Assess Quality of Life of Children with Beta Thalassemia Major

Ahmed Khalil, Amal; Mahmoud Sarhan, Mohamed; Rizk Mohammed, Nagwa; Moheb Mohammed Gomah, Neveen

doi:10.21608/pssjn.2019.34698

Assess Quality of Life of Children with Beta Thalassemia Major

Document Type : Original Article

Authors

¹ Professor of Pediatric Nursing,Faculty of Nursing,Port Said University

² Professor of Pediatric Medicine, Faculty of Medicine,Mansoura University

³ Lecturer of Pediatric Nursing,Faculty of Nursing,Port Said University

⁴ Clinical Instructor at Technical Institute of Nursing, al- Azhar University in Damietta city

10.21608/pssjn.2019.34698

Abstract

Background: It is imperative to know further about QOL in children to assess and improve the care that they receive. Quality of life varies from other forms of medical assessments in that it emphases on the people's own opinions of their welfare and other features of life. Aim of study: Assess the quality of life among children with beta-thalassemia. Design: A descriptive research design was utilized in this study. Setting: the study was carried out at the outpatient hematology clinic at Mansoura University children's hospital in Dakahlia governorate. Sample: the study sample was collected from 124 children with beta thalassemia major. Results: Almost all the studied children who complied with blood transfusion had low QOL. Also, the majority compliant with chelation therapy had lowQOL. The studied thalassemic children experienced moderate QOL related to physical, emotional, and school functioning and experienced high QOL regarding social functioning. Conclusion: the highest percentage of the studied children had moderate levels of QOL. There was a statistically significant association between children's QOL and their knowledge. Moreover, there was a positive relation between children's ages and their total scores of QOL. Recommendation: regularand continuous health education programs are essential for children suffering from beta thalassemia and their mothers.

Keywords

References

Alam M. (2009): treatments of thalassemia: Treatments of thalassemia .htm; P. 2 - 4.

Amani F., Fathi A., Valizadeh M., Farazaneh E. and Ardalani G. (2015): Quality of life among Ardabil patients with beta- thalassemia major:3(11); P. 3310, 3311.

Ansari., Baghersalimi., Azarkeivan., Nojomi. And Rad H. (2014): Quality of life in patients with thalassemia major: Iranian Journal of Pediatric Hematology Oncology; 4(2);P.57.63.

Ayoub M., Radi S., Azab A. and Karij (2013): Quality of life among children with beta – thalassemia major treated in western Saudi arabia:34(12); P.1282.

Baghianimoghadam M., Sharifirad G., Rahaei Z., Baghianimoghadam B. and Heshamati H. (2011): Health related quality of life in children with thalassemia assessed on the basis of sf- 20 questionnaire in Yazd, Iran: A case- control study:19 (3); P. 102.

Baraz S., Miladinia M. and Mousavinouri E. (2015): A comparison of quality of life between adolescences with beta thalassemia major and their healthy peers:4(1); P.11090 - 1204.

Borhani F., Kargar M., Najafi., Rabori E. and Sabzevari S (2011): the effect of family -centered empowerment model on quality of school- aged children with thalassemia major: Original Article: 16(4); P.293.

Dahlui., Hishamshah., Rahman. And Aljunid (2009): Quality of life in transfusion –dependent thalassemia patients on desferrioxamine treatment: Original article: 50 (8);P. 798. 799

Elalfy M., Farid M., Labib J. and Rezkallah H. (2014): Quality of life of Egyptian b-thalassemia major children and adolescents : Egyptian journal of hematology:39(4) P. 222-226.

El Dakhakny A., Hesham M., Mohamed S. and Mohammed F (2011): Quality of life of school age thalassemia children at zagazig city: Journal of American science: 7(1); P.186.

Eliezer A., Rachmilewitz . and Giardia P. (2016) : How I treat thalassemia: www.bloodjournal.org :61(3); P. 3479.

Goulas V., Symeonidis A. and Camoutsis C. (2012): comparative effects of three iron chelation therapies on the quality of life of Greek patients with honozyges transfusion- dependent beta – thalassemia : ISRN hematology: 32(9); P.7.8.

Gupta M. and Jindal R. (2013): Quality of life in patients with thalassemia: International journal of science and research (IJSR): 5(5); P. 42.

