within the last year, com-pared to 61% of people older than 24 (9). Thirty-four percent of youths believed that racialdiscrimination prevented minority patients fromreceiving the organ transplants they need, com-pared to 27% of people older than 24 (9).
We report on a pilot test of a classroom-basedhealth education program about organ donationand transplantation to a younger population ofurban high school students. Many high schoolstudents make their first decision related to organdonation when obtaining a driver’s license. Thatdecision can be awkward or difficult for studentswho are not informed about organ donation orwho have not discussed organ donation with theirfamilies. The goal of the program was to enablestudents to make an informed personal decisionabout organ donation.
The evaluation of the health education programaddressed three questions: 1) Did the programincrease knowledge about organ donation andtransplantation? 2) Did students’ opinions on or-gan donation change? 3) Were any changes inopinion related to the classroom program? Theevaluation engendered two innovations: 1) a re-search design with a treatment and a control groupthat ultimately provided the health education pro-gram to all of the students (13), and 2) a question-naire for urban high school students that measuredknowledge and opinions about organ donation.
Methods
Research design. The research design is summa-rized in Fig. 1. To begin, a baseline survey was
293
Weaver et al.
conducted in each of the six classes at the urbanhigh school. Then, the health education programwas presented 3.5 wk (about 25 d) later. On theday of the program, the classes were divided intothree treatment group classes and three controlgroup classes. In the treatment group, the healtheducation program was presented to the studentsbefore they filled out the follow-up survey. In thecontrol group, the students filled out the follow-upsurvey before the health education program waspresented to them. The first three classes of the daywere assigned to the treatment group and the lastthree classes were assigned to the control group.Thus, any student-to-student communicationsabout the questionnaires between classes wouldhave tended to improve test results in the controlgroup and not advantage the treatment group.
The advantage of this study design is that stu-dents in both the treatment and control groupsbenefited from receiving the same health educationprogram (13). The follow-up survey in the controlgroup controlled for the effects of exposure tointervening events that may have occurred betweenthe baseline and follow-up surveys, such as televi-sion shows, news events, or simply self-educationon the subject prompted by exposure to the base-line questionnaire.
The health education program. A 40-min pro-gram was presented to six separate classes in anurban, Seattle public high school. The classroomteacher and high school principal both approvedthe health education program before it was of-fered. It included an introduction by the projectcoordinator from a community health promotionagency (African–American Community HealthNetwork), who served as the panel moderator, andthree 10-min segments: (1) medical informationdelivered by a transplant surgeon (M. Allen), 2) apresentation by a young, African–American, male
kidney transplant recipient, and 3) a presentationby a young, white, male heart transplant recipient.Each segment was followed by a question andanswer period. The medical information was anoverview of national data in five areas: 1) composi-tion of the waiting list and disparities in waitingtimes, 2) the nationalized computer informationand allocation system, 3) the prevalence of diseasesleading to transplantation, 4) success rates oftransplantation for different organs, and 5) livingdonor options for some organ transplants.
The information on composition of the waitinglist and disparities in waiting times included: 1) thedonor shortage, 2) donor-recipient matching basedon blood group, tissue typing, and organ size, 3)distribution of blood groups among minority pop-ulations in the U.S., 4) the composition of thewaiting list for different organs in terms of age,gender, and ethnicity 5), disparities in waitingtimes between people with different blood groups,and between whites and people of color.
Further information on diseases leading to theneed for an organ transplant and activity levelspre- versus post-transplant were provided duringthe patient testimonials and the question and an-swer periods.
The goal of the health education program was toprovide accurate information to enable students tomake an informed personal decision about organdonation when obtaining a driver’s license. Giventhat this was a public school setting and that theparticipants were minors, students were not askedto make binding decisions regarding donation norto sign organ donor cards.
