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Original Research (Original Article) 


Abdualelah Awad Alrashidi et al, 2019;3(8):705–709.

International Journal of Medicine in Developing Countries

Public awareness of hemophilia among children in Saudi Arabia

Abdualelah Awad Alrashidi1*, Abdulrahman Bader Almazyad1, Haifa Lafi Alenzi2, Sara Emad Alrayya2, Lura Ahmad Habib3, Afnan Moed Alsulaymi4, Shahad Bandar Alyoubi5, Ahmad Roshdy Ahmad6

Correspondence to: Abdualelah Awad Alrashidi

*Medical Student, Jouf University, Sakakah, Saudi Arabia.

Email: Adalrashidi450 [at] gmail.com

Full list of author information is available at the end of the article.

Received: 23 April 2019 | Accepted: 29 April 2019


ABSTRACT

Background:

Hemophilia in children is one of the most common serious congenital coagulation factor deficiency diseases. The aim of this study was to assess the awareness among the population of Saudi Arabia about various aspects of hemophilia in children.


Methodology:

A cross-sectional electronic questionnaire-based study was conducted on 810 adult Saudi males and females of various ages from different districts (Southern, Eastern, Northern, Eastern, and Western), who represented all the different localities and cultures of the kingdom.


Results:

The present study showed that 46.7% of participants did not know about hemophilia. A decreased level of public awareness about hemophilia was reported in all the groups with no statistical significant difference between secondary education group in comparison with university education group.


Conclusion:

The results of the present study raised the need for increasing public awareness about hemophilia in children. A multidisciplinary approach is mandatory, including educational programs and campaigns aiming at raising overall public awareness.


Keywords:

Children, hemophilia, public awareness, Saudi Arabia.


Introduction

Hemophilia in children is one of the most common serious congenital coagulation factor deficiency diseases [1]. It is caused by genetic abnormalities in coagulation factor deficiencies; factor VIII (type A), factor IX (type B), or factor XI (type C) [2]. Severity of hemophilia is classified according to the blood concentration of coagulation factor (mild: 5%–40% of normal factor level; moderate: 1%–5% of normal; severe: <1% of normal), which will determine expected bleeding rate [3]. It can also be acquired, but this is rare, caused by auto antibodies against coagulation factors, malignancies, diabetes, liver diseases, infection, and autoimmune disorders [4]. Quality of life of patients with hemophilia has dramatically improved over the last years, mainly for new therapeutic options and the awareness of people to its risk factor and its complications [5]. Hemorrhage is a dangerous health concern in hemophilic patients, the sites of hemorrhage vary with age. While delivery-associated intracranial hemorrhage, circumcision, and venipuncture bleeding are the most common in newborn period, joint disease, especially in ankles, knee, elbow, and head trauma, occur in the older children and adolescents [1]. Internal bleeding may damage the tissues and organs of the body and it could be a life-threatening condition [6]. The issues and challenges in infants/young children are different from those in older children and adults although episodes of bleeding still predominate as the diagnostic symptom [7]. The awareness of clinical manifestations of hemophilia is a very important step to improve it and treat its complications [8]. Also, limited researches have been conducted on how the parents of children with hemophilia get awareness of this disease and experience their life situation [9]. The most disappointing part of this disease is that even medical personnel are sometimes not familiar with its diagnosis and management [7]. However, hemophilia, if not early diagnosed and properly managed, can lead to chronic diseases and lifelong disabilities [1].

The aim of this study was to assess the awareness among the population in Saudi Arabia about various aspects of hemophilia in children for a better understanding of the disease and to improve the quality of life of these children.


Subjects and Methods

This was a cross-sectional electronic questionnaire-based study that was conducted on 810 adult Saudi males and females of various ages from different districts (Southern, Eastern, Northern, Eastern, and Western), who represented all different localities and cultures of the kingdom. A quantitative method was used in this study. Inclusion criteria included all the adults of Saudi either male or female who had any degree of education. Exclusion criteria included non-educated people, children, medical, and paramedical personnel, patients with chronic diseases as malignancy hepatic or renal, any hematological medical problems or mentally affected people. An electronic format of the survey questionnaire was used and was divided into two sections; the first section was concerned with demographic information of the participants, while the second section evaluated the personal knowledge about hemophilia in children. The sample size was calculated using the sample size calculator at surveysystem.com (Creative Research System) [10]. Every effort was done to ensure a valid randomization technique to eliminate selection biasness through harmony in selecting participants in the study regarding their age, sex, educational level, and residency.

