Academic Edi o s: An onino Ca bone
and Da id Sallman
Recei ed: 4 Oc obe 2025
Re ised: 31 Oc obe 2025
Accep ed: 12 No embe 2025
Published: 18 No embe 2025
Ci a ion: Ikediashi, B.G.; Baglo-
Agbodande, T.; Quenum, B.; Michel,
G. Heal h Li e acy and Disease
Knowledge in Adolescen s and Young
Adul s wi h SCD in Benin. Hema o
2025,6, 41. h ps://doi.o g/
10.3390/hema o6040041
Copy igh : © 2025 by he au ho s.
Licensee MDPI, Basel, Swi ze land.
This a icle is an open access a icle
dis ibu ed unde he e ms and
condi ions o he C ea i e Commons
A ibu ion (CC BY) license
(h ps://c ea i ecommons.o g/
licenses/by/4.0/).
A icle
Heal h Li e acy and Disease Knowledge in Adolescen s and
Young Adul s wi h SCD in Benin
Bona en u e G. Ikediashi 1,2,* , Ta iana Baglo-Agbodande 3,4, Be nice Quenum 5and Gisela Michel 1
1Facul y o Heal h Sciences and Medicine, Uni e si y o Luce ne, 6005 Luce ne, Swi ze land
2Swiss School o Public Heal h, 8001 Zu ich, Swi ze land
3
Clinique Uni e si ai e des Maladies du Sang (CUMAS), Cen e Na ional Hospi alie Uni e si ai e Hube K.
MAGA (CNHU-HKM), Co onou 01 BP 526, Benin
4Facul é des Sciences de la San é de Co onou, Uni e si é d’Abomey Cala i, Co onou 01 BP 526, Benin
5Clinique Uni e si ai e de P ise en Cha ge de la D epanocy ose (CUPD), Cen e Na ional Hospi alie
Uni e si ai e Hube K. MAGA (CNHU-HKM), Co onou 01 BP 526, Benin
*Co espondence: [email p o ec ed]
Abs ac
In oduc ion: Disease knowledge and heal h li e acy a e impo an heal h compe en-
cies ha indi iduals wi h ch onic condi ions like Sickle Cell Disease (SCD) need o sel -
managemen . This s udy aimed o: (I) desc ibe and compa e SCD knowledge and heal h
li e acy le els in adolescen s and young adul s (AYAs) wi h SCD in Benin; (II) examine
associa ions be ween geno ype, socio-demog aphic ac o s, heal h li e acy, and SCD knowl-
edge; and (III) examine he associa ions be ween pa ien s SCD knowledge, heal h li e acy,
socio-demog aphic ac o s, and (a) equency o hospi alisa ions and (b) equency o occu -
ence o pain ul episodes. Me hods: AYAs aged 14 o 25 yea s wi h SCD a ending ou ine
consul a ions a wo Benin clinics— he Na ional Sickle Cell Disease Cen e (CPMI-NFED)
and he Haema ology clinic o he Uni e si y Teaching Hospi al (CUMAS), comple ed a
ques ionnai e assessing SCD knowledge and heal h li e acy (Heal h Li e acy Measu e o
Adolescen s, HELMA). Resul s: Mos pa icipan s had inadequa e heal h li e acy: 72.1%
a CPMI-NFED and 82.1% a CUMAS, wi h no signi ican di e ences be ween cen es
( = 1.642, p= 0.200). CPMI-NFED pa icipan s had highe SCD knowledge han hose a
CUMAS ( = 4.303, p= 0.038). Highe SCD knowledge (
β
= 0.466; p< 0.001) and heal h
li e acy (
β
= 5.081; p< 0.001) we e associa ed wi h olde age. Te ia y-le el educa ion was
associa ed wi h highe heal h li e acy (
β
= 4.286; p= 0.023). Pa icipan s wi h high SCD
knowledge expe ienced ewe pain ul episodes (IRR = 0.777, p= 0.046), bu no signi ican
di e ences in hospi al admissions (IRR = 0.764, p= 0.162). Conclusions: Inadequa e heal h
li e acy is common in AYAs wi h SCD in Benin. Ha ing high SCD knowledge may ha e an
impac on he occu ence o pain ul episodes.
