Haemophilia (2009), 15, 193–198
ORIGINAL ARTICLE Paediatrics
Oral and general health-related quality of life among young
patients with haemophilia
E. ALPKILIÇ BASKIRT,* G. AK* and B. ZULFIKAR
*Department of Oral Medicine and Oral Surgery, Faculty of Dentistry, Istanbul University; and Cerrahpasa Medical
Faculty, Istanbul University, Istanbul, Turkey
Summary. The clinical diagnosis of dental diseases
may indicate their cause and prognosis, however it
gives little information about resulting levels of
impairment from the patients perspective. In this
study, we aimed to investigate oral and general
health-related quality of life (OHRQoL-HRQoL) in
patients with haemophilia; and to test whether
haemophiliacs would have worse or better OHRQoL
compared with the general population. Data were
collected from haemophiliacs (age range 14–35;
mean 23 ± 6.58, n = 71) and age/sex-matched con-
trols (age range 14–35; mean 21.00 ± 6.45, n = 60)
through face-to-face interviews including nine ques-
tions and using oral health impact profile (OHIP)-14,
oral health-related quality of life-UK (OHQoL-UK),
short-form general measure of health (SF)-36 to
measure self-rating oral health status, perceived
dental treatment needs, tooth brushing frequencies,
Introduction
Quality of life is actually a rather broad concept that
applies to the level of a persons general feeling of a
well-being and encompasses an extensive range of
physical and psychological characteristics and limi-
tations that describe ability to function and derive
satisfaction in doing so [1]. Therefore; quality of life
is probably best defined as the perceived discrepancy
between the reality of what a person has and the
concept of what that person wants, needs or expects
[1]. If this definition is evaluated with the view of a
dentist, a new phenomenon occurs with the name of
oral health-related quality of life (OHRQoL). With
Correspondence: Esra Alpkilic Baskirt, Department of Oral
Medicine and Oral Surgery, Faculty of Dentistry, Istanbul Uni-
versity, 34093 Capa, Istanbul, Turkey.
Tel: +90 542 321 21 42; fax: +90 212 531 22 31;
e-mail: esra_alpkilic@yahoo.com
Accepted after revision 9 September 08
 2008 The Authors
Journal compilation  2008 Blackwell Publishing Ltd
DOI: 10.1111/j.1365-2516.2008.01919.
OHRQoL-HRQoL. In the field of self-rating oral
health status, perceived dental treatment needs, tooth
brushing frequencies and OHIP, OHQoL-UK, SF-36
scores – except the subscales including vitality, role
emotional and mental health – the control group is in
better conditions compared with the haemophilia
group. At the same time, both the two groups are in
good conditions in dental attendance, vitality, role
emotional and mental health. Life quality is related
with the perceived discrepancy between the reality of
what a person has and the concept of what that
person wants, needs or expects. In order to eliminate
the dilemma in the field of health, we should
facilitate the haemophiliacs lives by serving the
health care in a multidisciplinary view.
Keywords: health, haemophilia, OHIP, OHQoL-UK,
oral, quality of life
this viewpoint OHRQoL is a multidimensional
construct that reflects (among other things) peoples
comfort when eating, sleeping and engaging in social
interactions; their self-esteem; and their satisfaction
with respect to oral health [2].
Up to now, many researches have been reported
about the general health-related quality of life among
the haemophilia patients. But no researches which
concerned with the oral health-related quality of
haemophiliacs lives was found in the literature. In
this study, we aimed to investigate oral and general
health-related quality of life in patients with haemo-
philia; and to test whether haemophiliacs would have
worse or better OHRQoL compared with the general
population.
Materials and methods
In this cross-sectional study, 71 male patients with
haemophilia (age range 14–35; mean 23 ± 6.58) and
193
194 E. ALPKILIÇ BASKIRT et al.
60 healthy controls (age range 14–35; mean
21.00 ± 6.45) were investigated. The study group
comprises 66 patients with haemophilia A and five
patients with haemophilia B. Thirty-four of haemo-
philia A patients had severe forms, 14 had moderate
and 18 had mild type of disease. Two patients had
severe form of haemophilia B, whereas one had
