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Quality Of Life in Thalassemia Patients

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Author(s): Ruba Ishtiaq | Sarah Hasan Siddiqui, | Raihan Sajid

Journal: International Journal of Collaborative Research on Internal Medicine & Public Health
ISSN 1840-4529

Volume: 3;
Issue: 3;
Start page: 203;
Date: 2011;
Original page

Keywords: Quality of life | Thalassemia | Emotional functioning | Financial burden | Social stress | Physical impairment

ABSTRACT
Background: Thalassemia is a recessively inherited and most common hemoglobin disorder in Pakistanwith 4000 – 5000 babies born annually with the disease. New treatment modalities have now increasedthe life expectancy of these patients but they are now facing newer challenges of developing intoindependent, autonomuous, functioning and healthy adults. Assessment of Quality of life (QoL) in thesepatients gives a more holistic view of their overall general health and various domains of QoL have beenreported to be affected in these patients.Objective: To assess the Quality of Life (QoL) in thalassemia patients.Study Design: Cross sectional study conducted in Karachi, Lahore and Quetta centers of FatimidFoundation. Data of 101 thalassemia patients ageing between 6 – 21 years were collected by Convenientmethod of sampling during their blood transfusion session. Preformed QoL questionnaire modified fromSF-36 QoL questionnaire was administered to the subjects and collected back upon completion. Itcontained questions regarding the patients’ view about their family, personal and social life, theiremotional functioning and their concerns about their future because of their illness. Responses wereentered and analyzed using SPSS.Results: The mean age of the subjects was 10.57 years. (Range 6 to 16). All of the subjects weretransfusion dependent. A little less than one third of the patients felt that their health was slightly worse ascompared to last year. More than 44% of the patients had the feeling of loneliness secondary to theirdisease. Parents of 35.6% of the children at times did not allow their children to play because of theirdisease. Considering the social life of these patients, 27% stated that because of their disease, they oftenhave difficulty in mingling with children of their age. Around 71% of the patients reported that at some orall times they were worried about their future life and career.Conclusion: Life of these patients actually differs from that of normal subjects in that their life is difficultand more complex. Having physical impairments, social stresses, financial burdens and problems withtheir education and career makes them very much vulnerable to psychological trauma very early in theirlife. All of this creates a hindrance in their way of developing into autonomous functioning adults.
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