Data analysis was carried out using Microsoft Excel 2016 (Microsoft Corporation, Seattle, WA), and the Statistical Package for Social Sciences version 23 (SPSS Inc., Chicago, IL).


Results

Out of 810 participants, 54.1% were females, the highest percentage lied in the age group 21–29 years (41.1%) and 74.2% received university education or above. Not much difference was found between the number of participants from the five districts of Saudi Arabia (Table 1).

Regarding general knowledge about hemophilia in children, 46.7% of the participants did not know the disease called hemophilia and consequently this group was excluded from completing the study. The data obtained from the rest of the participants (N. 432) informed that 54% of them ignore gender prevalence of hemophilia, nearly half of them did not know if it was hereditary or acquired disease and 88.9% of them did not know any hemophilia patient (Table 2).

Fifty-four percent of the studied group did not have enough information about hemophilia. Many participants did not know if the disease was treatable or not, bleeding might follow from trauma, or may ensure death, and the disease might be acquired after liver disease or tumor (56.3%, 39.5%, 46%, and 58.5%, respectively) (Table 3).

About the educational groups, more than half of both studied groups did not know if hemophilia was treatable or not, hereditary or acquired, gender prevalence, nor the disease might be acquired after liver disease or tumor. About half of both groups informed that they did not have enough knowledge about hemophilia. About 50% of the university group knew that the bleeding might follow trauma or injury as compared to about 40% of the secondary group. Also, half of the secondary group did not know that bleeding might lead to death in comparison to 43% of the university group (Table 4).

Table 1. Demographic data of the study participants (N = 810).

Sex Frequency Percent
Females 379 54.1
Males 321 45.9
Age group
18–20 165 20.4
21–29 333 41.1
30–39 117 14.4
40–49 142 17.5
50–59 53 6.5
Educational level
Basic 36 1.4
Preparatory 24 3.0
Secondary 119 21.4
University or more 483 74.2
Area of residence
Southern 135 19.29
Eastern 130 18.57
Northern 155 22.14
Western 150 21.43
Central 130 18.57

Table 2. Personal general knowledge about hemophilia in children.

Do you Know a disease called Hemophilia (N = 810) Number Percent
Yes 432 53.3
No 378 46.7
Is it more common In males or females (N = 432)
Females 89 20.6
Males 110 25.4
Don’t know 233 54.0
Is it hereditary or acquired disease(N = 432)
Don’t know 214 49.5
Acquired 52 12.0
Hereditary 166 38.5
Do you know a case of hemophilia(N = 432)
No 384 88.9
Yes 48 11.1

Table 3. Personal specific knowledge about hemophilia in children (N = 432).

Questions No
No. & %
Yes
No. & %
Don’t know
No. & %
Do you have enough information about hemophilia 232 (53.7) 98 (22.7) 102 (23.6)
Is it treatable disease or not 46 (10.7) 143 (33.0) 243 (56.3)
Do you know that the case may bleed from any trauma or injury 62 (14.4) 199 (46.0) 171 (39.5)
Do you know that the case may bleed till death 70 (16.3) 163 (37.7) 199 (46.0)
Do you Know that the disease may be acquired after liver disease or tumor 107 (24.7) 72 (16.8) 253 (58.5)

Table 4. Relation between educational level (secondary and university groups) and knowledge about hemophilia in children (N = 425).