Keywo ds: heal h li e acy; disease knowledge; sickle cell disease; adolescen s and
young adul s
1. In oduc ion
Sickle Cell Disease (SCD) a ec s millions o people globally and is a majo global heal h
challenge [
1
]. O e he las decade, he numbe o people li ing wi h SCD has conside ably
inc eased. This inc ease is mo e p onounced in he Ca ibbean and Sub-Saha an A ica, and
can be explained by ac o s such as popula ion g ow h and imp o ed su i al a es in ea ly
ages [1].
Hema o 2025,6, 41 h ps://doi.o g/10.3390/hema o6040041
Hema o 2025,6, 41 2 o 13
SCD is a ch onic gene ic blood diso de cha ac e ised by he p esence o abno mal
haemoglobin, known as haemoglobin S o HbS, in ed blood cells. Haemoglobin ca ies
oxygen h oughou he body [
2
]. Abno mal haemoglobin p oduces de o med ed blood
cells, which g ow igid and ake a sickle o c escen shape. These de o med ed blood
cells can block small blood essels and impede no mal blood low, causing pain ul aso-
occlusi e c ises ha o en necessi a e eme gency hospi al isi s and hospi aliza ions [
3
,
4
].
In addi ion, he blockages caused by hese sickle o c escen -shaped cells can also cause
anaemia, o gan damage (pa icula ly in he spleen, kidneys, and lungs) [
5
], o impai ed
immune unc ion and inc ease suscep ibili y o in ec ions [
6
]. These complica ions p esen
signi ican heal h challenges o people li ing wi h he disease.
To make app op ia e decisions, i is impo an ha adolescen s and young adul s wi h
SCD each an adequa e le el o heal h li e acy, de ined as hei abili y o ob ain, unde s and,
and e ec i ely use basic heal h in o ma ion [
7
]. To g adually assume g ea e esponsibili y
in he managemen o hei own heal h, adolescen s and young adul s need disease-speci ic
knowledge o success ully ake o e he owne ship o hei ch onic condi ions [
8
]. P o iding
adolescen s wi h a comp ehensi e unde s anding o hei disease, i s symp oms, ea men
op ions, and po en ial complica ions will empowe hem o ac i ely pa icipa e in hei own
heal hca e, inc ease hei abili y o sel -manage, and imp o e hei heal h ou comes [
9
]. In
addi ion o heal h li e acy, disease-speci ic knowledge plays a pi o al ole in he success ul
managemen o ch onic condi ions. Ha ing a comp ehensi e unde s anding o one’s
speci ic disease, i s symp oms, ea men op ions, and po en ial complica ions empowe s
indi iduals o ac i ely pa icipa e in hei heal hca e jou ney, enhances hei abili y o
sel -managemen , and con ibu es o o e all heal h ou comes [
10
,
11
]. Despi e he g owing
ecogni ion o he impo ance o heal h li e acy and disease knowledge o heal h ou comes
in ch onic diseases, ew s udies ha e examined his in SCD [
8
,
11
,
12
]. A ew s udies ha e
examined heal h li e acy in adolescen s and he ela ionship be ween ca egi e ’s heal h
li e acy and SCD knowledge and heal h ou comes in child en [
12
,
13
]. S udies e alua ing
he ela ionship be ween heal h li e acy, disease knowledge, and heal h ou comes in an
adolescen popula ion wi h SCD a e cu en ly lacking.
