Quality of Life Among Thalassemia Children Patients in the Gaza Strip
American Journal of Nursing Science
Volume 5, Issue 3, June 2016, Pages: 106-113
Received: May 16, 2016; Accepted: May 24, 2016; Published: Jun. 4, 2016
Views 3382      Downloads 128
Author
Yousef Ibrahim Aljeesh, College of Nursing, Islamic University of Gaza, Gaza Strip, Palestine
Article Tools
Follow on us
Abstract
This study aimed to assess the quality of life of children (3-12 years) diagnosed with Thalassemia in Gaza Strip. A descriptive, analytical, cross-sectional design was used. All children 3-12 years old who were diagnosed with thalassemia and live in GS were included in the study (75 cases) with response rate (81.3%). Participants were interviewed by the researcher and completed the questionnaire which focused on quality of life of chronic diseases and included five domains. These domains are physical health, psychological health, social relationships, environment health and personal safety. Validity and reliability of the instrument were tested and the total instrument reliability test (Cronbach's Alpha) was 0.767. The scores for the study domains ranged between 2.81 for personal security domain and 3.66 for environmental health domain. Moreover, the study domains did not show statistically significant difference when compared by sex, living places, monthly income the relationship between parents and recurrent hospitalization. The findings of this study suggest the need of children diagnosed with thalassemia for support in all study domains. Health professionals need to work to minimize the disease's burdens. The current study calls the attention of health policy makers for new policies and new roles for the community health nurses and social workers. The study also revealed that there is a bad need to pay more attention when caring and dealing with thalassemia patients. Special food supplementation should be available in order to improve their physical health, more psychological support from their families and the society is needed. In addition, there is a need to provide safe environment and to enhance personal safety of these children.
Keywords
Chronic Diseases, Thalassemia, Quality of Life, Gaza Strip
To cite this article
Yousef Ibrahim Aljeesh, Quality of Life Among Thalassemia Children Patients in the Gaza Strip, American Journal of Nursing Science. Vol. 5, No. 3, 2016, pp. 106-113. doi: 10.11648/j.ajns.20160503.15
Copyright
Copyright © 2016 Authors retain the copyright of this article.
This article is an open access article distributed under the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
References
[1]
Higgs DR, Engel JD, Stamatoyannopoulos G. (2012): Thalassaemia. The Lancet; 379(9813): 373-83.
[2]
Thavorncharoensap M, Torcharus K, Nuchprayoon I, Riewpaiboon A, Indaratna K, Ubol B-o. (2010): Factors affecting health-related quality of life in Thai children with thalassemia. BMC Blood disorders; 10(1): 1.
[3]
De Sanctis V, Roos M, Gasser T, Fortini M, Raiola G, Galati MC. (2006): Impact of long-term iron chelation therapy on growth and endocrine functions in thalassaemia. Journal of pediatric endocrinology & metabolism: JPEM; 19(4): 471-80.
[4]
Ghaffari J, Vahidshahi K, Kosaryan M, Parvinnejad N, Mahdavi M, Karami H. (2008): Nitroblue tetrazolium test in patients with beta-thalassemia major. Saudi medical journal; 29(11): 1601-5.
[5]
Cappellini M-D, Cohen A, Eleftheriou A, Piga A, Porter J, Taher A. (2008): Guidelines for the clinical management of thalassaemia: Thalassaemia International Federation, Nicosia (CY).
[6]
Bernadette. M, Matthew D. (2008): Global epidemiology of haemoglobin disorders and derived service indicators. Bulletin of the World Health Organization [Internet]. May, 07, 2015; 86(6): [417-96 pp.].
[7]
Sirdah MM, Sievertsen J, Al-Yazji MS, Tarazi IS, Al-Haddad RM, Horstmann RD, et al. (2013): The spectrum of β-thalassemia mutations in Gaza Strip, Palestine. Blood Cells, Molecules, and Diseases; 50(4): 247-51.
[8]
Harara Z. (2006): Occurrence of Hereditary Hemochromatosis Among β- Thalassemia Intermediate and β-Thalassemia Minor Subjects in Gaza Stri –Palestine. Gaza, Palestine: Islamic University of Gaza.
[9]
Sirdah M, Bilto YY, el Jabour S, Najjar K. (1998): Screening secondary school students in the Gaza strip for beta-thalassaemia trait. Clininical and Laboratory Haematology; 20(5): 279-83.
[10]
Abu-Muammar A. (2015): Assessment of the Quality of Life among Thalassemia children patients in the Gaza Strip. Jerusalem, Palestine Al-Quds University.
[11]
Cao A, Galanello R. (2010). Beta-thalassemia. Genetics in Medicine; 12(2): 61-76.
[12]
Haberman M, Bush N, Young K, Sullivan KM, editors. (1992): Quality of life of adult long-term survivors of bone marrow transplantation: a qualitative analysis of narrative data. Oncology nursing forum.
[13]
Berntsson LT, Kohler L. (2001): Quality of life among children aged 2–17 years in the five Nordic countries. The European Journal of Public Health; 11(4): 437-45.
