Assessment of Quality of Life among Beta-Thalassemia Major Patients Attending the Hematology Outpatient Clinics at Cairo University Hospital

Authors

  • Mona Hamdy Department of Pediatrics, Faculty of Medicine, Cairo University, Giza, Egypt
  • Iman Hassan Draz Department of Pediatrics, Faculty of Medicine, Cairo University, Giza, Egypt
  • Inas Talaat El Sayed Department of Family Medicine, Faculty of Medicine, Cairo University, Giza, Egypt
  • Azza Ali Fahmy Ayyad Department of Pediatrics, Children Cancer Hospital Egypt 57357, Cairo, Egypt
  • Marwa Rashad Salemd Department of Public Health and Community Medicine, Faculty of Medicine, Cairo University, Giza, Egypt

DOI:

https://doi.org/10.3889/oamjms.2021.5692

Keywords:

Thalassemia major, Quality of life, Blood transfusions, Tertiary care hospital

Abstract

AIM: This paper aimed at assessing the quality of life (QoL) among beta (β)-thalassemia major patients using the short-form-36questionnaire (SF-36) and determining the factors associated with it.

METHODS: A cross-sectional study was conducted among β-thalassemia major patients who were attending the hematology outpatient clinic at Cairo University Hospital using the consecutive sampling technique. Data were collected between October 2016 and March 2017. The QoL was assessed for patients aged ≥17 years. During the study period, a total number of 112 patients were included for participation.

RESULTS: The mean age of the studied group was 18.32 ± 1.33 years. Most of the included patients (93.63%) had 1 monthly blood transfusion. The mean total score of SF-36 was 44.90 ± 7.54. Among the QoL domains of the studied patients, the “general health perception” domain was the most affected one with a mean score of (add the value of the score here), while the “vitality” domain was the least affected one. No statistically significant difference was reported between males and females regarding different QoL domains except for the “vitality” domain which mean score was significantly higher in males compared to females (p = 0.05). The age at onset of the disease and at first blood transfusion was the most documented factors to be positively correlated with the QoL among the studied patients.

CONCLUSION: This study revealed that the QoL in thalassemia major patients is compromised. QoL assessment should be performed for all thalassemia patients to determine and implement the necessary interventions that focus on the affected domains.

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References

Baraz SH, Miladinia M, Nouri EM. A comparison of quality of life between adolescences with beta thalassemia major and their healthy peers. Int J Pediatr. 2016;4(1):1195-204.

Al-Gazali L, Ali B. Mutations of a country: A mutation review of single gene disorders in the United Arab Emirates (UAE). Hum Mutat. 2010;31(5):505-20. https://doi.org/10.1002/humu.21232 PMid:20437613

Kim S, Tridane A. Thalassemia in the United Arab Emirates: Why it can be prevented but not eradicated. PLoS One. 2017;12(1):e0170485. https://doi.org/10.1371/journal.pone.0170485 PMid:28135306

Rachmilewitz EA, Giardina PJ. How I treat thalassemia. Blood. 2011;118(2):3479-88.

Safizadeh H, Farahmandinia Z, Nejad SS, Pourdamghan N, Araste M. Quality of life in patients with thalassemia major and intermedia in Kerman-Iran (I.R.). Mediterr J Hematol Infect Dis. 2012;4(1):e2012058. https://doi.org/10.4084/mjhid.2012.058 PMid:23170187

Jameel T, Suliman IM, Rehman D. The compromised quality of life in β- thalassemia major children in non-urban setup in a developing country. J Hematol Thrombo Dis. 2016;4:245. https://doi.org/10.4172/2329-8790.1000245

Elalfya MS, Faridb MN, Labiba JH, Allahc HK. Quality of life of Egyptian b thalassemia major children and adolescents. Egypt J Haematol. 2014;39(4):222-6.