moderate and two had mild form. All of the
haemophiliacs who were registered at Haemophilia
Society of Turkey were phoned to seek voluntary
consent to enrol in the study. They did not have any
dental complaints, psychiatric disorders, systemic
diseases that effect the oral health (such as diabetes,
etc.) and also, they did not use any drugs (such as
cyclosporine, phenitoin) inducing periodontal prob-
lems. Healthy controls with no dental complaint
were selected from general population. The criteria
for exclusion from the control group were psychiat-
ric disorders, congenital or acquired bleeding disor-
ders, any systemic diseases effecting the oral health
(such as diabetes, etc.), and usage of drugs (such as
cyclosporine, phenitoin) inducing periodontal prob-
lems. The study was approved by the Local Ethics
Committee of Istanbul University and informed
voluntary consent was taken from the participants.
All of the participants were invited to Istanbul
University, Faculty of Dentistry, Department of Oral
Medicine and Oral Surgery Clinic at a mutually
convenient time for a verbal interview, and then they
were asked to fill out three questionnaires. The
verbal interview part includes nine questions for
getting information about demographic data, haemo-
philia types (in the study group), systemic diseases,
self-rating oral health status, perceived dental treat-
ment needs, pattern of dental attendance and tooth
brushing frequencies. The questionnaire part in-
cludes two specific surveys for oral health, named
as Oral Health Impact Profile (OHIP) and Oral
Health related Quality of Life-United Kingdom
(OHQoL-UK); and Short-Form General Measure
of Health (SF-36) which is a general measure of
health status. Both of the OHIP and OHQoL-UK
were translated and adapted into Turkish by Mumcu
et al. [3]. At the beginning, OHIP questionnaire
consists of 49 items. The short version of the
instrument (OHIP-14) was developed and validated
by Slade and used previously with good reliability
and validity. Better OHRQoL was indicated with
lower scores in OHIP questionnaires [4]. The
OHQoL-UK questionnaire has recently been devel-
oped in UK. It consists of 16 questions which
incorporate both negative and positive influences
on oral health. In OHQoL-UK questionnaire, high
scores indicated a better OHRQoL [5]. The SF-36,
Haemophilia (2009), 15, 193–198
a widely used measure of generic health-related
quality of life, comprises 36 items for evaluating
eight subscales including physical functioning, role
limitations because of the physical functioning,
bodily pain, general health, vitality, social function-
ing, role limitations because of emotional problems,
and mental health. Each SF-36 subscale was con-
verted to a scale from 0 to 100. The higher scores
indicated a better health-related quality of life. It was
translated and validated into Turkish by Koçyiğit
et al. [6]. Mann–Whitney U-test and chi-squared test
was applied for the statistical assessment of ques-
tionnaires and the answers scores.
Results
In order to get knowledge about the self-rating oral
health status, the study and control groups were
asked to answer the question How do you rate your
own oral health status? Visual analogue scale (VAS)
was used for the assessment of answers with a scale
from 0 to 10. It was found out that VAS scores were
significantly worse in study group compared with
control group (Table 1). Thus, haemophiliacs
reported their oral health is as much worse compared
with the healthy controls (Fig. 1).
Perceived dental treatment needs were informed by
asking a yes/no type of question In your opinion, do
you need any type of dental treatments? with two
optional choices (Fig. 2). Statistically, haemophilia
group reported that they need the dental treatment
with significantly higher ratings than that of healthy
controls (Table 2).
Table 1. Statistical assessment of self-rating oral health status
scores.
Study Control Mann–Whitney
group group U-test
Visual 5.40 ± 2.20 6.65 ± 1.73 P = 0.002
Analogue Scale
VAS
7
6 VAS
5
Scores
4
3
2
1
0
Study group Control group
Groups
Fig. 1. Assessment of self-rating oral health status scores on a
diagram.
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Journal compilation  2008 Blackwell Publishing Ltd
 ORAL AND GENERAL HEALTH-RELATED QOL AMONG HAEMOPHILIACS 195

