Illness Perception in Patients with Thalassemia in Nablus, Palestine: A Pilot study

Thalassemia is a hemoglobinopathy which is results from a gene mutation in α or β chain. It has the preeminent prevalence in Mediterranean, tropical areas and regions near the equator. Thalassemia is one of the most prevalent genetic blood disorders in the world. Research pertaining to patient perception of thalassemia is limited in Palestine. Our study is the first one nationwide that aims to assess the perceptions and attitudes toward thalassemia and thalassemia treatment. A cross-sectional, non-interventional, descriptive study design was used. A convenient sample of 113 thalassemic patients attending the specialty clinic at Al-Watani hospital, Nablus, Palestine was included. We used a previously published Brief-Illness Perception Questionnaire (B-IPQ) version to achieve the objectives of the study. A total of 113 thalassemic patients aged 12-70 (average 21.0±9.5 years) were recruited, 51.3% were females, and they have been diagnosed since 19.4± 7.4 years. A bit less than half (44.2%) had college education; the rest had high school or less level. The largest category (55.8%) live in villages, 57.5% of them had a consanguineous marriage, yet almost all (98.2%) of the participants did not have any other diseases. As for the perception aspects, participants believe their disease as chronic, and that the treatment can control their disease to a significant extent (treatment control) (median = 10 for both). As for personal control, it was high with a median of 8, and the same value was also achieved for understanding the disease. The remaining components of the B-IPQ were found to be 3 indicating a low score Data indicated that the participants perceive their disease as chronic with treatment being able to control. They also believe that they have some control over the disease, and that it has minimal effect on their quality of life. More steps should be taken to focus on the psychological aspects of this disease, and more education is needed to prevent its occurrence, especially those related to consanguineous marriage.