In Co onou, Benin, he managemen o SCD is majo ly done in wo di e en ins i u-
ions. The i s is he Na ional Sickle Cell Disease Cen e o Benin (New-Bo n Sc eening
o Sickle Cell Disease and Comp ehensi e Clinical Ca e P og ams, CPMI-NFED). This
ins i u ion plays a pi o al ole in p o iding ca e and suppo o p egnan women, nu sing
mo he s, child en, and adolescen s wi h SCD. Child en and adolescen s managed a his
cen e a e en olled be ween he ages o 0 and 7 yea s and a e ea ed he e un il hey be-
come adul s. The ins i u ion bene i s om special in e en ion unding om he coun y’s
heal h depa men , making i possible o he pa ien s o bene i om subsidised ea men s.
Pa ien s a e usually accompanied by specialised nu ses, who ake ex a ime o p o ide
in o ma ion and educa ion o he pa ien s and hei pa en s when hey a e en olled. In
addi ion, pe iodic in o ma ion p og ammes o he SCD pa ien s and hei pa en s whe e
opics ele an o li ing wi h SCD a e discussed a e o ganised. The second majo ins i u ion
is he Haema ology clinic o he Uni e si y Teaching Hospi al (CUMAS) whe e all blood
diseases including SCD a e managed. A his clinic, bo h adolescen and adul pa ien s a e
ea ed. Pa ien s who a e ea ed a his uni do no bene i om any subsidised ea men s,
no om any o he ini ia i es. Because SCD knowledge and heal h li e acy ha e no been
e alua ed in he SCD popula ion in Benin, i is no known i he e a e di e ences be ween
hese wo cen es.
This s udy aimed o explo e he ela ionships be ween heal h li e acy, disease knowl-
edge, and socio-demog aphic ac o s in his speci ic popula ion a hese wo cen es. The
speci ic aims o he s udy we e o: (I) desc ibe and compa e SCD knowledge and heal h
Hema o 2025,6, 41 3 o 13
li e acy le els in adolescen s and young adul s (AYA) wi h SCD managed a bo h he
CPMI-NFED and CUMAS in Benin, (II) examine associa ions be ween geno ype, socio-
demog aphic ac o s, heal h li e acy, and SCD knowledge, and (III) examine he associa ions
be ween pa ien s SCD knowledge, heal h li e acy, socio-demog aphic ac o s, and (a) e-
quency o hospi alisa ions and (b) equency o occu ence o pain ul episodes.
2. Ma e ials and Me hods
2.1. Sample and P ocedu e
We used a c oss-sec ional design and con enience sampling. Eligible pa icipan s we e
SCD pa ien s ea ed a he CPMI-NFED and he CUMAS. They we e conside ed eligible
o he s udy i hey we e: (I) aged 14 o 25 yea s a he ime o he s udy, and (II) we e able
o ead and w i e in F ench. Pa ien s we e in o med abou he s udy by a esea ch assis an
while wai ing o hei ou ine consul a ion. Those who indica ed in e es in pa icipa ing
in he s udy we e hen di ec ed o a wai ing oom whe e hey we e in o med abou he
s udy in de ail. They we e hen handed an in o ma ion no e ou lining he s udy de ails
and he esea che ’s con ac in o ma ion. Subsequen ly, hose who ag eed o pa icipa e
signed he in o med consen o m be o e comple ing he ques ionnai es. Fo hose who
we e less han 18 yea s o age, in o med consen was ob ained om hei accompanying
pa en o gua dian while hey p o ided w i en assen o pa icipa e in he s udy.
2.2. Measu es
2.2.1. SCD Knowledge
SCD knowledge was assessed using an SCD knowledge ques ionnai e ha was lo-
cally de eloped in collabo a ion wi h SCD specialis s. I was designed o co e opics
conside ed ele an , including gene al SCD knowledge, disease managemen , iden i ica-
ion o symp oms, and p e en ion o complica ions. While he ins umen has no been
psychome ically alida ed, i was in ended o p o ide explo a o y baseline da a on dis-
ease knowledge among adolescen s and young adul s wi h SCD. This app oach allowed
he s udy o cap u e con ex -speci ic insigh s ha can guide he de elopmen o u u e
alida ed ools. The SCD knowledge ques ionnai e ea u ed a o al o 13 ques ions, each
ca ying a sco e o 1 poin o a co ec answe . Among hese ques ions, one p esen ed ou
answe op ions, while ano he included i e answe op ions, wi h each co ec esponse
ea ning 1 poin . As a esul , pa icipan s could achie e a maximum sco e o 20 poin s in
he disease knowledge ques ionnai e. To e alua e SCD knowledge le el, we conside ed
70% o co ec answe s as indica i e o high knowledge abou he disease.
