Impact of Educational Program about Iron Chelation Therapy on the Quality of Life for Thalassemic Children

El-Said Zaghamir, Donia; Hanie El-Kazaz, Rehab; Ahmed Khalil Morsy, Amal; Ahmed Elmazahy, Momahmed Mohamed

doi:10.21608/pssjn.2019.66511

Impact of Educational Program about Iron Chelation Therapy on the Quality of Life for Thalassemic Children

Document Type : Original Article

Authors

¹ Assist lecturer of pediatric nursing,Faculty of Nursing, Port Said University

² Assistant Professor of Pediatric Nursing Department, Faculty of Nursing, Port Said University

³ Professor of Pediatric nursing Faculty of Nursing, Port said University

⁴ Pediatric Medicine Faculty of Medicine Elazhar University

10.21608/pssjn.2019.66511

Abstract

Background: Thalassemia is the most common genetic disorder in Egypt, It is measured a fetal disease if proper chelation treatment is not established. The introduction of chelating agents able to removing extreme iron from the body has noticeably increased life expectancy time and improving the in general quality of life.
the study aimed to identify the impact of an educational program about iron chelation therapy on the QoL for thalassemic children.Quasi-experimental research design was used , a convenient sample of 50 thalassemic children on chelation therapy, and their family caregiver at the pediatrics outpatient department at the Health Insurance Agency Hospital in Damietta city for 12 months from April 2015 to April 2016. The tools of data collection were an interview questionnaire for knowledge, and the pediatric QoL tool, child and parent versions. The resultsrevealed that there were statistically significant improvement of children's knowledge with P-value = 0.001. Subsequently, statistically significant improvement of children's quality of life at follow up compared with pre-intervention phase. The study recommended repetition of this research on large sample and in various places in Egypt and make the children with Thalassemia the focus of the health care team through designing several educational program and update posters and procures that improving their knowledge and then and then release improve in the quality of life of thalassemic children.

Keywords

References

Abdul-Zahra H.A., Hassan M.K., and Ahmed B.A. (2016): Health-related Quality of Life in Children and Adolescents With β-Thalassemia Major on Different Iron Chelators in Basra, Iraq. J PediatrHematol Oncol.;38(7):503-11. doi: 10.1097/MPH. 0000000000000663

Abu Samra O., Auda W., Kamhawy H., and Al-Tonbary Y. (2015): Impact of educational programme regarding chelation therapy on the quality of life for B-thalassemia major children. Hematology.;20(5):297-303. doi: 10.1179/1607845414Y. 0000000197. Epub 2014 Sep 2.

Adam S., Afifi H., Thomas M., Magdy P., and El-Kamah G. (2017): Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt. Hemoglobin.;41(1):16-20. doi: 10.1080/03630269.2017.1312434. Epub 2017 Apr 25

Al-Mosooi K.M. (2011):Assessment of health quality of life upon school age children (6-12) with Thalassemia at Thalassemia center in Ibn – Baladi Hospital Thi-Qar Medical Journal (TQMJ); 5 (2): 100 – 108.

Brittenham G.M., Nathan D.G., Olivieri N.F., Pippard M.J., and Weatherall D.J. (2005): Deferiprone versus desferrioxamine in thalassemia and validation & utility. Lancet; 11:361:183-84.

Cianciulli P. (2010): Iron Chelation Therapy in thalassemia syndrome s. Mediterranean Journal of hematology and infectious disease;1(1). Available at http://www.mjhid. org/article/view/529/html 12 .Accessed at April 13, 2013

Dahlui M., Hishamshah M. and Rahman J. (2010): Quality of life in transfusion dependant thalassemia patients on desferrioxamine treatment 50 (8): 794-799.

Hassan E.A. (2010): Impact of educational program on adherence of thalassemia children with iron chelation therapy in hematology clinics. Published Doctoral Dissertation, Faculty of Nursing, Cairo University, Cairo

Ismail A., Cambell M.J., Ibrhaim H.M., and Jones G. (2006): Health related quality of life in Malaysian children with Thalassemia health and quality of life outcomes J. Adolesc.; 27: 213 – 216. JAMA; 277: 1787 – 1793.

McCance K. and Grey T. (2010): Altered cellular and tissue biology, 6th ed., Mosby com; P. 952

Rafii Z., Ahmadi F., Nourbakhsh S.M., and Hajizadeh E. (2016): The Effects of an Orientation Program on Quality of Life of Patients with Thalassemia: a Quasi-Experimental Study. J Caring Sci.;5(3):223-229. eCollection 2016 Sep.

Shaligram D., Girimajis and Chaturved S.K. (2007): Psychological problems and quality of life in children with Thalassemia Indian. Journal of Pediatrics; 74(8): 727 – 730. .

Sharma S., Seth B., Jawade P., Ingale M., and Setia M.S. (2017): Quality of Life in Children with Thalassemia and their Caregivers in India. Indian J Pediatr.;84(3):188-194. doi: 10.1007/s12098-016-2267-z. Epub 2016 Dec 7

Varni J.W., Seid M., and Kurtin P.S. (2001): reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care; 39 (8): 800-12

Zorac J., Alpern E., Brown L., Loomes K., Marino B., Mollen C., and Raffini J. (2013): Clinical handbook of pediatrics, 5th ed., Philadelphia: Lippincott Williams and Wilkins; p. 431