Perceived dental treatment need Pattern of dental attendance

Yes
80 100 No
Yes 90
70 80

Percentage
60 No 70
Percents

50 60
40 50
40
30 30
20 20
10 10
0 0
Study group Control group Study group Control group
Groups Groups

Fig. 2. Assessment of perceived dental treatment needs scores on a Fig. 3. Assessment of visit to dental office on a diagram.
diagram.

Pattern of dental attendance

Table 2. Statistical assessment of perceived dental treatment needs 40
scores. 35 Study group
30 Control group

Percentage
Study group (%) Control group (%) Chi-squared test 25
20
Yes 48.3 71.8 P = 0.006 15
No 51.7 28.2 10
5
0
Never 0–6 7–12 Over 13
Table 3. Statistical assessment of visit to dental office. Months

Study group (%) Control group (%) Chi-squared test Fig. 4. Assessing the frequency of visit periods to dental office on a
Yes 88.7 90.0 P = 0.085 diagram.
No 11.3 10

Table 4. Statistical assessment of visit periods of dental office.

The pattern of dental attendance of both the
study and control group were evaluated by asking
the questions Have you ever been a dental office?
and When was the last time you visited a dental
office? Statistically, no significant difference was
found between the haemophiliacs and healthy
controls about visits to the dental office (Table 3).
The results are shown in Fig. 3. But, during the
assessment of visit period percentages, it was
realized that in the study group percentage of
people, who never visited a dental office and who
have not made any dental control over one year, is
higher than the control group. On the other hand,
the percentage of healthy controls who visit the
dentist within last 0–6 and 7–12 months is higher
than the haemophiliac group (Fig. 4). This means
that the control group attended the dental visits
more regularly when compared to the haemophilia
group (Table 4).
The question How often do you brush your
teeth? was asked to the participants, to get
information about their tooth brushing frequency.
The answers include the options of never brushing,
whenever I remember, once/twice a month, once/
twice a week, once a day and twice/more than
twice a day. The answers that include the last two
Study group (%) Control group (%)
Never 11.3 8.3
0–6 29.6 36.7
7–12 23.9 28.3
Over 13 35.2 26.6
options (once/twice/more than twice a day) were
accepted as the indicator of regular tooth brushing
frequency. By the way the prevalence of tooth
brushing was found to be significantly higher in the
control group (Table 5). So, healthy controls have
a more regular brushing habit than the haemophil-
iacs (Fig. 5).
On the questionnaire part, the results are similar to
the verbal part. Statistically, the mean scores of
OHQoL-UK and OHIP revealed that the OHRQoL
status were clearly at a worse level with the haemo-
philiac patients compared with healthy controls
(Table 6). In addition, SF-36 subscale scores – except
vitality, role emotional and mental health – were
significantly better in control group (Table 7). No
statistical obvious difference was observed between
the study and control group in vitality, role emo-
tional and mental health (Table 8). The results are
disclosed as a diagram (Fig. 6–8). Finally, no signifi-
cant correlation was observed between oral and

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Journal compilation  2008 Blackwell Publishing Ltd Haemophilia (2009), 15, 193–198
196 E. ALPKILIÇ BASKIRT et al.

Table 5. Statistical assessment of tooth brushing frequency scores. Table 8. Statistical assessment of SF-36 scores including the
vitality, role emotional and mental health.
Study group (%) Control group (%)
Never 4.2 3.3 Mann–Whitney
Irregular 35.3 21.7 Study group Control group U-test, P
Regular 60.5 75 Vitality 65.91 ± 19.89 67.58 ± 17.06 0.618
Role emotional 64.78 ± 37.75 73.88 ± 33.10 0.171
Mental health 65.57 ± 15.01 63.86 ± 16.36 0.844

Dental hygiene(brushing)
80
70 Study group OHIP and OHQoL-UK scores in the study
60 and control group
Percentage

Control group
50 60
40 Study group
50
30 Control group
20 40

Scores
10
0 30
Never Irregular Regular 20
Brushing
10
Fig. 5. Assessment of tooth brushing frequency scores on a 0
diagram. OHIP OHQoL–UK

Fig. 6. Assessment of oral health impact profile (OHIP) and oral

health-related quality of life (OHQoL) scores on a diagram.
Table 6. Statistical assessment of OHIP and OHQoL scores.
OHIP OHQoL-UK Chi-squared test
Study group 12.7 47.05 P = 0.001
SF-36 scores in the study and control groups
Control group 8.35 53.31
120 Study group
OHIP, oral health impact profile; OHQoL, oral health-related
quality of life. Control group
100

80
Scores

Table 7. Statistical assessment of SF-36 scores except vitality, role 60

emotional and mental health.
40
Mann–
Whitney 20
Study group Control group U-test, P
0
Physical functioning 70 ± 21.41 95.25 ± 9.17 <0.001 Physical Role- Bodily pain General Social
Role-physical 56.33 ± 37.96 77.5 ± 31.78 <0.001 functioning physical health functioning
Bodily pain 64.01 ± 26.26 82.43 ± 22.85 <0.001
General health 49.56 ± 22.94 67.61 ± 17.09 <0.001 Fig. 7. Assessment of SF-36 scores except vitality, role emotional
Social functioning 75.51 ± 20.20 83.12 ± 19.90 0.012 and mental health on a diagram.

general health-related quality of life scores in the SF-36 SCORES

study and control groups. 76
74 Study group
As a final result for the study, we can conclude Control group
72
that except dental attendance and SF-36 subscales 70
Scores

– including vitality, role limitation because of 68

emotional problems and mental health – the 66
64
control group is in better conditions compared 62
with the haemophilia group. At the same time, 60
both the groups are in good conditions in dental 58
Vitality Role-emotional Mental health
attendance and subscales of vitality, role limitation
because of emotional problems and mental health Fig. 8. Assessment of SF-36 scores including the vitality, role
(Table 9). emotional and mental health on a diagram.

