This document summarizes a study examining the quality of life and social expectations of young adults with thalassaemia major in Sri Lanka. The study found that 64% of patients had an education level above Ordinary Level. Using questionnaires, the study found that over 60% of patients reported reduced physical functioning and over 20% reported reduced role physical. 24% of patients reported feeling fed up with life overall. While 51% were female, social expectations like getting married and having children differed between males and females. The conclusion states that thalassaemic patients want to live normal lives but appear to be more mentally stable than physically able to do so, and these aspects should be examined further.

1. How Young adults with Thalassaemia major feel and
what they want?
AAN Nishad 1, Anuja Premawardhena 2
1Post Graduate Institute of Medicine, University of Colombo, Sri Lanka
2 Department of Medicine, Faculty of Medicine, University of Kelaniya, Sri lanka
Background Table 2. SF 36 description of the patients.
During last few decades with introduction of regular blood
transfusion and effective iron chelating therapy, life
expectancy of Thalassaemia major patients has improved. SF 36 Components Percentage
Thus new challenges in life events and quality of life have General Health
emerged but still not looked into.
mortality. Studies to identify predictors of severe dengue in I get sick easily 67.60%
adults are sparse. Not healthy as others 70%
Methods My health will not get worse 70%
Prospective quantitative and qualitative study was carried out My health is worse 2.70%
at Ragama and Kurunegala with transfusion dependent
patients of 16 years or older during 2011. Short Form-36 (SF- My health is not excellent 8.80%
36), Becks depression inventory, GHQ-30 (General Health Physical functioning
Questionnaire ) and in-depth interviews were used.
I have limited high active activities 63.70%
Results I have limited moderately active activities 17.60%
Sample consisted of 37 young adult Thalassaemia patients. I have limited mild active activities 20.60%
19(51%) were females. Median age was 20 years.(25 th
percentile 17 years and 75 th percentile 22 years ). 64% had
education level more than Ordinary Level. Role physical
I have reduced time spent for job and others 22.60%
I am not able to do expected work 28.10%
I had to limit their work 18.80%
I found difficult to do their work 38.70%
Role emotional
I think I have reduced time spent for job and
others 31.30%
I think I am not able to do expected work 38.70%
I think I can not able to concentrate 28.10%
Social functioning
Table 1. Some aspects of social expectations of patients I have problems of outing with their friends and 66.70%
relatives
Social Expectations described by Vitality
patients Percentage
Boys Girls I am satisfied with my life 77%
I want to get marry 40% 10.50% Think I am not strong enough 22.50%
I want to have children 33% 5%
I feel a great tiredness 39.40%
I want to do a job 70% 56%
24% were fed-up with life in overall and 5% had mild depression in analysis of Beck depression inventory. Significances for each item in
SF 36, GHQ 30, Becks and other data were calculated for sex and level of education. None were statistically significant.
Conclusion
Thalassaemics want to live a normal life like healthy people. They seem to be mentally more stable than physically
do. We need to look into these aspects in the future.