Questionnaire. A questionnaire was developed tomeasure the effects of the intervention on the stu-dents’ knowledge of and opinions towards organdonation and transplantation. There were 15 ques-tions (see Table 2) to measure knowledge in fiveareas: 1) composition of the waiting list and dis-parities in waiting times, 2) fairness of the organdistribution system, 3) who needs a transplant, 4)success of transplantation, and 5) living donations.Note that we use the term ‘knowledge’ as used inthe field of health education to refer to a series ofquestions that measure what people know about aparticular health topic. If the respondent to thequestionnaire is relatively unfamiliar with thetopic, the answers may reflect impressions, guessesor misinformation, as well as knowledge.
Students were then asked ‘What is your opinionabout organ donation?’ and offered five possibleresponses (see Table 3). Students who did notanswer ‘I would like to become an organ donor’were asked to select one or more reasons for theiropinions from a list of concerns about donationFig. 1. Research design.
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High school education on organ donation
(see Table 4). Note that we use the term ‘opinion’rather than the term ‘attitude’, because our goalwas to categorize which of a list of reasons bestdescribed the participant’s feelings.
Analysis. Ninety-seven students completed thebaseline survey, and 100 completed the follow-upsurvey. There were 72 students, 36 students in eachgroup, who completed both the questionnaire atbaseline and at follow-up; they formed the set of‘matched’ baseline and follow-up responses thatare reported in this article. Results for the fullsample of students, including those who were ‘un-matched’, because they participated in only thebaseline or the follow-up surveys, were not sub-stantially different from the results reported here(data not presented).
Knowledge about donation was assessed atbaseline, and changes in knowledge were assessedon the ‘matched’ follow-up surveys. For individualquestions, the percentage of correct responses atbaseline of the treatment group was compared tothat of the control group using chi-square tests.Using the follow-up survey results, increases incorrect answers were measured as the number ofstudents whose answers changed from incorrect onthe baseline survey to correct on the follow-upsurvey. Increases in correct responses on the fol-low-up survey as a percentage of total responseswere also compared between the treatment andcontrol groups using chi-square tests. For all chi-square tests, the p-value of the Pearson test wasreported for all questions in which the expectedvalue of the number of observations in all of thecells was five or more. The p-value of the Fisherexact test was reported for questions in which theexpected value in one or more cells was less thanfive.
For the total score at baseline, the average per-centage of correct answers of the treatment groupwas compared to the control group using a t-testfor a comparison of means. The increase in theaverage percentage of correct answers at follow-uprelative to the baseline score of the treatmentgroup was also compared to that of the controlgroup using a t-test.
Opinions about organ donation were examinedwith a binomial logistic regression analysis. Thedependent variable was positive opinions aboutdonation, which combined two responses: ‘I wouldlike to become an organ donor’ and ‘I’m consider-ing it, but need more time to think about it.’ Eachresponse was then also analyzed separately andresults were not substantially different (data notpresented). The independent variables were se-lected based on a review of the literature, andincluded: gender, ethnicity, treatment group, total
score on knowledge questions, whether the respon-dent knew anyone who needed or had received atransplant, and whether the respondent had talkedwith his/her family about donation.
Results
Sample statistics. Statistics that describe the stu-dents in the treatment and control groups arepresented in Table 1. As shown, there were nostatistically significant differences in age, grade,gender, ethnicity, language spoken at home, orparents’ education between groups. The studentbody as a whole represented a wide diversity inethnic backgrounds. Students identified themselvesby ethnicity, and were allowed more than onechoice. Seventy-one percent of the students in thetreatment group and 58% in the control groupself-identified as non-white or of mixed ethnicity.The students of non-white or mixed ethnicity in-cluded 49% African–Americans, 17% European–Americans/white, 12% Asian–Americans, 10%American Indians, 3% Alaska Natives and 3%Middle Eastern.
Baseline sur6ey. With regard to knowledge aboutdonation and transplantation, the average totalscore of the treatment group was not significantlydifferent from that of the control group (seecolumns 2–4 of Table 2). There was a significantdifference between the intervention group and thecontrol group in the percentage of correct answersfor questions 1 and 7, but interestingly, a higherpercentage of the students in the control groupanswered the questions correctly than in the treat-ment group.
