Academic journal article Central European Journal of Public Health

Health Related Quality of Life in Children with Thalassaemia Assessed on the Basis of SF-20 Questionnaire in Yazd, Iran: A Case-Control Study

Academic journal article Central European Journal of Public Health

Health Related Quality of Life in Children with Thalassaemia Assessed on the Basis of SF-20 Questionnaire in Yazd, Iran: A Case-Control Study

Article excerpt

SUMMARY

Backgrounds: Thalassaemia is becoming serious public health problem throughout the Mediterranean region, Middle East, Indian subcontinents and also South East Asia. Its' global prevalence is about 2 per 1,000 newborns while its' prevalence in Iran is 8-4 per 1,000 newborns. The aim of this study was to compare the Health Related Quality of Life (HRQOL) of thalassaemia patients with the HRQOL of healthy children in terms of essential core domains for pediatric HRQOL measurement.

Methods: This cross sectional study has been done in Yazd, Iran. 60 thalassaemia patients were selected randomly as case group and 120 healthy children as control group who were matched with respect to age and gender. The health related quality of life was measured with a self - administrated short - form questionnaire of Medical Outcomes study (SF-20). The SF-20 measure contains three dimensions about function (physical, social and role) and well-being (mental health, health perception and pain).

Results: The results of this study showed significant difference between all dimension of SF-20 and QOL of patients in the case and control group (p<0.001). The QOL in the case group was 75.05 (SD=9.38), but in the control group was 93.4 (SD=6.42) out of 100.

Conclusions: The effect of thalassaemia on the HRQOL in affected children has been related to reduction of their physical, social and mental capabilities.

Key words: quality of life, SF-20, thalassaemia

BACKGROUND

Thalassaemia is a genetic blood disorder which can be fatal if not treated properly. It is characterized by no or low production of alpha or beta globin chains which form part of the hemoglobin structure in the red blood cells (1). The thalassaemia is becoming serious public health problem throughout the Mediterranean region, Middle East, Indian subcontinent and South East Asia (2, 3). Its' global prevalence is about 2 per 1,000 newborns while its' prevalence in Iran is 8-4 per 1,000 births. Children with thalassaemia will appear well at birth, but anemia develops and progressively worses due to partial or total absence of hemoglobin, If this condition is left untreated, it may lead to an early (2, 5). For children that survived, this condition impose serious implications on their health and related quality of life. Typically these children have to undergo blood transfusions at least once a month depending on the severity of illness. At these times have to be hospitalized for a complete day .They also have to get desferal injections in iron chelation therapy to remove excess iron in their body because of frequent blood transfusions (2, 5,6).

Health Related Quality of Life (HRQOL) measurement is a multidimensional concept that focuses on the impact of disease and its' treatment in well being of an individual. The measures have been seen as a way for assessment of patients' perspectives about their disease and related treatments, their perceived needs for healthcare and their preferences for treatment and disease outcomes (7). However, a systematic review reports limited use of HRQOL measures in pediatric clinical trials or clinical practice (8). The review identified 18 trials which includes assessment of HRQOL on a variety of pediatric diseases but surprisingly there was not any study about thalassaemia, despite a complex nature of the illness.

An extensive and rigorous searches were done on websites and electronic databases that led to finding one paper dealing with HRQOL in adults with thalassaemia and another one about children.

Most of the research about thalassaemia involved interviews with patients, carers, nurses and doctors with the focus on strategy management of thalassaemia patients and their parents, the attitudes and expectations of these patients, counselling strategies for patients, parents and siblings and screening programs for thalassaemia. A recent study that was done on adults with thalassaemia suggests that treatment and cultural differences did not have a major effect on the quality of life in Cypriot thalassaemia patients (9). …

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