IMPACT OF THALASSEMIA MAJOR ON PATIENTS

Objectives: The objectives of this study were to examine the level of awarenessof the parents regarding Thalassemia Major; the cost of treatment of Thalassemia Major Patientsand the sufferings it brings to the families; the social problems faced by patients’ families; toidentify the barriers patients’ families face in the treatment of Thalassemia child. Study Design:Descriptive study. Setting: Four Thalassemic Centers (i) Thalassemia / Hemophilia Centre, TheChildren’s Hospital & the Institute of Child Health Multan (ii) Fatimid Foundation Multan (iii) AmnaBlood Foundation (iv) Minhajul Quran Multan. Period: January-2013 to June-2013. Methods:A sample of 500 respondents was drawn from the total population and structured interviewschedule was administrated. Data were analyzed and interpreted by using SPSS (StatisticalPackage for Social Sciences) 19.0 version software. The structured interview was discussedwith two experts of the Sociology Department and two Senior Doctors (>8 years’ experiences)working in the Thalassemia centers and Government Health Institutions. It was revised toincorporate recommended improvements. Descriptive and inferential statistics were applied toanalyze the data that includes: frequency, percent, mean, standard deviations. Results: Dataindicated that 100(20.0%) respondents were patients’ father while 329(65.8%) were mothersand 71(14.2%) were close relatives. Of the 500 respondents, 306(61.2%) were married to theirfirst cousins, 91(18.2%) of the respondents were married to their second cousins, 34(6.8%) ofthe respondents married in distance relatives and 69(13.8%) of the respondents married out offamily. Conclusion: The study summarized that the health care providers should be encouragedto talk about Thalassemia as a public health problem in Pakistan and should enhance the publicawareness to eliminate the Thalassemia in Pakistan.