Awareness among Parents of Beta Thalassemia Major and Intermedia Patients in Three Centers in Baghdad and Al-Nasiriyah, Iraq in 2017
Keywords:Thalassemia, Awareness, Prevention, Transmission, Blood Transfusion
Background: Thalassemia is an autosomal recessive disease common in Iraq with a prevalence of 35.7 per 100000. Beta thalassemia major is a life-threatening condition with many complications which if not managed could cause death at an early age. This cross-sectional study aimed to assess the awareness of parents/caregivers of children with beta-thalassemia major and intermedia, as enhancing awareness is the first and the most important step in all prevention programs
Methods: We conducted this study in three thalassemia centers (two in Baghdad and one in Al-Nasiriyah) from July 20th, 2017 to September 20th, 2017. This study involved 193 parents of thalassemic children under the age of 15 who come to the centers frequently for blood transfusion. The study assessed the awareness questionnaire through interviews. Data analysis was performed using the Statistical Package for the Social Sciences program (SPSS) version 24.
Results: We found that awareness was low in many aspects. The highest knowledge was for foods that thalassemic patients shouldn't eat and for the early manifestation signs in thalassemic patients which is 94.8% and 86%, respectively. The lowest knowledge was for the consideration of human immune deficiency virus as a transfusion-transmitted disease and for the chance of having an affected child when both parents are carriers which were 37.3% and 11.9%, respectively.
Conclusion: Parents have low awareness of thalassemia in many aspects. Thalassemia care centers may need to provide more education for the parents of patients with thalassemia.
Mohan H. Textbook of Pathology. 7 ed. New Delhi: Jaypee Brothers Medical Publishers; 2015.
Colledge N, Davidson S, Ralston S, Walker B. Davidson's principles and practice of medicine. 21 ed. Edinburgh, New York: Churchill Livingstone/Elsevier, 2010. P.1029-1030.
Modell B, Darlison M. Global epidemiology of haemoglobin disorders and derived service indicators. Bull World Health Organ. 2008;86(6):480–487.
Kadhim KA, Baldawi KH. Lami FH. Prevalence, Incidence, Trend, and Complications of Thalassemia in Iraq. Hemoglobin. 2017 May;41(3):164-168.
Muncie HL Jr, Campbell J. α And β thalassemia. Am Fam Physician. 2009;80(4):339–344.
Saxena R, Banerjee T, Aniyery RB. Thalassemia and its Management during Pregnancy. World J Anemia. 2017;1(1):5-17.
Vichinsky EP. Changing patterns of thalassemia worldwide. Ann NY Acad Sci. 2005;1054:18–24.
AL Jadir SM, Jalal MZ, AL Ghreer MF, AL Hamdani MS, AL Omaree WR. Osteoporosis in Iraqi patients with thalassemia. Arthritis Res Ther. 2012;14(Suppl 1):P4.
Karakas S, Tellioglu AM, Bilgin M, Omurlu IK, Caliskan S, Coskun S. Craniofacial Characteristics of Thalassemia Major Patients. Eurasian J Med. 2016 Oct;48(3):204–208.
Amini F, Jafari A, Eslamian L, Sharifzadeh S: A cephalometric study on craniofacial morphology of Iranian children with beta-thalassemia major. Orthod Craniofacial Res, 2007;10:36–44
Abdulzahra MS, Al-Hakeim HK, Ridha MM. Study of the effect of iron overload on the function of endocrine glands in male thalassemia patients. Asian J Transfus Sci. 2011 Jul-Dec;5(2):127–131.
Kremastinos DT, Farmakis D, Aessopos A, Hahalis G, Hamodraka E, Tsiapras D, et al. β-Thalassemia Cardiomyopathy. Circulation: Heart Failure. 2010;3:451-458.
Arif F, Fayyaz J, Hamid A. Awareness among parents of children with thalassemia major. J Pak Med Assoc. 2008;58:621-3.
Anie KA, Massaglia P. Psychological therapies for thalassaemia. Cochrane Database Syst Rev. 2014 Mar 6;(3):CD002890.
Jenn NC. Designing A Questionnaire. Malays Fam Physician. 2006;1(1):32–35.
Boynton P. M, Greenhalgh, T. Selecting, designing, and developing your questionnaire. BMJ. 2004; 328:1312.
Leung WC. How to conduct a survey. Student BMJ. 2001 May;9:143-5.
Ishfaq K, Ahmad T, Naeem SB, Ali J, Zainab F. The knowledge of parents having thalassemia child. Isra Medical Journal, 2016;8(2):79-81.
Bilal M, Saleem M, Mustafa G, Naveed S. Level of Awareness about Thalassemia among Parents of Thalassaemic Children. Journal of Rawalpindi Medical College (JRMC); 2016;20(3):209-211.