Overall, more than 70% of the students an-swered questions 1, 5, 6, 7, 9, and 10 correctly inthe baseline survey; these questions were aboutwho needs a transplant, the success of transplanta-tion, and living donations. In contrast, less than40% of all students answered questions 2, 4, and 15correctly; these questions were about compositionof the waiting list and disparities in waiting times,and fairness of the organ distribution system.
At baseline, the average total score of the whitestudents on the factual questions was significantlyhigher than the average of the students of color(see columns 2–4 of Table 3). In addition, thepercentage of students who answered questions 3,6, 12, and 13 correctly was significantly higher forwhite students than for students of color (13).Specifically, 72% of white students, compared to37% of students of color, answered that ‘African–Americans wait longer for kidney transplants thanCaucasians/whites’ was a true statement (p=0.005). Similarly, 44% of white students, compared
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Weaver et al.
Table 1. Sample statistics at baseline
Intervention Test statisticControl
Age (in years) 17 17 0.54
Grade 11 11 0.36
Gender (% female) 47 46 0.90
Race/ethnicity (%)White only 28 42 0.26Non-white/mixed ethnicity 71 58 0.25
Race/ethnicity of people who were non-white/mixed ethnicity (%)African–American 47 50 0.81Alaska Native 3 3 1.0
0.23American Indian 6 14Chinese 6 0 0.15Filipino 6 0 0.15
1.033JapaneseMiddle East 6 0 0.15South-East Asian 3 3 1.0White 17 14 0.74
0.24Language spoken at home (%)80English 92
Bi-lingual 14 8Not English 06
0.90Father’s education (%)High school or less 23 21Some college or more 66 71Don’t know 11 9
Mother’s education (%) 0.532125High school or less
Some college or more 67 76Don’t know 8 3
Sample size 36 36
to 24% of students of color, answered that ‘Asianswait longer for kidney transplants than Cau-casians/whites’ was a true statement (p=0.08).
In the baseline survey, the overall opinions ofthe treatment group were not significantly differentfrom those of the control group (not shown).There were, however, significant differences atbaseline between the white students and studentsof color (13). As shown in Table 4, at baseline 64%of the white students selected ‘I would like tobecome an organ donor’, compared to 30% of thestudents of color. Ninety-two percent of the whitestudents selected one of the two positive opinions‘I would like to become an organ donor’ or ‘I’mconsidering it, but need more time to think aboutit’, compared to 50% of students of color (p=0.00). (The total percentage of positive opinionswas less than the sum of positive opinions in Table4, because some students circled more than oneanswer.) Among the negative opinions, a higherpercentage of students of color than white studentsselected ‘It’s a good thing to do, but not for me’
(p=0.06) and ‘I don’t want to be an organ donor’(p=0.00).
The concerns most commonly chosen for disin-clination to donate in the baseline survey were:‘I’m afraid of the surgery or procedure,’ ‘I thinkthe body should remain whole after death,’ and ‘Ijust don’t want to think about dying.’ As shown inTable 5, distrust of physicians and/or the organdistribution system were cited less frequently thansome of the other concerns. In this relatively smallsample size, there were no statistical differences inthe concerns about donation between whites andstudents of color.
The regression analysis of the baseline dataconfirmed the negative relationship between non-white/mixed ethnicity and opinions about dona-tion. The dependent variable was ‘positiveopinion’, which was defined as one of the tworesponses: ‘I would like to become an organ donor’or ‘I’m considering it, but need more time to thinkabout it.’ As shown in Table 6, students of colorwere significantly less likely to have positive
296
High school education on organ donation
297
Tabl
e2.