2.2.2. Heal h Li e acy
The Heal h Li e acy Measu emen o Adolescen s (HELMA) ques ionnai e is a com-
p ehensi e ins umen designed o assess heal h li e acy ac oss a ious domains. In his
s udy, we used he F ench e sion o he HELMA, which we ha e p e iously e alua ed
and epo ed in a published pape [
13
]. The HELMA ques ionnai e comp ises 44 i ems
ca ego ised in o eigh domains. Access, Reading, Unde s anding, App aisal, Use, Com-
munica ion, Sel -e icacy, and Nume acy. Pa icipan s esponded o i ems 1–41 using a
i e-poin Like scale (Ne e = 1, Ra ely = 2, Some imes = 3, Usually = 4, Always = 5),
while he las h ee i ems unde Nume acy in ol ed ma hema ical calcula ions ela ed o
nu i ional elemen s in a milk con aine and pa ame e s o compu ing Body Mass Index
(BMI). The sco ing sys em o nume acy di e ed om he o he i ems, assigning a sco e o 1
o inco ec answe s and 5 o co ec answe s. The aw sco es om all domains we e hen
summed up and linea ly ans e ed o a sco e anging om 0 o 100, p o iding he o al
heal h li e acy sco e. The ca ego isa ion o HELMA sco es includes Inadequa e (0–50.0),
Hema o 2025,6, 41 4 o 13
P oblema ic (50.1–66.0), Su icien (66.1–84.0), and Excellen (84.1–100). This classi ica ion,
es ablished by he au ho s o he HELMA ool, combines ‘Inadequa e’ and ‘P oblema ic’
sco es in o ‘inadequa e’ heal h li e acy, while ‘Su icien ’ and ‘Excellen ’ sco es a e g ouped
as ‘adequa e’ heal h li e acy [14].
2.2.3. Heal h Ou comes
Two ou come measu es o in e es we e collec ed: he numbe o hospi al admissions
(de ined by hospi al s ays ha included a leas an o e nigh s ay) and he equency o
occu ence o pain ul episodes (de ined by pain ha equi ed medica ion o eme gency
hospi al isi s) in he las yea . Bo h ou come measu es we e sel - epo ed by pa icipan s.
Socio-demog aphic cha ac e is ics included he age, sex, le el o educa ion, pa en s’
educa ion le el, and pa en al employmen s a us (sala ied employmen , sel -employed, no
employed). Clinical cha ac e is ics included in o ma ion on he geno ype o he disease:
βS/βS, βS/βC and βS/β0.
2.3. Analyses
All s a is ical analyses we e ca ied ou using S a a 17, College S a ion, TX, USA,
he R S a is ical So wa e ( e sion 4.0.2, R Co e Team, 2020) and he S a is ical Package
o he Social Sciences (SPSS
®
) e sion 25 (IBM Co p., A monk, NY, USA). Means and
s anda d de ia ions we e summa ised o he con inuous a iables, while equencies
we e summa ised o he ca ego ical a iables. An independen sample - es was used o
compa e he mean heal h li e acy and SCD knowledge sco es be ween he CU-MAS and
CPMI-NFED cen es. A chi-squa e es o p opo ions was used o compa e he p opo ions
o inadequa e s. adequa e heal h li e acy le els and high s. low SCD knowledge le els
in bo h cen es. Simple linea eg ession was used o examine he ela ionships be ween
heal h li e acy and SCD knowledge as ou come a iables and he pa icipan s’ backg ound
cha ac e is ics as p edic o a iables. Poisson eg ession models we e conduc ed o examine
he associa ions be ween hospi al admissions and pain ul episodes as ou come a iables
and heal h li e acy and SCD knowledge as p edic o s while con olling o pa icipan s
clinical and sociodemog aphic cha ac e is ics.
