Preventive Medicine 55 (2012) 251–253

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Preventive Medicine
journal homepage: www.elsevier.com/locate/ypmed

Brief Original Report

Misconceptions about sickle cell disease (SCD) among lay people in Benin
Ornheilia Zounon a, Ludovic Anani b, Sèmiou Latoundji b, Paul Clay Sorum c,⁎, Etienne Mullet d
a
Mirail University, Toulouse, France
b
University of Abomey-Calavi, Abomey, Benin
c
Albany Medical College, Albany, New York, USA
d
Institute of Advanced Studies (EPHE), Paris, France

a r t i c l e i n f o a b s t r a c t

Available online 10 July 2012 Objective. The aim of this study was to determine the accuracy of people's ideas in Benin about the
common affliction of sickle cell disease (SCD).
Keywords: Methods. A questionnaire asking for the degree of agreement with 111 statements about SCD was given in
Public knowledge 2011 to 6 physicians (the gold standard) and 178 lay people living in Cotonou, Benin. A misconception was
Prevention
defined as a statistically significant (p b 0.001) deviation of at least 2.5 points on the 0–10 response scale of
Sickle cell disease
Benin
the lay people's mean response from that of the physicians.
Results. Lay people tended not to be sufficiently aware that SCD is a hereditary illness, that a genetic test
can detect the gene, that having it does not automatically lead to illness, that SCD may induce severe kidney,
lung, heart, or cerebrovascular disorders, and that SCD cannot be cured by traditional healers. These miscon-
ceptions were greater among those who knew they had SCD or carried the gene than among those who knew
they did not.
Conclusion. Major efforts are needed to overcome the educational and cultural barriers to accurate under-
standing of how to prevent and treat SCD among lay people in Benin, especially among those at greatest risk.
© 2012 Elsevier Inc. All rights reserved.

Introduction Methods

Sickle cell disease (SCD) is a major problem in sub-Saharan Africa. In
the Republic of Benin its incidence was estimated in 2008 at 4% (Anani
et al., 2008). Since a child develops SCD only by inheriting a defective
gene from both parents, people who know their own and their actual or
potential partner's genetic status can, in theory, make more informed de-
cisions about marriage and child-bearing. In addition, if SCD is diagnosed
early, its complications can be reduced.
Informed decision making presupposes adequate knowledge.
According to Rahimy et al. (2003), people in Benin “believe that the dis-
ease is caused by an evil spirit gnawing on their child's bones and, for
treatment, seek the help of ‘Marabou’ [a traditional healer]”. But all empir-
ical studies have been conducted in Nigeria, where people's knowledge of
SCD has been variable (Adewuyi, 2000; Famuyiwa and Aina, 2009;
Moronkola and Fadairo, 2006). The present study examined the knowl-
edge of lay people in Benin.
Participants
We sampled both lay people and physicians. The lay sample consisted of
178 people (81 females, 97 males), aged 16–63 years (mean 32.01, standard
deviation 9.36). Forty-seven percent had not completed secondary education,
25% had secondary education degrees, and 28% university degrees. Thirty-four
percent knew they carried the mutant gene, 42% knew they did not, and 24%
did not know their genetic status. Thirty-one percent suffered from SCD, and
65% knew someone with it. More educated participants were less likely to
declare having the gene (pb 0.01). All were unpaid volunteers living in Cotonou,
the economic capital.
The physician sample consisted of 2 hematologists and 4 generalists
(5 females, 1 male), aged 27–35 (mean 31), from the hematology department
of Cotonou University Hospital.
Material

The questionnaire contained 111 statements about SCD based on previous

⁎ Corresponding author at: AMC Internal Medicine and Pediatrics, 724 Watervliet-Shaker
Road, Latham, NY, USA. Fax: +1 518 262 7505.
E-mail address: sorump@mail.amc.edu (P.C. Sorum).
questionnaires (Adewuyi, 2000; Kpanake et al., 2009; Muñoz Sastre et al.,
2002) and, to ensure that it would make sense to all participants, based on
discussions with focus groups of 5 and 3 random passers-by and, separately,
with the hematologists. See Tables 1 and 2 for samples; the full questionnaire
is available from the corresponding author. Each item was followed by an
11-point scale, with anchors of “Completely sure it is false” (0) and “Completely
sure it is true” (10).