Haghpanah S., Nasirabadi S., Ghaffarpassand F., Karami R., Mahmoodi M., Parand S. and Karim M. (2013): Quality of life among Iranian Patients with beta- thalassemia major using the sf- 36 questionaire: Original article:131(3); p.323.

Hockenberry M. and Wilson D (2013) : Essentials of pediatric nursing, the children with hematologic or immunologic dysfunction, 9th ed. United states of America. Elsevier Mosby:11(1); P. 869.

Ishfaq K. (2016): Psycho- social and economic impact of thalassemia major on patients families :https: // www.researchgate .net / publication 303812528 – psycho-social and economic impact of thalassemia major:12(8); P. 26.

Kahouei M., Kazemzadeh F., Zadeh J. and Ahmadi Z. (2016): Hierarchy of Iranian parents information needs and social seeking behavior of infants suffering blood disease: the social sciences:31(6); P. 336.

Mahmoud M. (2015): better understanding of health related quality of life in thalassemia patients related by iron chelation therapy in the united Arab emirates:63(8); P. 49.

Mazzone L., Battagial L., Andreozzi F., Romeo M. and Mazzone D. (2009): Emotional impact in β- thalassemia major children following cognitive –behavioural family therapy and quality of life of caregiving mothers: PMC, clinical practice & epidemiology in mental health:12(8); P. 3,4.

Mohammed F. (2010): Quality of life of school age thalassemic children at Zagazing city, review of literature, pathophysiology of thalassemia syndrome:55(1); P.14.

Naggrawal A., Arorams A., Dewan P. and Harish K. (2011): Essential pediatric nursing: 3rd , India, CBS publishers α ,distributors PVT. LTD, P.P; 447, 448,449, 450, 451.

Nasiri M., Hosseini S. and Shahmohammadi S. (2014): Mental health status in patient with thalassemia major in Iran: Journal of pediatrics review2(1); P.55.

Potts N. and Mandleco B. (2012): Pediatric nursing caring for children and their families, 3^rd ed. Australia: Delmar:12(1); P. 926.927.928.

Ragab L., Hamdy M., Shaheen I. and Yassin R. (2013): Blood transfusion among thalassemia patients: A single Egyptian center experience: Asia journal of transfusion science:7(1); P.33-36.

Raza S., Ishfag K. and Fazal H. (2015): social impact of thalassemia major on patients families: 2(3); P.413.

Sabry, Salama (2009): Cognitive abilities, mood changes and adaptive functioning in children with B-thalassemia:43(7); P. 245.

Safizadeh H., Farahmandinia Z., Soltaninejad S., Pourdanghan N. and Araste M. (2012): Quality of life in patient with thalassemia major and intermedia in kerman- iran : Mediterranean journal of hematology and infectious disease: 4(1) ; P.4.5.

Shanshory M., Hagag., sheble., AbdElhamed., Abd El- Bar., Al- Tonbary., Mansour., Hassan., Hamdy., Alfy., Sherief. and Sharaf, (2014) : spectrum of beta globin gene mutations in Egyptian children with B- thalassemia: Mediterranean journal of hematology and infectious disease:11(8); P. 2.

Shawky R. and Kamal T. (2011): Thalassemia intermedia: An overview, Egyptian journal of medical human genetics science direct:13(3) P. 245- 255.

Thvorncharoensap M., Torcharus K., Nuchpryoon I., Riewpaiboon A., Indaratna K. and ubol B. (2010): Factor affecting health- related quality of life in children withthalassemia, BMC blood disorders http:www. Blomedcentral.com ̷ 1471-226 ̷ 10 ̷ 1:10(1); P. 2.3.

Torcharus K. and Pankaew T. (2011): Health related quality of life in thaithalassemic children treated with iron chelation:42(4); P.953.

Varni J., Burwinkle T., katz e., Meeske K. Dickinson P (1998): The peds Q2 in pediatric cancer : reliability and validity of pediatric quality of life inventory generic core scales, multidimensional fatigue scale, and cancer module: 94 ed; p 2090- 2106.

Wilson D. and Hockenberry M. (2011): Nursing care of infants and children, 9th , china, Elsevier; P.1436, 1437, 1438, 1439.