3. Resul s
The s udy sample included 131 adolescen s and young adul s wi h a mean age o 17.
5 yea s ( ange: om 14–24 yea s). The e we e 66 males (50.4%) Mos o he pa ien s had
β
S/
β
S geno ype (80.9%), a his o y o ans usion (89.3%), and seconda y le el educa ion.
Desc ip i e s a is ics a e p esen ed in Table 1.
Table 1. Backg ound Cha ac e is ics o pa icipan s.
Mean SD
Age 17.5 2.5
N %
SCD Type
βS/βS106 80.9
βS/βC & βS/β025 19.1
T ans usion His o y
Yes 117 89.3
No 14 10.7
T ea men Cen e
CUMAS 86 65.6
CPMI-NFED 45 34.4
Hema o 2025,6, 41 5 o 13
Table 1. Con .
Mean SD
Sex
Male 66 50.4
Female 65 49.6
Educa ion Le el
Seconda y 78 59.5
Te ia y 53 40.5
Fa he ’s Educa ion Le el
P ima y 57 43.5
Seconda y 60 45.8
e ia y 14 10.7
Mo he ’s Educa ion Le el
P ima y 31 23.7
Seconda y 65 49.6
Te ia y 35 26.7
Fa he ’s Employmen
Sala ied 57 43.5
Sel -employed 67 51.2
Unemployed 6 5.3
Mo he ’s Employmen
Sala ied 36 27.5
Sel -employed 82 62.6
Unemployed 13 9.9
Heal h Li e acy
Inadequa e 99 75.6
Adequa e 32 24.4
Disease Knowledge
Low 54 41.2
High 77 58.8
The mean heal h li e acy sco e o he pa icipan s ec ui ed om he CUMAS
g oup (mean = 56.0, SD = 19.6) did no di e signi ican ly om he CPMI-NFED g oup
(mean = 55.5, SD = 15.5; p= 0.901). No signi ican di e ences we e ound in he p opo ion
o pa icipan s wi h inadequa e heal h li e acy le els in bo h he CUMAS cen e and he
CPMI-NFED cen e (Figu e 1; = 1.642, p= 0.200). Knowledge gaps we e iden i ied o
an ibio ic use (83%), s oke (51%), and e inopa hies (46%) (Figu e 2).
Rega ding aim II, only age was ound o be signi ican ly associa ed wi h SCD knowl-
edge (
β
= 0.466; p=< 0.001) and heal h li e acy (
β
= 5.081; p=< 0.001). SCD knowledge and
li e acy sco es we e highe in olde pa icipan s (Table 2).
Table 2. Associa ion be ween SCD Knowledge, Heal h Li e acy and Socio-demog aphic cha ac e is ics.
SCD Knowledge Heal h Li e acy
β
pValue
CI βpValue CI
Age 0.466 0.000 [0.263, 0.670] 5.810 0.000 [5.084, 6.535]
Female −0.284 0.552 [−1.227, 0.659] 0.052 0.976 [−3.316, 3.420]
Te ia y
( e : seconda y educa ion)
−0.071 0.892 [−1.105, 0.093] 4.286 0.023 [0.593, 7.978]
Hema o 2025,6, 41 6 o 13
Table 2. Con .