[14]
Garralda M, Jameson R, Reynolds J, Postlethwaite R. (1988): Psychiatric adjustment in children with chronic renal failure. Journal of Child Psychology and Psychiatry; 29(1): 79-90.
[15]
Gerson AC, Riley A, Fivush BA, Pham N, Fiorenza J, Robertson J, et al. (2005): Assessing health status and health care utilization in adolescents with chronic kidney disease. Journal of the American Society of Nephrology; 16(5): 1427-32.
[16]
Fayers P, Machin D. (2013): Quality of life: the assessment, analysis and interpretation of patient-reported outcomes: John Wiley & Sons.
[17]
Felce D, Perry J. (1995): Quality of life: Its definition and measurement. Research in developmental disabilities; 16(1): 51-74.
[18]
Borgna-Pignatti C, Rugolotto S, De Stefano P, Zhao H, Cappellini MD, Del Vecchio GC, et al. (2004): Survival and complications in patients with thalassemia major treated with transfusion and deferoxamine. haematologica; 89(10): 1187-93.
[19]
Abetz L, Baladi J-F, Jones P, Rofail D. (2006): The impact of iron overload and its treatment on quality of life: results from a literature review. Health and Quality of Life Outcomes; 4(1): 1.
[20]
Saban KL, Stroupe KT, Bryant FB, Reda DJ, Browning MM, Hynes DM. (2008): Comparison of health-related quality of life measures for chronic renal failure: quality of well-being scale, short-form-6D, and the kidney disease quality of life instrument. Quality of Life Research; 17(8): 1103-15.
[21]
Ministry of Health. (2013): Health and Population Report. Gaza Strip, Palestine.
[22]
Dawson B, Trapp RG. (2004): Basic & clinical biostatistics. Basic & clinical biostatistics: Lange Medical Books; McGraw-Hill.
[23]
Youssef DM, Fawzy Mohammad F, Ahmed Fathy A, Aly Abdelbasset M. (2013): Assessment of Hepatic and Pancreatic Iron Overload in Pediatric Beta-Thalassemic Major Patients by Weighted Gradient Echo Magnetic Resonance Imaging. ISRN hematology.
[24]
Wang C-H, Wu K-H, Tsai F-J, Peng C-T, Tsai C-H. (2006): Comparison of Oral and Subcutaneous Iron Chelation Therapies in the Prevention of Major Endocrinopathies in β-Thalassemia Major Patients. Hemoglobin; 30(2): 257-62.
[25]
Neufeld EJ. (2006): Oral chelators deferasirox and deferiprone for transfusional iron overload in thalassemia major: new data, new questions. Blood; 107(9): 3436-41.
[26]
Safizadeh H, Farahmandinia Z. (2012): Quality of life in patients with thalassemia major and intermedia in kerman-iran (IR). Mediterranean journal of hematology and infectious diseases; 4(1).
[27]
Ayoub MD, Radi SA, Azab AM, Abulaban AA, Balkhoyor AH, Seif-eleslam WB, et al. (2013): Quality of life among children with beta-thalassemia major treated in Western Saudi Arabia. Saudi medical journal; 34(12): 1281-6.
[28]
AzarKeyvan A, Hajibeigi B, Lankarani MM, Namdari M, Assaric S. (2009): Associates of poor physical and mental health-related quality of life in beta thalassemia-major/intermedia. Journal of Research in Medical Sciences; 14(6): 349-55.
[29]
Gharaibeh H, Amarneh BH, Zamzam SZ. (2009): The psychological burden of patients with beta thalassemia major in Syria. Pediatrics International; 51(5): 630-6.
[30]
Majdi M, Marzabadi A. (2009): Quality of life in Iranian Beta-thalassemia major patients of‎ southern coastwise of the Caspian Sea. International Journal of Behavioral Sciences; 2(4): 325-32.
[31]
Ismail A, Campbell MJ, Ibrahim HM, Jones GL. (2006): Health related quality of life in Malaysian children with thalassaemia. Health and Quality of life Outcomes; 4(1): 1.
[32]
Dubey A, Parakh A, Dublish S. (2008): Current trends in the management of beta thalassemia. The Indian Journal of Pediatrics; 75(7): 739-43.
[33]
Musallam K, Cappellini MD, Taher A. (2008): Challenges associated with prolonged survival of patients with thalassemia: transitioning from childhood to adulthood. Pediatrics; 121(5): e1426-e9.
[34]
Roccella M, Leggio L, Parisi L, Turdo G, Testa D. (2005): The quality of life in developing age subjects with chronic renal diseases. Minerva pediatrica; 57(3): 119-28.
[35]
Abdellatif R. (1992): The Contribution of the Society in Organizing the Design of Social Welfare Programs for Children with Kidney Failure. The fifth scientific conference; Faculty of Social Work, University of Cairo, Fayoum.
[36]
Pakbaz Z., Treadwell M, Ymashita R, Quirolo K, Foote D, Quill L, et al. (2005): Quality of life in patients with thalassemia intermedia compared to thalassemia major. Annals of the New York Academy of Sciences; 1054(1): 457-61.
ADDRESS
Science Publishing Group
1 Rockefeller Plaza,
10th and 11th Floors,
New York, NY 10020
U.S.A.
Tel: (001)347-983-5186