Question Secondary (n = 96) University (n = 329) p value
Is it treatable or not? No 9 (9.8%) 38 (11.5%) 0.41
Don’t know 59 (61.8%) 177 (53.9%)
Yes 28 (28.3%) 114 (34.6%)
Is it hereditary or acquired disease? Don’t know 49 (50.9%) 158 (48.1%) 0.75
Acquired 12 (12.7%) 37 (11.3%)
Hereditary 35 (36.4%) 134 (40.6%)
Is it more common in females or males? Female 21 (21.4%) 69 (21.1%) 0.86
Males 23 (24.3%) 88 (26.6%)
Don’t know 52 (54.3%) 172 (52.2%)
Do you have enough information about Hemophilia? No 53 (55.5%) 177 (53.7%) 0.13
Don’t know 27 (28.3%) 69 (21.0%)
Yes 16 (16.2%) 83 (25.3%)
Do you know that the disease may be acquired after liver disease or tumor? No 22 (22.5%) 85 (26.0%) 0.41
Don’t know 61 (63.6%) 185 (56.2%)
Yes 13 (13.9%) 59 (17.8%)
Do you know that the case may bleed from any trauma or injury? No 18 (18.5%) 43 (13.1%) 0.18
Don’t know 40 (41.6%) 124 (37.6%)
Yes 38 (39.9%) 162 (49.3%)
Do you know that the case may bleed till death? No 17 (17.9%) 54 (16.5%) 0.28
Don’t know 49 (50.9%) 143 (43.4%)
Yes 30 (31.2%) 132 (40.1%)

Discussion

Hemophilia in children is one of the most common serious congenital coagulation factor deficiency diseases [1]. The present study showed that 95% of the participants who filled the questionnaire had received secondary or university education. This reflects their free access to internet and readiness to respond to an electronic questionnaire because of their background of high education. Nearly half (46.7%) of the participants were not aware of hemophilia and consequently were excluded from the study. Fifty percent of the population studied did not know gender prevalence of the disease and whether is if it is hereditary or acquired. This was somewhat consistent with the research done by Naveed et al. [11] who reported that 40% of their studied population did not know about hemophilia and 50% did not know that hemophilia is hereditary mainly. Indicators of decreased public awareness were reflected from data in Table 3, where half of the participants did not have enough information and more or less around half of them did not know if hemophilia was treatable and bleeding might be fatal. The only positive response noted was that 46% of participants knew the hemorrhagic nature of the disease.

Decreased public awareness about hemophilia may be explained by the decreased number of hemophilic patients around the world; 405,000 patients are registered worldwide, while in Saudi Arabia only 2,200 hemophilic patients are registered [12]. It is also known that about 70% of hemophilic patients are under diagnosed and untreated worldwide as reported by The World Federation of Hemophilia [13]. The main target of health care system is to set primary health care as priority, like nutrition, vaccinations programs, family planning and management of common or endemic infectious diseases, such as tuberculosis or malaria, but a disorder like hemophilia is considered as a rare disease [14]. Although a decreased level of public awareness about hemophilia was reported in secondary education group in comparison with university education group, there was no statistically significant difference between both groups. This may be attributed to the high general information acquired in secondary education group that is close enough to that of university education one.

This study was conducted through electronic questionnaire which limited the number of participants, as only people with internet access could participate. This marks the limitation of the study.


Conclusion

The results of the present study raised the need for enhancement of public awareness about hemophilia in children. A multidisciplinary approach is mandatory, including the broadcast of health educational programs through media or educational campaigns held at areas of public gathering, such as schools, universities, health care centers, including lectures or distributing educational leaflets aiming at raising overall public awareness.


Conflict of interest

None.


Funding

None.


Consent for publication

Not required.


Ethical approval

This study was approved by the Ethical Committee of Jouf University (LCBE) and approved via letter number: 3-8-6/40, dated 13 Feb 2019.


Author details

Abdualelah Awad Alrashidi1, Abdulrahman Bader Almazyad1, Haifa Lafi Alenzi2, Sara Emad Alrayya2, Lura Ahmad Habib3, Afnan Moed Alsulaymi4, Shahad Bandar Alyoubi5, Ahmad Roshdy Ahmad6

  1. Medical Student, Jouf University, Sakakah, Saudi Arabia
  2. Medical Student, Northern Border University, Arar, Saudi Arabia
  3. Medical Student, Taif University, Taif, Saudi Arabia
  4. Medical Student, Umm Al-Qura University, Mecca, Saudi Arabia
  5. Medical Student, King Abdulaziz University, Jeddah, Saudi Arabia
  6. Professor of Pediatrics, College of Medicine, Jouf University, Sakakah, Saudi Arabia