0091-7435/$ – see front matter © 2012 Elsevier Inc. All rights reserved.
doi:10.1016/j.ypmed.2012.06.026
252 O. Zounon et al. / Preventive Medicine 55 (2012) 251–253

Table 1 Six very large differences between persons with and without SCD
Questions about sickle cell disease (SCD) with the greatest agreement between lay were detected. Persons with SCD disagreed much more on the statements
people and experts (in Cotonou, Benin, 2011).
that SCD is hereditary (mean 2.89 vs. 8.21) and can be transmitted
Items M (SD) E Diff. through the sexual union of two carriers (3.80 vs. 8.59) and that a blood
When a person suffers from SCD, it is necessary to go fre- 2.26 (3.76) 1.7 0.56 test can identify persons liable to suffer from it (3.82 vs. 8.46). They
quently to a health center for regular medical follow-up. were far less aware that SCD has several forms (mean 2.62 vs. 6.84), can
If a woman is unfaithful, she runs the risk of getting SCD. 0.86 (2.36) 0 0.86 produce bone problems (2.76 vs. 7.27), and can have fatal consequences
Only men can have SCD. 0.92 (2.45) 0 0.92
(4.35 vs. 8.72).
You can get SCD from food cooked in a restaurant. 0.95 (2.23) 0 0.95
Mosquito bites are a mode of transmission of SCD. 1.03 (2.48) 0 1.03
The poorer you are, the greater the risk of having SCD. 1.08 (2.57) 0 1.08
You can get SCD by inhaling or “sniffing” drugs. 1.08 (3.51) 0 1.08 Discussion
If you are skinny, it means you have SCD. 1.29 (2.79) 0 1.29
You can tell if a person has SCD simply by looking at him 1.34 (2.68) 0 1.34 Why would people more at risk for or even suffering from SCD be
or her.
SCD can be transmitted by anal sex. 1.40 (2.61) 0 1.40
less likely to have accurate knowledge of it? First, they may have
You can get SCD by having your blood drawn. 1.40 (2.95) 0 1.40 received less education about SCD, despite ongoing informational
You can catch SCD from germs present in the air you 1.40 (2.65) 0 1.40 efforts by the university hematology service and the Benin Sickle
breathe.
SCD can be transmitted by utilizing personal objects 1.51 (3.01) 0 1.51
belonging to a person suffering from it.
Table 2
The use of contraceptive pills can reduce the risk of 1.65 (2.76) 0 1.65
Questions about sickle cell disease (SCD) with the greatest disagreement between lay
getting SCD.
people and experts (in Cotonou, Benin, 2011).
M and SD = mean rating and standard deviation, on the scale of 0–10, of the lay people.
E = mean rating of the experts (the physicians working in hematology at Cotonou Items M (SD) E Diff.
University Hospital). Diff = difference between means for lay people and experts. People suffering from SCD do not usually die from it. 2.43 (3.17) 10 −7.57
Black people are the ones who are most liable to 3.20 (3.97) 10 −6.80
have SCD.
The ethics and work laboratory of the Institute of Advanced Studies, Paris, SCD may induce kidney disorders. 3.75 (3.37) 10 −6.25
France, approved the research. Blood transfusions are safe concerning SCD. 4.01 (3.68) 10 −5.99
SCD may induce cardiac problems. 4.31 (3.77) 10 −5.69
Analyses SCD may induce lung problems. 4.32 (3.84) 10 −5.68
SCD may induce cerebrovascular disease. 4.41 (3.32) 10 −5.59
The physicians' response to each question was the gold standard. The lay You can be more or less affected by SCD. 4.74 (4.02) 10 −5.26
people's mean response was compared to the experts' by means of a t-test. If SCD decreases the body's capacity to fight against 4.98 (3.80) 10 −5.02
infections.
this response was significantly different (p b .0.001), it was considered a
A screening test revealing the presence of sickle cells in 5.25 (4.30) 10 −4.75
misconception; the larger the difference, the greater the misconception. A
someone's blood means that the person has SCD.
deviation score was computed for each item and an overall mean deviation People suffering from SCD may have other diseases 5.34 (3.80) 10 −4.66
score was computed over the items for which the deviation was higher caused by it.
than a quarter of the response scale (2.5 points). This score was subjected You can be a carrier of the abnormal sickle cell without 5.39 (4.22) 10 −4.61
to analysis of variance, with gender, educational level, genetic status, and being sick.
affliction with SCD as independent factors. There are several forms of SCD. 5.53 (4.28) 10 −4.47
Painful crisis (sickle crisis) is the only known 4.47 (3.82) 0 4.47
manifestation of SCD.
Results SCD may induce bone affections. 5.88 (4.37) 10 −4.12
Nowadays, a person suffering from SCD can live up to 3.76 (3.49) 0 +3.76
The tables show samples of the lay participants' mean responses 60 years if medical care is of high quality.
(and standard deviations), the experts' mean responses, and the dif- SCD can be cured. 3.55 (3.55) 0 +3.55
SCD can be cured if treated early. 3.51 (3.47) 0 +3.51
ferences between the two.
SCD is an inherited disease. 6.57 (4.39) 10 −3.43
Table 1 shows 14 questions with the greatest agreement between A blood test can predict if you will have SCD or not. 3.37 (4.04) 0 +3.37