SCD Knowledge Heal h Li e acy
β
pValue
CI βpValue CI
Fa he ’s Educa ion Le el
( e : e ia y educa ion)
Seconda y 0.273 0.586 [−0.717, 1.263] 3.434 0.057 [−0.101, 6.970]
P ima y 0.017 0.984 [−1.659, 1.694] 2.917 0.337 [−3.070, 8.904]
Mo he Educa ion Le el
( e : e ia y educa ion)
Seconda y 0.963 0.125 [−0.270, 2.195] −3.819 0.088 [−8.221, 0.583]
P ima y 0.587 0.408 [−0.812, 1.985] 0.467 0.853 [−4.528, 5.462]
Fa he ’s Employmen S a us
( e : employed)
Sel -employed −0.094 0.842 [−1.031, 0.842] 1.785 0.293 [−1.562, 5.132]
Unemployed −0.346 0.751 [−2.501, 1.809] 3.864 0.322 [−3.834, 11.561]
Mo he ’s employmen S a us
( e : employed)
Sel -employed 0.569 0.314 [−0.546, 1.685] −0.263 0.896 [−4.247, 3.72]
Unemployed −1.027 0.254 [−2.801, 0.747] −2.188 0.495 [−8.523, 4.147]
Signi ican alues a e in bold. CI = Con idence In e al.
Figu e 1. P opo ion o pa ien s wi h high s. low disease knowledge and high s. low heal h li e acy
le els acco ding o ea men cen es.
Hema o 2025,6, 41 7 o 13
5
4
7
29
27
8
12
28
49
11
40
33
38
29
44
31
21
4
37
83
95
96
93
71
73
92
88
72
51
89
60
67
62
71
56
69
79
96
63
17
0 102030405060708090100
He edi a y
D inking wa e
Physical e o s
Clo hing
Sun exposu e
Rou ine consul a ion
Vaccines
Acu e Ches Synd ome
S oke
Anemia
Re inopa hy
Fe e
Re a ded g ow h
Paleness
Headache
Yellow eyes
Mala ia
Folic acid
Complica ions
An ibio ics
W ong Righ
%
Figu e 2. Pe cen age o co ec esponses o he SCDK ques ionnai e.
To add ess aim III, we analysed he associa ion be ween he occu ence o pain ul
episodes (Table 3), and equency o hospi al admissions (Table 4), as ou come a iables
wi h SCD knowledge and heal h li e acy while adjus ing o pa icipan ’s cha ac e is-
ics. Pa icipan s wi h high SCD knowledge epo ed ewe pain ul episode occu ences
(IRR = 0.777, p= 0.046). Simila ly, hough no s a is ically signi ican , pa icipan s wi h
adequa e heal h li e acy le els had ewe pain ul episode occu ences compa ed o hose
wi h inadequa e heal h li e acy le els (IRR = 0.662, p= 0.075).
Hema o 2025,6, 41 8 o 13
Table 3. Associa ion be ween pain ul episodes, and SCD knowledge and heal h li e acy.
IRR
pValue
CI IRR pValue CI
High SCD knowledge 0.777 0.046 [0.607, 0.995]
Adequa e Heal h Li e acy 0.662 0.075 [0.42, 1.043]
Age 0.974 0.397 [0.917, 1.035] 1.016 0.704 [0.935, 1.105]
Female 1.130 0.350 [0.875, 1.459] 1.189 0.192 [0.917, 1.543]
Te ia y Educa ion 0.964 0.804 [0.725, 1.283] 0.934 0.640 [0.701, 1.244]
Fa he ’s Educa ion
Le el
Seconda y 0.921 0.534 [0.709, 1.195] 0.904 0.447 [0.697, 1.172]
P ima y 0.842 0.454 [0.538, 1.320] 0.847 0.467 [0.542, 1.325]
Mo he Educa ion
Le el
Seconda y 1.063 0.717 [0.763, 1.482] 0.994 0.971 [0.713, 1.386]
P ima y 1.077 0.691 [0.747, 1.554] 1.063 0.745 [0.736, 1.536]
Fa he ’s Employmen S a us
Sel -employed 1.019 0.885 [0.794, 1.306] 1.015 0.905 [0.793, 1.300]
Unemployed 0.703 0.308 [0.358, 1.383] 0.697 0.294 [0.355, 1.368]
Mo he ’s employmen S a us
Sel -employed 1.097 0.542 [0.815, 1.477] 1.094 0.554 [0.813, 1.471]
Unemployed 1.212 0.427 [0.755, 1.946] 1.210 0.425 [0.757, 1.934]
T ans usion his o y 1.158 0.425 [0.807, 1.662] 1.227 0.266 [0.855, 1.760]
SCD Type 0.989 0.946 [0.716, 1.366] 1.015 0.929 [0.735, 1.401]
IRR = incidence a e a io: Signi ican alues a e in bold. CI = Con idence In e al.