Goulas V, Kourakli-Symeonidis A, Camoutsis C. Comparative effects of three iron chelation therapies on the quality of life of greek patients with homozygous transfusion-dependent beta-thalassemia. Hematology. 2012;2012:139862. https://doi.org/10.5402/2012/139862 PMid:23316378

Gollo G, Savioli G, Balocco M, Venturino C, Boeri E, Costantini M, et al. Changes in the quality of life of people with thalassemia major between 2001 and 2009. Patient Prefer Adherence 2013;7:231 6. https://doi.org/10.2147/ppa.s42133 PMid:23569362

Sheikh KA, El-Setouhy M, Yagoub U, Alsanosy R, Ahmed Z. Khat chewing and health related quality of life: Cross-sectional study in Jazan region, kingdom of Saudi Arabia. Health Qual Life Outcomes. 2014;12:44. https://doi.org/10.1186/1477-7525-12-44 PMid:24708622

Adam S, Afifi H, Thomas M, Magdy P, El-Kamah G. Quality of Life outcomes in a pediatric thalassemia population in Egypt. Hemoglobin. 2017;41(1):16-20. https://doi.org/10.1080/03630269.2017.1312434

Musallam KM, Khoury B, Abi-Habib R, Bazzi L, Succar J, Halawi R, et al. Health-related quality of life in adults with transfusion-independent thalassaemia intermedia compared to regularly transfused thalassaemia major: New insights. Eur J Haematol. 2011;87:73-9. https://doi.org/10.1111/j.1600-0609.2011.01623.x PMid:21480999

Dhirar N, Khandekar J, Bachani D, Mahto D. Thalassemia Major: How do we improve quality of life? Springerplus. 2016;22(1):1895. https://doi.org/10.1186/s40064-016-3568-4 PMid:27843752

Adib-Hajbaghery M, Ahmadi M, Poormansouri S. Health related quality of life, depression, anxiety and stress in patients with beta-thalassemia major. Iran J Pediatr Hematol Oncol 2015;5(4):193-205. https://doi.org/10.1037/t67711-000 PMid:26985352

Dehaghi E, Rasooli LB, Farsani SM. Quality of life among patients with beta-thalassemia major in Shahrekord city, Iran. Int J Epidemiol Res 2016;3(4):324-8.

Hassan RH, Eldegla H, Elmorsy F, Eldars M. Clinical and microbiological characteristics of healthcare-associated infections in a tertiary care pediatric hospital. Egypt Pediatr Assoc Gazette. 2017;65(4):127-31. https://doi.org/10.1016/j. epag.2017.09.001

Forni GL, PuntoniM, Boeri E, Terenzani L, Balocco M. The influence of treatment in specialized centers on survival of patients with thalassemia major. Am J Hematol 2009;84(5):317- 8. https://doi.org/10.1002/ajh.21398 PMid:19396857

Khani H, Majdi MR, Marzabadi EA, Montazeri A, Ghorbani A, Ramezani M. Quality of life in Iranian Beta-thalassemia major patients of Southern coastwise of the Caspian Sea. JBS. 2009;4(2):325-32. https://doi.org/10.26719/2012.18.5.539

Ansari Sh, Baghersalimi A, Azarkeivan A, Nojomi M, Rad AH. Quality of life in patients with thalassemia major. Iran J Ped Hematol Oncol. 2014;4:57-63.

El Dakhakhny AM, Hesham MA, Mohamed SE, Mohammad FN. Quality of life of school age thalassemic children at Zagazig city. J Am Sci 2011;7:186-197.

Caocci G, Efficace F, Ciotti F, Roncarolo MG, Vacca A, Piras E, et al. Health related quality of life in Middle Eastern children with beta thalassemia. BMC Blood Disord. 2012;12(1):6. https://doi.org/10.1186/1471-2326-12-6 PMid:22726530

Mikelli A, Tsiantis J. Brief report. Depressive symptoms and quality of life in adolescents with b-thalassaemia. J Adolesc 2004;27(2):213-6. https://doi.org/10.1016/j.adolescence.2003.11.011 PMid:15023520

Sazlina SG, Asauji YM, Juni MH. Predictors of health related quality of life among children and adolescents with beta thalassemia in three hospitals in Malaysia: A cross sectional study. Int J Public Health Clin Sci. 2015;(2):1-2.

Saha R, Misra R, Saha I. Health related quality of life and its predictors among Bengali Thalassemic children admitted to a tertiary care hospital. Indian J Pediatr. 2015;82(10):909-16. https://doi.org/10.1007/s12098-014-1670-6 PMid:25712005

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Published

2021-02-21

How to Cite

1.
Hamdy M, Draz IH, El Sayed IT, Ayyad AAF, Salemd MR. Assessment of Quality of Life among Beta-Thalassemia Major Patients Attending the Hematology Outpatient Clinics at Cairo University Hospital. Open Access Maced J Med Sci [Internet]. 2021 Feb. 21 [cited 2021 May 9];9(E):156-60. Available from: https://oamjms.eu/index.php/mjms/article/view/5692

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Public Health Disease Control

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