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 ORAL AND GENERAL HEALTH-RELATED QOL AMONG HAEMOPHILIACS 197

Table 9. The comparison of all items and questionnaire scores on because of the various factors; so, on this subject,
one diagram. there is not a consensus among the investigators
Study group Control group interested in the haemophilia. For example, the
VAS Worse Better researches from UK and Northern Ireland revealed
Treatment need Worse Better that the children with haemophilia have a signifi-
Dental attendance Good Good cantly lower prevalence of dental carries compared
Last visit time Worse Better with matched healthy controls [10,11]. On the
Tooth brushing Worse Better contrary, two researches from Poland and Turkey
OHIP scores Worse Better
disclosed that worse dental status and oral hygiene
OHQoL-UK scores Worse Better
Physical functioning Worse Better
level were seen in children with haemophilia [12,13].
Role limitations-physical Worse Better In 2006, dental and periodontal health of children
Bodily pain Worse Better with haemophilia A were investigated by Albayrak
General health Worse Better et al. It was realized that in the patient group,
Vitality Good Good gingival index, DMF(T) and DMF(S) index scores
Social functioning Worse Better were found statically higher than the control group.
Role limitations-emotional Good Good
Furthermore, Fiske et al. [14] from England revealed
Mental health Good Good
that dental treatment needs of adults with inherited
VAS, visual analogue scale; OHIP, oral health impact profile; bleeding disorders were in high ratings. In our study,
OHQoL, oral health-related quality of life.
we have made an advanced and different research
including the evaluation of self-rating oral health
Discussion
status, perceived dental treatment needs, pattern of
Oral health affects the people physically and psy- dental attendance, dental care habits and OHRQoLs
chologically and also influences how they grow, among the haemophilia patients. The results showed
enjoy life, look, speak, chew, taste food and social- that haemophiliacs have worse life quality than the
ize, as well as their feelings of social well-being. In healthy controls. Moreover, the main subject of this
developing and industrialized countries, last decade study is not to determine the oral health level (e.g.
studies have indicated that dental caries occur one of number of decayed, missed, filled teeth, periodontal
the major health problem in the adult population [7]. conditions or the number of teeth) among the
Moreover, recent researches has highlighted that oral haemophiliacs; the main purpose is to asses the level
disorders have emotional and psycho-social conse- of oral health-related quality of haemophiliacs lives.
quences as serious as other disorders. Reisine [8] and Because, in some conditions oral health level is not
Gift et al. [9] have indicated that approximately 160 able to reflect the level of perceived OHRQoL. For
million work hours are lost in a year because of oral example, because of the dental pain which is effected
disorders. by thermal changes, the patient with a few number of
In the view of haemophilia, providing haemo- decayed teeth, may perceive the OHRQoL in a poor
philiacs orientation about dental care is a little bit status. On the contrary, a patient with no teeth may
complicated than the healthy population. Fear of be glad to use the total prosthesis and may perceive
bleeding during procedures, poor level of education the OHRQoL in the maximum status. With this
and income, and difficulties in getting factor con- study, we evaluated the perceptions of the patients in
centrates cause the negligence of dental care by the the field of OHRQoL without the assessment of oral
haemophiliacs and the affluent population are not an health level, also the treatment needs.
exception. So, dental provision for patients with
haemophilia is relatively poor in developing coun-
Conclusion
tries. In the light of these data, we estimated that the
poor oral hygiene level causes the poor level of oral At the beginning of this article, it was mentioned that
health quality within the haemophiliacs. Our study is life quality is related with the perceived discrepancy
the first research that is concerned with the haemo- between the reality of what a person has and the
philiacs OHRQoLs. concept of what that person wants, needs or expects.
In order to get information about the oral health In order to eliminate the dilemma in the field of
level of haemophiliacs, different criteria including health, we should facilitate the haemophiliacs lives
decayed-missed-filling (DMF) index scores, plaque by serving the health care in a multidisciplinary view.
and gingival indices, etc., have been evaluated by However, the oral diseases usually are not life
different investigators in different parts of the world. threatening, it should be remembered that oral health
But various sayings and comments were declared is one of the most important part of the general body

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198 E. ALPKILIÇ BASKIRT et al.
health. Haemophiliacs should be advised about the
importance of oral care; patients should be recalled
for regular dental visits; and by the help of these
measures OHRQoL levels of the haemophiliacs
should be increased.
Disclosures
The authors stated that they had no interests which
might be perceived as posing a conflict or bias.
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