How Young adults with Thalassaemia major feel and what they want?

Abstract

INTRODUCTION: During last few decades with introduction of regular blood transfusion and effective iron chelating therapy, life expectancy of Thalassaemia major patients has improved. There is little data regarding quality of life of these patients. METHODS: Prospective quantitative and qualitative study was carried out at Ragama and Kurunegala with transfusion dependent patients of 16 years or older during 2011. SF-36, Becks depression inventory, GHQ-30 and in-depth interviews were used. RESULTS: Of 37 patients (19 females) 64% had at least grade 11 education. Median age was 20(25ch=17, 75th=22] years. Forty percent girls and 33% of boys told illness had a negative impact on romantic relationships. Forty four percent boys, 10.5% girls wanted to marry. Thirty three percent boys and 5% girls wanted to have children. Seventy percent girls and 56% boys wanted to engage in an occupation. SF-36 (Cronbach alpha=0.88) analysis, found that 66% thought they get sick easily and 70% thought they were not healthy. But 70% thought their health would not get worse. Limitation of activities was seen (highly active=64%, moderately active=18%). But 81% did not limit routines and 61% had no routine work difficulty. Seventy seven percent had good life satisfaction although 39% felt a great tiredness. Becks depression inventory reported 31% (95%CI=19-48J had reduced sleep and 26% (95%CI=14-42) had disturbed sleep. Mild depression was seen in 5.4%. CONCLUSIONS: Patients with thalassaemia want to live a normal life like healthy people. They seem to have a satisfactory quality of life.