lay participants and experts. They were untrue statements concerning, Medical care for SCD is extremely expensive for both 6.79 (3.67) 10 −3.21
in particular, the transmission of SCD. families and state.
Table 2 shows 34 questions for which differences were significant at SCD is life threatening. 6.80 (3.94) 10 −3.20
You can get SCD by receiving contaminated blood. 3.17 (3.89) 0 +3.17
p b 0.001 and were more than one-quarter of the response scale (2.5 SCD may induce cancers. 3.16 (3.08) 0 +3.16
points). Lay people tended not to be sufficiently aware, for example, Healers or traditional practitioners know how to cure 3.07 (3.42) 0 +3.07
that SCD is hereditary, that black people have a much higher prevalence SCD.
than other groups, that a genetic test can detect the gene, that having With a blood test, you can know if you have SCD. 7.02 (4.25) 10 −2.98
If you are a carrier of SCD, and then marry with a person 7.11 (3.94) 10 −2.89
the gene does not automatically lead to illness, that sons do not auto-
who is also a carrier, you run the risk of having
matically inherit their father's illness, and that SCD cannot be cured by children with SCD.
traditional healers. Derivatives of blood products can transmit SCD. 2.88 (3.42) 0 +2.88
The mean deviation score computed for the 34 items in Table 2 The cause of SCD is unknown. 2.70 (3.53) 0 +2.70
was 4.11 (standard deviation 1.32), was not significantly different A vaccine has been developed to prevent SCD. 2.64 (3.13) 0 +2.64
You can die of SCD. 7.37 (3.94) 10 −2.63
between females (4.20) and males (4.03), and was not significantly SCD is caused by bacteria. 2.62 (3.24) 0 +2.62
affected by age. It was higher among persons who had not completed It's important that, before having children, two persons 7.48 (3.80) 10 −2.52
secondary education (mean 4.76) than among the other two groups are informed of their status concerning SCD.
(3.89 and 3.19), p b 0.001. It was also higher among persons who A child will have SCD if his father is a carrier of the 2.50 (3.44) 0 +2.50
disease.
knew they had the mutant gene (mean 4.83) than among persons
who knew they did not have the mutant gene (3.72) or those who M and SD = mean rating and standard deviation, on the scale of 0–10, of the lay people.
did not know their status (3.76), p b 0.001. Finally, it was higher E = mean rating of the experts (the physicians working in hematology at Cotonou
University Hospital). Diff = difference between means for lay people and experts.
among persons with SCD (mean 5.19) than those without it (3.62), Note: only those questions are included for which the differences were more than
p b 0.001. When the level of education was controlled for, the effect one‐quarter of the response scale (2.5 points). All these differences were significant
of having SCD was reduced but still significant, p b 0.001. at p b 0.001.
 O. Zounon et al. / Preventive Medicine 55 (2012) 251–253
Cell Association (Anani et al., 2008); or they may be less educated in
general, in part because of the impact of the disease itself on health
and income. In our sample, knowledge did improve with educational
level.
Second, social structure, cultural practices, and religious beliefs—
including a reliance on traditional healing—may impede accurate
understanding and appropriate action. In the US, SC gene carriers do
not, in general, feel stigmatized (Acharya et al., 2009; Lang and Ross,
2010), and most mothers of children found to be carriers plan to tell
their partners, their family members, and their children's future part-
ners (Lang and Ross, 2010). This might be difficult in Benin. Zaman
(2010) pointed out, in reference to Pakistan, that prevention of genetic
diseases is difficult in a society in which marriage of cousins is a princi-
pal means of reinforcing the social fabric and in which “notions of luck
and destiny trump understanding of genetics.” The result is a vicious
circle—in Pakistan and likely in Benin—in which those people most at
risk of a genetic disease are least able to prevent it or treat it appropriately.
Since our participants were city dwellers and more educated than
most residents of Benin (where the mean years of schooling of adults
over 25 is 3.3 UN, 2011), their knowledge deficits would likely be
found across the country. People who do not realize that SCD is
inherited, can be diagnosed by a blood test, and cannot, in Benin, be
cured would be less likely to make good reproductive decisions, agree
to screening, and seek treatment. The expansion of neonatal screening
and comprehensive SCD treatment (Rahimy et al., 2000, 2003, 2009)
must, therefore, be coupled with education about SCD throughout
Benin. Our questionnaire needs validation not only to ensure that our
participants did not misinterpret it but also to allow its use in evaluating
efforts in community education.
253
Conflict of interest statement
None.
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