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Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt.

Publication ,  Journal Article
Adam, S; Afifi, H; Thomas, M; Magdy, P; El-Kamah, G
Published in: Hemoglobin
January 2017

Thalassemia is a disorder of hemoglobin (Hb) synthesis characterized by chronic hemolysis. In β-thalassemias major (β-TM), patients require regular transfusion at an early age due to severe anemia. Subsequently, intensive chelation therapy is initiated to mitigate the effects of the resultant iron overload. Clinical disease burden and the demanding treatment can affect health-related quality of life (HRQoL) outcomes in this population. The aim of this study was to assess HRQoL outcomes in Egyptian pediatric thalassemia patients. Patients were enrolled simultaneously from the hematology clinic at the National Research Institute in Cairo, Egypt. The Arabic version of SF36 tool was used to assess HRQoL outcomes. Socioeconomic data were collected by patient and parent interviews. Clinical data were collected by review of medical records. One hundred and thirty patients and 60 controls were enrolled, with a mean age of 5.4 ± 3.2 years and 6.3 ± 3.0, respectively. The HRQoL outcome scores were lower in all domains in the thalassemia group compared to the control group (p = 0.0001). Transfusion-dependent (TD) patients had lower HRQoL scores compared to nontransfusion-dependent (NTD) patients (p = 0.0001). Patient education and maternal education were independently associated with better HRQoL scores (p = 0.007, p = 0.028, respectively). Residents of rural areas reported lower scores compared to urban residents (p = 0.026). Thalassemia was associated with lower HRQoL scores, in all domains, compared to HRQoL in unaffected controls. Chronic transfusion independence, patient education, and maternal education were all associated with higher HRQoL scores. Psychological, social, and economic support for families with thalassemia are all essential tools to improve HRQoL outcomes.

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Published In

Hemoglobin

DOI

EISSN

1532-432X

Publication Date

January 2017

Volume

41

Issue

1

Start / End Page

16 / 20

Location

England

Related Subject Headings

  • beta-Thalassemia
  • Thalassemia
  • Socioeconomic Factors
  • Risk Factors
  • Quality of Life
  • Patient Outcome Assessment
  • Male
  • Infant, Newborn
  • Infant
  • Immunology
 

Citation

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ICMJE
MLA
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Adam, S., Afifi, H., Thomas, M., Magdy, P., & El-Kamah, G. (2017). Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt. Hemoglobin, 41(1), 16–20. https://doi.org/10.1080/03630269.2017.1312434
Adam, Soheir, Hanan Afifi, Manal Thomas, Phoebe Magdy, and Ghada El-Kamah. “Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt.Hemoglobin 41, no. 1 (January 2017): 16–20. https://doi.org/10.1080/03630269.2017.1312434.
Adam S, Afifi H, Thomas M, Magdy P, El-Kamah G. Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt. Hemoglobin. 2017 Jan;41(1):16–20.
Adam, Soheir, et al. “Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt.Hemoglobin, vol. 41, no. 1, Jan. 2017, pp. 16–20. Pubmed, doi:10.1080/03630269.2017.1312434.
Adam S, Afifi H, Thomas M, Magdy P, El-Kamah G. Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt. Hemoglobin. 2017 Jan;41(1):16–20.

Published In

Hemoglobin

DOI

EISSN

1532-432X

Publication Date

January 2017

Volume

41

Issue

1

Start / End Page

16 / 20

Location

England

Related Subject Headings

  • beta-Thalassemia
  • Thalassemia
  • Socioeconomic Factors
  • Risk Factors
  • Quality of Life
  • Patient Outcome Assessment
  • Male
  • Infant, Newborn
  • Infant
  • Immunology