Know
ledg
equ
estio
ns:c
ompa
rison
ofin
terv
entio
nan
dco
ntro
lgro
ups
atba
selin
ean
dfo
llow
-up
%C
orre
ctan
swer
s–
base
line
%In
crea
sein
corre
ctan
swer
son
follo
w-u
pte
st
Con
trol
Trea
tmen
tTe
stst
atist
icTe
stst
atist
icC
ontro
lTr
eatm
ent
Know
ledg
equ
estio
ns(2
)(3
)(4
)(5
)(6
)(7
)
Com
posit
ion
ofth
ew
aitin
glis
tan
ddi
spar
ities
inw
aitin
gtim
es2.
Alm
ost
one-
half
ofth
epe
rson
sw
aitin
gfo
rtra
nspl
ants
inth
eU
Sar
efro
mm
inor
itygr
oups
.(T)
0.07
3928
0.32
4222 14
0.09
473.
Afric
an–A
mer
ican
sw
ait
long
erfo
rki
dney
trans
plan
tsth
anC
auca
sians
/whi
tes.
(T)
500.
8131
170.
00**
2536
4.As
ians
wai
tlo
nger
for
kidn
eytra
nspl
ants
than
Cau
casia
ns/w
hite
s.(T
)0.
3150
Fairn
ess
ofth
edi
strib
utio
nsy
stem
2225
0.78
a72
11.A
natio
nalc
ompu
ter
syst
emm
atch
esan
ddi
strib
utes
dona
ted
orga
nsto
the
pers
ons
who
are
the
580.
22sic
kest
and
toth
ose
who
have
been
wai
ting
the
long
est.
(T)
0.13
15.R
ich
orfa
mou
spe
ople
can
rece
iveor
gans
/tiss
ues
befo
repe
ople
with
the
mos
tne
ed.(
F)36
361.
042
25
Who
need
sa
trans
plan
t1.
Icou
ldne
edan
orga
ntra
nspl
ant
atso
me
time
inm
ylife
.(T)
0.12
a89
100
0.04
*11
0 00.
01a **
676.
The
type
sof
dise
ases
that
lead
toth
ene
edfo
rtra
nspl
ant
are
unus
uala
ndra
re.(
F)81
0.18
198
190.
170.
02*
7.If
ever
yone
took
bette
rca
reof
thei
row
nhe
alth
,tra
nspl
ants
wou
ldn’
tbe
need
ed.(
F)61
860.
48a
8.M
ore
peop
ledi
efro
mau
tom
obile
acci
dent
san
dgu
nsh
otw
ound
sth
anfro
mhe
art
dise
ase.
(F)
4442
0.81
178
Succ
ess
oftra
nspl
anta
tion
311
0.35
a0.
7683
815.
Som
eca
ncer
sca
nbe
cure
dw
ithbo
nem
arro
wtra
nspl
ants
.(T)
30.
35a
8610
.Afte
ra
trans
plan
t,th
epa
tient
isne
ver
heal
thy
enou
ghto
retu
rnto
wor
kor
scho
ol.(
F)94
0.23
1112
.Tra
nspl
ant
reci
pien
tsca
nliv
em
ore
than
10ye
ars
afte
ra
trans
plan
top
erat
ion.
(T)
1.0
1475
140.
6069
0.11
13.T
hepa
tient
’sch
ance
ofsu
rvivi
nga
trans
plan
top
erat
ion
ispr
etty
low
.(F)
5364
0.34
3619
Livin
gdo
natio
ns17
0.17
0.26
a6
929.
You
can
dona
tece
rtain
orga
nsw
hile
you
are
alive
and
heal
thy.
(T)
800.
7614
.Im
aysh
orte
nm
yow
nlife
ifId
onat
ea
kidn
eyto
ape
rson
whi
leIa
mst
illal
ive.(
F)58
610.
8117
19 50.
00**
61To
tals
core
650.
3718
36Sa
mpl
esiz
e36
3636
Plea
seno
teth
atda
taar
epr
esen
ted
asth
epe
rcen
tage
ofst
uden
ts’q
uest
ionn
aire
sw
ithco
rrect
answ
ers
and
asth
ein
crea
sein
the
perc
enta
geof
corre
ctan
swer
s,ra
ther
than
abso
lute
data
.C
orre
ctan
swer
inpa
rent
hese
s:T
deno
tes
true,
and
Fde
note
sfa
lse.