Table 4. Associa ion be ween hospi al admission and SCD knowledge and heal h li e acy.
IRR
pValue
CI IRR pValue CI
High SCD knowledge 0.764 0.162 [0.524, 1.114]
Adequa e Heal h Li e acy 1.244 0.528 [0.632, 2.448]
Age 0.982 0.702 [0.896, 1.076] 0.939 0.345 [0.825, 1.070]
Female 0.907 0.618 [0.618, 1.331] 0.893 0.572 [0.604, 1.321]
Te ia y Educa ion 0.968 0.880 [0.634, 1.486] 0.991 0.965 [0.645, 1.521]
Fa he ’s Educa ion Le el
Seconda y 1.023 0.909 [0.689, 1.521] 1.009 0.966 [0.680, 1.497]
P ima y 1.012 0.971 [0.525, 1.950] 1.076 0.829 [0.555, 2.085]
Mo he Educa ion Le el
Seconda y 1.426 0.195 [0.834, 2.436] 1.396 0.225 [0.814, 2.393]
P ima y 1.711 0.067 [0.964, 3.037] 1.683 0.076 [0.947, 2.992]
Fa he ’s Employmen S a us
Sel -employed 1.194 0.363 [0.815, 1.749] 1.203 0.340 [0.823, 1.759]
Unemployed 0.340 0.145 [0.080, 1.451] 0.353 0.159 [0.083, 1.504]
Mo he ’s employmen S a us
Sel -employed 0.901 0.649 [0.577, 1.409] 0.897 0.633 [0.575, 1.400]
Unemployed 0.807 0.591 [0.369, 1.766] 0.854 0.692 [0.391, 1.866]
T ans usion his o y 0.979 0.943 [0.549, 1.746] 1.003 0.992 [0.563, 1.786]
SCD Type 0.849 0.550 [0.497, 1.451] 0.834 0.507 [0.487, 1.427]
IRR = incidence a e a io: CI = Con idence In e al.
4. Discussion
Ou indings show ha mos pa icipan s had inadequa e heal h li e acy le els i -
espec i e o he ea men cen e (CPMU-NFED o CUMAS). Howe e , pa icipan s a
CPMI-NFED had highe le els o SCD knowledge compa ed o hose a CUMAS. Heal h
li e acy and SCD knowledge we e highe in olde pa ien s. In addi ion, heal h li e acy
was highe in pa icipan s wi h e ia y-le el educa ion. Heal h li e acy was no associa ed
Hema o 2025,6, 41 9 o 13
wi h pain ul episodes and hospi al admissions a e adjus ing o demog aphic and clinical
cha ac e is ics. Despi e ha ing ewe pain ul episodes, pa ien s wi h high SCD knowledge
le els showed no signi ican di e ences in hospi al admissions.
