Comparative survey of problems in thalassemia major patients with regular and irregular follow ups of therapeutic principles

ABSTRACT

Thalassemia is one of the important chronic hereditary diseases. There are nearly 20000 thalassemia major patients in Iran. Multiple blood transfusion and aggregation of iron load cause numerous complications which can be reduced by regular treatments. This study was conducted to determine and compare the problems of thalassemia major clients in regular and irregular follow ups of therapeutic principles. This study was performed as a cross-sectional study. The sample consisted of all thalassemia major clients over 40 years of age having referred to the center of adult thalassemia in Tehran. 224 clients were divided into regular and irregular groups. A questionnaire was used for data collection. Based on difference between the averages of regular and irregular groups the average rate of psychological problems was 22.7%, sociological problems 18.7%, and economic problems 17.6%. Based on average differences between the two groups, important psychological problems include fatigue due to long periods of treatment [1.5], future hopelessness [1.4], and lack of self confidence [1.2]; sociological problems include community unawareness of the disease [1.3], difficult access to various specialists [1.1], and lack of ongoing training classes [1.0]; finally economic difficulties include access to necessary drugs and equipment [0.93], quality of free equipment [0.92], and family support [0.8]. These are the prominent problems addressed in irregular treatment follow ups. Results have revealed that psychological problems had a more distinct effect relative to social and economic problems on the therapeutic irregular follow ups