For
ques
tions
1–15
,the
test
stat
istic
isth
ep-
valu
efo
ra
chi-s
quar
ete
st.F
orth
eto
tals
core
,the
test
stat
istic
isth
et-t
est
for
aco
mpa
rison
ofm
eans
.a
Den
otes
the
p-va
lue
for
the
Fish
erex
act
test
rath
erth
anth
ePe
arso
nte
st.
Anas
teris
k(*)
deno
tes
that
the
diffe
renc
eis
signi
fican
tat
0.05
orle
ssle
vel;
(**)d
enot
esth
atit
issig
nific
ant
atth
e0.
01le
vel.
Weaver et al.
298
Tabl
e3.
Know
ledg
equ
estio
ns:c
ompa
rison
ofw
hite
stud
ents
and
stud
ents
ofco
lor
atba
selin
ean
dfo
llow
-up %
Incr
ease
inco
rrect
answ
ers
onfo
llow
-up
test
%C
orre
ctan
swer
s–
base
linea
Amon
gst
uden
tsof
non-
whi
te/m
ixed
ethn
icity
Amon
gw
hite
stud
ents
Trea
tmen
tC
ontro
lTe
stst
atist
icW
hite
Non
-whi
te/m
ixed
Test
stat
istic
Trea
tmen
tC
ontro
lTe
stst
atist
ic(8
)(9
)(1
0)(4
)(7
)Kn
owle
dge
ques
tions
b(3
)(2
)(6
)(5
)
Com
posit
ion
ofth
ew
aitin
glis
tan
ddi
spar
ities
inw
aitin
gtim
es33
0.24
c32
140.
162.
4428
0.18
607
0.54
c32
190.
3272
370.
00**
3.20
4810
0.00
**24
0.40
c50
0.08
274.
44
Fairn
ess
ofth
edi
strib
utio
nsy
stem
270.
62c
2424
0.99
11.
7263
0.45
100.
09c
15.
3229
0.80
4830
0.14
6020
Who
need
sa
trans
plan
t1.
NA
160
0.11
c10
091
0.29
c0
0 0N
A28
00.
01c *
926.
630.
01**
016
100.
67c
70.
27c
300.
137.
8467
0.27
c8.
1210
1.0
5635
0.08
307
Succ
ess
oftra
nspl
anta
tion
165
0.36
c0
NA
00.
36c
7888
5.0
0.40
c5
120.
61c
10.
9687
0.41
c10
2014
0.71
c0.
50c
1312
.0
0.03
*63
880.
02c *
13.
3633
0.85
8046
0.00
**40
0
Livin
gdo
natio
ns0.
40c
9.20
100.
43c
9680
0.09
c10
0 131.
0c20
241.
0c14
.68
540.
2610
10.
01**
177
0.06
7556
0.00
**18
Tota
lsco
re25
21Sa
mpl
esiz
ed46
2515
10
For
ques
tions
1–15
,the
test
stat
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High school education on organ donation
opinions at baseline. On the other hand, among allstudents, those with higher scores on the knowledgequestions and those who had talked about dona-tion with their families were significantly morelikely to have positive opinions at baseline.
Follow-up sur6ey. Overall, the average increase inthe total knowledge score of the treatment groupwas significantly greater than the control group(pB0.05) (14).
For individual knowledge questions, Table 2shows the increase in correct responses on thefollow-up survey as a percentage of total responses.For example, the first entry in column 5 shows that42% of the students in the treatment group’s re-sponse to question 2 changed from incorrect on thebaseline survey to correct on the follow-up survey.The entry in column 6 shows that 22% of thestudents in the control group’s response to question2 changed from incorrect on the baseline survey tocorrect on the follow-up survey. The test statistic incolumn 7 measures whether or not the 42% increasewas significantly greater than the 22% increase.