References

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How to Cite this Article
Pubmed Style

Alrashidi AA, Ahmad AR, Almazyad AB, Alenzi HL, Habib LA, Alyoubi SB, Alsulaymi AM, Alrayya SE. Public Awareness of Hemophilia among Children in Saudi Arabia.. IJMDC. 2019; 3(8): 705-709. doi:10.24911/IJMDC.51-1552775452


Web Style

Alrashidi AA, Ahmad AR, Almazyad AB, Alenzi HL, Habib LA, Alyoubi SB, Alsulaymi AM, Alrayya SE. Public Awareness of Hemophilia among Children in Saudi Arabia.. http://www.ijmdc.com/?mno=37570 [Access: September 23, 2019]. doi:10.24911/IJMDC.51-1552775452


AMA (American Medical Association) Style

Alrashidi AA, Ahmad AR, Almazyad AB, Alenzi HL, Habib LA, Alyoubi SB, Alsulaymi AM, Alrayya SE. Public Awareness of Hemophilia among Children in Saudi Arabia.. IJMDC. 2019; 3(8): 705-709. doi:10.24911/IJMDC.51-1552775452



Vancouver/ICMJE Style

Alrashidi AA, Ahmad AR, Almazyad AB, Alenzi HL, Habib LA, Alyoubi SB, Alsulaymi AM, Alrayya SE. Public Awareness of Hemophilia among Children in Saudi Arabia.. IJMDC. (2019), [cited September 23, 2019]; 3(8): 705-709. doi:10.24911/IJMDC.51-1552775452



Harvard Style

Alrashidi, A. A., Ahmad, . A. R., Almazyad, . A. B., Alenzi, . H. L., Habib, . L. A., Alyoubi, . S. B., Alsulaymi, . A. M. & Alrayya, . S. E. (2019) Public Awareness of Hemophilia among Children in Saudi Arabia.. IJMDC, 3 (8), 705-709. doi:10.24911/IJMDC.51-1552775452



Turabian Style

Alrashidi, Abdualelah Awad, Ahmad Roshdy Ahmad, Abdulrahman Bader Almazyad, Haifa Lafi Alenzi, Laura Ahmad Habib, Shahad Bandar Alyoubi, Afnan Moed Alsulaymi, and Sara Emad Alrayya. 2019. Public Awareness of Hemophilia among Children in Saudi Arabia.. International Journal of Medicine in Developing Countries, 3 (8), 705-709. doi:10.24911/IJMDC.51-1552775452



Chicago Style

Alrashidi, Abdualelah Awad, Ahmad Roshdy Ahmad, Abdulrahman Bader Almazyad, Haifa Lafi Alenzi, Laura Ahmad Habib, Shahad Bandar Alyoubi, Afnan Moed Alsulaymi, and Sara Emad Alrayya. "Public Awareness of Hemophilia among Children in Saudi Arabia.." International Journal of Medicine in Developing Countries 3 (2019), 705-709. doi:10.24911/IJMDC.51-1552775452



MLA (The Modern Language Association) Style

Alrashidi, Abdualelah Awad, Ahmad Roshdy Ahmad, Abdulrahman Bader Almazyad, Haifa Lafi Alenzi, Laura Ahmad Habib, Shahad Bandar Alyoubi, Afnan Moed Alsulaymi, and Sara Emad Alrayya. "Public Awareness of Hemophilia among Children in Saudi Arabia.." International Journal of Medicine in Developing Countries 3.8 (2019), 705-709. Print. doi:10.24911/IJMDC.51-1552775452



APA (American Psychological Association) Style

Alrashidi, A. A., Ahmad, . A. R., Almazyad, . A. B., Alenzi, . H. L., Habib, . L. A., Alyoubi, . S. B., Alsulaymi, . A. M. & Alrayya, . S. E. (2019) Public Awareness of Hemophilia among Children in Saudi Arabia.. International Journal of Medicine in Developing Countries, 3 (8), 705-709. doi:10.24911/IJMDC.51-1552775452