Lucarelli G, Galimberti M, Polchi P, Angelucci E, Baronciani D, Giardini C. et al. Marrow transplantation in patients with thalassemia responsive to iron chelation therapy. N Engl J Med. 1993;329:840-44.
Hammadi AM, Azeez WA, Jasim FH, Alshammary N, Sewan AD, Alrawaq K, et al. First Report on Stem Cell Transplant from Iraq. Exp Clin Transplant. 2017 Feb;15(Suppl 1):133-135.
Machado T, Bomfim T, Souza L, Soares N, Santos F, Acosta A, et al. Types of marriages, population structure and genetic disease. Journal of Biosocial Science. 2013;45(4):461-470.
Rudra S, Chakrabarty P, Hossain MA, Ripon MJ, Rudra M, Mirza T. Awareness among Parents of β-Thalassemia Major Patients Regarding Prenatal Diagnosis and Premarital Screening in Day Care Centre of Transfusion Medicine Department. Mymensingh Med J. 2016 Jan;25(1):12-7.
Ahmadnezhad E, Sepehrvand N, Jahani F. Evaluation and Cost Analysis of National Health Policy of Thalassaemia Screening in West-Azerbaijan Province of Iran. Int J Prev Med. 2012 Oct;3(10):687–692.
Kalokairinou EM. The experience of β-thalassaemia and its prevention in Cyprus. Med Law 2017;26: 291–307.
Inati A, Zeineh N, Isma’eel H, Koussa S, Gharzuddine W, Taher A. β-thalassemia: The Lebanese experience. Clin Lab Haematol 2006;28:217–227.
Samavat A, Modell B. Iranian national thalassaemia screening programme. BMJ. 2004;329:1134–1137.
Antonio C, Kan YW. The Prevention of Thalassemia. Cold Spring Harb Perspect Med. 2013 Feb 1;3(2):a011775.
How to Cite
Authors who publish with this journal agree to the following terms:
- The Author retains copyright in the Work, where the term “Work” shall include all digital objects that may result in subsequent electronic publication or distribution.
- Upon acceptance of the Work, the author shall grant to the Publisher the right of first publication of the Work.
- The Author shall grant to the Publisher and its agents the nonexclusive perpetual right and license to publish, archive, and make accessible the Work in whole or in part in all forms of media now or hereafter known under a Creative Commons Attribution 4.0 International License or its equivalent, which, for the avoidance of doubt, allows others to copy, distribute, and transmit the Work under the following conditions:
- Attribution—other users must attribute the Work in the manner specified by the author as indicated on the journal Web site; with the understanding that the above condition can be waived with permission from the Author and that where the Work or any of its elements is in the public domain under applicable law, that status is in no way affected by the license.
- The Author is able to enter into separate, additional contractual arrangements for the nonexclusive distribution of the journal's published version of the Work (e.g., post it to an institutional repository or publish it in a book), as long as there is provided in the document an acknowledgment of its initial publication in this journal.
- Authors are permitted and encouraged to post online a prepublication manuscript (but not the Publisher’s final formatted PDF version of the Work) in institutional repositories or on their Websites prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work. Any such posting made before acceptance and publication of the Work shall be updated upon publication to include a reference to the Publisher-assigned DOI (Digital Object Identifier) and a link to the online abstract for the final published Work in the Journal.
- Upon Publisher’s request, the Author agrees to furnish promptly to Publisher, at the Author’s own expense, written evidence of the permissions, licenses, and consents for use of third-party material included within the Work, except as determined by Publisher to be covered by the principles of Fair Use.
- The Author represents and warrants that:
- the Work is the Author’s original work;
- the Author has not transferred, and will not transfer, exclusive rights in the Work to any third party;
- the Work is not pending review or under consideration by another publisher;
- the Work has not previously been published;
- the Work contains no misrepresentation or infringement of the Work or property of other authors or third parties; and
- the Work contains no libel, invasion of privacy, or other unlawful matter.
- The Author agrees to indemnify and hold Publisher harmless from the Author’s breach of the representations and warranties contained in Paragraph 6 above, as well as any claim or proceeding relating to Publisher’s use and publication of any content contained in the Work, including third-party content.
Enforcement of copyright
The IJMS takes the protection of copyright very seriously.
If the IJMS discovers that you have used its copyright materials in contravention of the license above, the IJMS may bring legal proceedings against you seeking reparation and an injunction to stop you using those materials. You could also be ordered to pay legal costs.
If you become aware of any use of the IJMS' copyright materials that contravenes or may contravene the license above, please report this by email to firstname.lastname@example.org
If you become aware of any material on the website that you believe infringes your or any other person's copyright, please report this by email to email@example.com