As shown in Table 2, the number of correctresponses for questions 4 and 6 concerning dispari-ties in waiting times and the need for transplanta-tion increased significantly more for the treatmentgroup than for the control group. Although notstatistically significant, there was also a greater
increase in correct responses for 10 of the other 13questions for the treatment group than for thecontrol group.
In the follow-up survey, the increase in correctanswers was also compared among subsamples ofwhite students and students of color. Among whitestudents, the average increase in the total knowl-edge score was 18% for the treatment group and 1%for the control group (p=0.01). Among studentsof color, the average increase in the total score was17% for the treatment group and 7% for the controlgroup (p=0.06).
For individual knowledge questions, Table 3shows the increase in correct responses on thefollow-up survey as a percentage of total responsesfor each subsample. Interpretation is the same asfor Table 2 (above).
Among white students, the number of responsesthat changed from incorrect to correct for question13, concerning success of transplantation, was sig-nificantly greater for the treatment group than forthe control group. Although not statistically signifi-cant, there was also a greater increase in correctanswers for 8 of the other 14 questions amongwhite students in the intervention group than in thecontrol group.
Among students of color, the number of re-sponses that changed from incorrect to correct for
Table 4. Opinions about organ donation
Non-white/mixed ethnicityWhite Test statistic
BaselinePositive responses: (Baseline 1+2): (92%) (50%) 0.00**
1. I would like to become an organ donor. 62% 32% 0.01*2. I’m considering it, but need more time to think about it. 29 20 0.42
Neutral responses:3. I am undecided about organ donation. 8 23 0.19a
Negative responses: (Baseline 4+5): (0%) (34%) 0.00**4. I don’t want to become an organ donor. 0 9 0.29a
0.01a*5. It’s a good thing to do, but not for me. 270
Follow-upPositive responses: (Follow-up 1+2): (88%) (57%) 0.01*
0.00**1. I would like to become an organ donor. 23%67%2. I’m considering it, but need more time to think about it. 25 39 0.26
Neutral responses:3. I am undecided about organ donation. 8 25 0.12a
Negative responses: (Follow-up 4+5): (4%) (20%) 0.08a
4. I don’t want to become an organ donor. 0.54a400.24a1645. It’s a good thing to do, but not for me.
Sample sizeb 24 44
The percentages of positive and negative responses may exceed the sum of each response, because some students circled more than one answer.An asterisk (*) denotes that the difference was significant at the PB0.05 level. A double asterisk (**) denotes significance at the pB0.01 level.a The p-value is for the Fisher exact test rather than the Pearson test.b Sample omits one student who did not answer the question about ethnicity/race on the baseline questionnaire and three students who did not answer thequestion on opinions about organ donation on the follow-up questionnaire.
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Table 5. Concerns about organ donation at baseline among students who did not select ‘I would like to be an organ donor’
% of students with concern
White Non-white/mixed Test statisticethnicity
56% 31%1. I am afraid of the surgery or procedure. 0.252. I am worried that if donated, my organs would only go to rich people 0 3 0.78
03. It’s against my religion. 16 0.2704. I worry that doctors may not try as hard to make me well if I carry a card saying that 0 na
I want to be a donor.56 225. I think the body should remain whole after death. 0.0611 286. I just don’t want to think about dying. 0.41
7. I don’t trust doctors enough to donate organs or tissues. 11 9 1.0
9 32Sample size
Percentages may not add to 100, because students could select more than one reason.na, not applicable.
question 4, concerning disparities in waiting times,and for question 6, concerning who needs a trans-plant, was significantly greater for the treatmentgroup than for the control group. Although notstatistically significant, there was also a greaterincrease in correct answers for 10 of the other 13questions among students of color in the interventiongroup than in the control group.
