title: Quality of life in patients with thalassemia major in a developing country.
abstract: OBJECTIVE
  To determine the problems faced by thalassemic patients in their personal, psychological and social life.
  
  
  METHODS
  A cross-sectional multi-centre survey.
  
  
  METHODS
  Karachi, Lahore and Quetta Centres of Fatimid Foundation, from October 2009 to October 2010.
  
  
  METHODS
  An indigenously developed Qualifty of Life (QoL) questionnaire modified from SF-36 questionnaire was administered to 101 transfusion dependent subjects suffering from thalassemia major. Variables were analyzed using SPSS version 15 for descriptive statistics.
  
  
  RESULTS
  The mean age of the subjects was 10.5 years ranging from 6 - 21 years. Less than one third of the patients felt that their health was slightly worse as compared to last year. Forty five (44%) of the patients felt loneliness due to their disease. Parents of 36 (35.6%) of the children at times did not allow their children to play because of their disease. Twenty eight (27.7%) stated difficulty in mingling with children of their age. Seventy one (70.3%) of the patients reported that at some or all times they were worried about their future life and career while 70 (69.3%) admitted being taken extra care of by their friends and 56 (55.4%) by their teachers.
  
  
  CONCLUSIONS
  The quality of life of surveyed thalassemic patients was immensely affected. Having physical impairments, social stresses, financial burdens and problems with their education and career make them very much vulnerable to psychological trauma very early in their life. All of this creates a hindrance in their way of developing into autonomous functioning adults.
authors: Department of Medicine, The Aga Khan University Hospital, Karachi.
authors: Sarah H
authors: SH
authors: Siddiqui
authors: Department of Medicine, Civil Hospital, Karachi.
authors: Ruba
authors: R
authors: Ishtiaq
authors: Department of Biochemistry, Shaheed Mohtarma Benazir Bhutto Medical College, Lyari, Karachi.
authors: Faiza
authors: F
authors: Sajid
authors: Department of Pathology, Al-Faisal University, Riyadh, Saudi Arabia.
authors: Raihan
authors: R
authors: Sajid
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D055815:Young Adult; D017086:beta-Thalassemia / Q000175:diagnosis / Q000523:psychology*