To ou knowledge, his s udy ep esen s a i s a emp o examine heal h li e acy, dis-
ease knowledge, and i s impac s on key heal h ou comes in SCD in Benin. Fo ou i s aim,
we desc ibed and compa ed SCD knowledge and heal h li e acy le els among adolescen s
and young adul s (AYA) ecei ing ca e a wo heal hca e cen es in Benin, which di e in
unding ecei ed om he s a e. We ound ha mos pa icipan s exhibi ed inadequa e
heal h li e acy le els, ega dless o he ea men cen e (CPMI-NFED o CUMAS). Com-
pa isons wi h da a om ou p e iously published alida ion s udy indica e ha low heal h
li e acy is no unique o indi iduals wi h SCD, bu e lec s b oade challenges obse ed
among AYA in he gene al popula ion in Benin [
13
]. This is consis en wi h indings om
s udies on heal h li e acy conduc ed in adolescen s wi h SCD in he US [
8
,
15
]. Al hough
hese s udies used di e en heal h li e acy ins umen s, he REALM-Teen and Newes Vi al
Sign (NVS), hey bo h ound a high p e alence o inadequa e heal h li e acy in his popula-
ion. Howe e , while heal h li e acy le els did no di e signi ican ly be ween pa icipan s
om he CPMI-NFED and CUMAS cen es, we obse ed di e ences in hei SCD knowl-
edge. This a ia ion may e lec he di e ences in he ca e managemen a bo h cen es.
Al hough he wo cen es di e in hei le el o s a e unding, he compa ison ex ends
beyond subsidised e sus non-subsidised ca e. These ins i u ions di e in o ganisa ional
s uc u e, esou ce a ailabili y, and app oach o pa ien educa ion. CPMI-NFED in eg a es
s uc u ed educa ional ac i i ies, while CUMAS p o ides ou ine medical ollow-up wi h
no o malised in o ma ion sessions. This inding sugges s ha ins i u ional p ac ices may
play an impo an ole in shaping disease-speci ic knowledge. Examining bo h cen es
p o ides con ex ual insigh s in o how a ia ions in ins i u ional p ac ices and esou ces
may in luence pa ien s’ disease knowledge and heal h li e acy. Ou esul s unde sco e
he impo ance o ailo ed educa ional ini ia i es o enhance SCD knowledge among AYA
in Benin.
In p io s udies in ol ing adolescen s and young adul s in a gene al popula ion, heal h
li e acy has been consis en ly associa ed wi h sociodemog aphic ac o s such as educa ion,
pa en al educa ion le el, pa en al employmen s a us, age [
16
] and sex [
16
,
17
]. S udies
conduc ed in he AYA SCD popula ion epo simila indings o age and educa ional
le el [
15
,
18
,
19
], bu no o sex [
15
]. In ou s udy, we ound ha olde indi iduals and hose
wi h e ia y-le el educa ion had highe heal h li e acy le els. Howe e , no associa ions
we e ond be ween sex, pa en al educa ion le els, pa en al occupa ion, and heal h li e acy
le els. Fac o s in luencing heal h li e acy le els may a y ac oss di e en heal h condi ions
and pa ien popula ions. This unde sco es he impo ance o ailo ed in e en ions and
a ge ed s a egies o add ess he unique needs o indi iduals a ec ed by SCD.
Heal h li e acy is impo an in assessing heal h in o ma ion and is also posi i ely
ela ed o an unde s anding o he ea men [
20
]. P e ious esea ch has shown ha
heal h li e acy is co ela ed wi h hospi al isi s and hospi al admissions in o he ch onic
condi ions [
21
–
24
]. We ound no signi ican ela ionships be ween heal h li e acy and
hospi al admissions. This inding is howe e consis en wi h he indings o he ew s udies
ha ha e e alua ed he ela ionship be ween heal h li e acy and hospi al admissions in
SCD [
12
,
18
]. Hospi al admissions in SCD a e o en igge ed by acu e e en s such as
se e e pain c ises o in ec ions, which may no be ully p e en able h ough li e acy o
knowledge alone [
25
]. We ound signi ican gaps in he knowledge o he complica ions,
app op ia e esponses o SCD signs, and he use o an ibio ics. Pa icipan s demons a ed
a pa icula ly low awa eness o se ious complica ions such as s oke and e inopa hies,
which a e c i ical o p e en long- e m damage in SCD pa ien s [
26
]. Simila ly, essen ial