In the follow-up survey, opinions about organdonation of the treatment group as a whole were notsignificantly different from those of the control group(not shown). As shown in Table 4, the opinions ofstudents of color as a whole, however, were morepositive on the follow-up survey than at baseline. Thepercentage of students of color who chose ‘I’mconsidering it, but need more time to think about it’increased from 20 to 39%. Considering the overallchanges in opinion, there was a net increase of 7%of the students of color’s responses to a positiveopinion, whereas there was no increase in positiveopinions among the white students. Positive in-creases in opinions occurred in 18% of the studentsof color, compared to no increase for white students(the majority of whose opinions were positive atbaseline) and this was statistically significant (p=0.04). At the same time, the percentage of studentsof color who selected negative responses, ‘It’s a goodthing to do, but not for me,’ and ‘I don’t want tobe an organ donor’ decreased from 34 to 20% suchthat, on the follow-up survey, the difference betweenthe frequency of these responses among the studentsof color compared to that of the white students nowdid not reach significance.
This change in opinions is also reflected in Table6 where the negative correlation between ethnicityand positive opinions on organ donation becomesless negative and loses significance on the follow-updata.
Discussion
This classroom health education program signifi-cantly improved knowledge about organ donation.In addition, we identified some aspects of organdonation about which students had relatively lessknowledge than others. At baseline, most studentsanswered questions incorrectly about composition ofthe waiting list and disparities in waiting times, andfairness of the organ distribution system. For ourongoing school project, we have subsequently revisedthe questionnaire to rewrite or eliminate questionsthat most students answered correctly at baseline.
A surprising, but important, finding was that alower percentage of students of color than whitestudents answered some of the questions aboutdisparities in waiting times correctly (13). Thus, thegroup most affected by the problem was less awarethat the problem existed. This difference may reflecta difference in knowledge between students of colorand whites. Alternatively, among students who wereequally uninformed about disparities in waitingtimes, students of color may have been less willingthan white students to guess that such disparitieswould exist for people of color. In either case, webelieve that future interventions should continue toemphasize disparities in waiting times, because in-creased awareness of the longer waiting times forkidney transplants for all minorities may encouragedonation.
It may also be appropriate to emphasize fairnessof the organ distribution system, both because of therelative lack of knowledge we have demonstrated,and because a previous study with an African–Amer-ican sample, which included high school seniors,undergraduates, and university employees, showedthat people who perceived bias in the organ distribu-tion system were significantly less willing to considerorgan donation (15).
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We also found that there was an increase inpositive opinions about organ donation amongstudents of color on the follow-up survey, but notamong white students. These changes, however,were seen in the control group, as well as in thetreatment group. It is possible that the baselinesurvey prompted some students to seek informa-tion about organ donation, independent of thehealth education program. For example, therewere fairly large increases in correct answers in thefollow-up survey (as a percentage of total re-sponses) for the questions about composition ofthe waiting list and disparities in waiting times,and fairness of the organ distribution system forboth the treatment and control groups (see Table2). Alternatively, informal spread of informationbetween classes may have accounted for some ofthe increase in knowledge in the control group.
Among the students who did not select ‘I wouldlike to become an organ donor,’ the primary con-cerns were ‘I am afraid of surgery or the proce-dure’ and ‘I think the body should remain wholeafter death.’ These findings were consistent withthe recent national survey about organ donation inwhich the subsample of older youths (ages 18–24)was significantly more likely to believe the bodyshould remain intact when buried and more con-cerned about body disfigurement than people olderthan 24 (9). These concerns differed from thosereported for African–American adults, which in-cluded distrust of the medical system, distrust ofphysicians, religious reservations, and a belief thatthe organ distribution system was unfair (16, 17).Differences in life experiences may well account forthe differences in the concerns selected by the
adolescents in our study and the adults surveyedpreviously. For example, the adolescents may havehad less exposure to inequalities in the health caresystem than the adults. It is of interest to us,however, that in our study there were also nodifferences between white students and students ofcolor in the choices of concerns associated withdisinclination to donate.
The multivariate analysis showed that studentswith higher scores on the knowledge questionswere significantly more likely to have positiveopinions about organ donation, which was consis-tent with other research with students (5). Indeed,this is one of the main arguments for providingpublic education on this subject matter. However,contrary to expectation, students who personallyknew someone who needed a transplant were notsignificantly more likely to have positive opinions.Rubens (12) reported that knowing someone whoreceived a transplant was significantly correlatedwith signing an organ donor card among Black,Hispanic, and Asian college students, as well aswhite undergraduates. Creecy and Wright (15),however, reported that among an African–Ameri-can sample, which included high school seniors,undergraduates, and university employees, willing-ness to consider donation was correlated only withspecifically knowing an African–American whohad received an organ transplant.
The main limitation of the pilot test was therelatively small sample size; there were only threeclasses in each group and 36 students who com-pleted the baseline and follow-up questionnaires ineach group. In the following year, we have ex-panded the study to three high schools and conse-
Table 6. Multivariate analysis of positive opinions about organ donation
Baseline Follow-up
3.60* 7.24**Total score on knowledge questions(1.84) (2.51)
−1.22Experimental group (1= intervention) −0.57(0.65) (0.81)
1.210.55Know anyone who needed a transplant (1=yes)(0.69) (0.82)
Talked about donation with family (1=yes) 1.44* 1.24(0.66) (0.70)
−1.01−0.72Gender (1=male)(0.73)(0.65)
Race/ethnicity (1=non-white/mixed ethnicity) −2.07* −0.47(0.86) (0.86)
−4.22*−0.37Constant(1.60) (2.04)
7272Sample size0.000.00Chi-square
8078Percentage of responses correctly predicted
Standard errors are reported in parentheses.An asterisk (*) denotes significance at the 0.05 level and (**) denotes significance at the 0.01 level.
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quently to a larger number of classes and stu-dents.
In the future, it may be appropriate to addinformation about other aspects of organ dona-tion to the educational program, such as encour-aging discussions with family members on thesubject of donation. Supporting this recommen-dation, our evaluation is the first research to re-port a significant, positive relationship betweentalking with family members about donation andpositive opinions about donation. It is currentlyrecommended that public programs focus on dis-cussions with family members rather than donorcards (18). Family members are generally askedto consent to donate the organs of a deceasedrelative, even though donor cards and other di-rectives are sufficient legally (8, 19, 20). Discus-sions with family members about donation mayhave a special advantage over donor cards andother directives for people of color, because in-formation about willingness to donate is keptwithin the family (21). Previous studies haveshown that African–Americans may be especiallyconcerned about premature death (10, 21), andso may be more comfortable with an informaldiscussion among family members than with offi-cial documentation.
Beyond the study, we are also working to insti-tutionalize the health education program in Seat-tle public high schools. Teachers and principalsin high schools that offer driver’s education aregenuinely interested in educating students aboutorgan donation prior to that first decision. Along-term goal of this program is to develop acurriculum that could be replicated once a yearby the teachers themselves.
Conclusions
This evaluation of the pilot test provided encour-aging evidence that the school-based health edu-cation program affected knowledge about organdonation, and that the opinions of high schoolstudents of color were responsive to the interven-tion or perhaps a less intensive effort. In addi-tion, the multivariate analysis showed thatknowledge about donation increased the likeli-hood that students had positive opinions aboutdonation, and that discussions with family mem-bers also increased the likelihood that studentshad positive opinions. These findings suggest thatopinions on donation among adolescents are stillopen to change and emphasize the potential im-portance of education on this subject at the highschool level or earlier.
AcknowledgementsThis research was supported by the National Institute ofAllergy and Infectious Diseases, grant R18 AI40674. Wewould like to acknowledge the advice, ideas, and supportof Lynn French, J.D., M.H.A., and James Hurd, M.H.A.,leaders of the African–American Community Health Net-work, our community partners in this pilot project. Wewould also like to thank Anthony Flor, the classroomteacher, and Charles Walker, Principal, for their gracioussupport of this project which allowed it to take place.Finally, we would like to thank the two anonymous review-ers of this article for their insightful comments.
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