PURPOSE: The aim of this study has been to evaluate the physical, psychological, and social well-being in a large group of Sardinian adult patients with transfusion-dependent beta-Thalassemia when compared with a group of healthy subjects of the same age and geographical extraction. METHODS: Male or female patients ≥ 18 years of age with Thalassemia major on regular transfusion at Thalassemia Center in Cagliari (Italy) were requested to complete the World Health Organization Quality of life-BREF (WHOQOL-BREF) questionnaire. The WHOQOL-BREF was also made available online to age- and sex-matched non-thalassemic adult subjects living in Sardinia. RESULTS: Two hundred and seven subjects with Thalassemia were invited to participate in the study. The questionnaire was also completed by 211 age- and sex-matched non-thalassemic subjects living in Sardinia. Scores suggestive of a good quality of life were obtained in all the areas investigated. Thalassemia patients had scores at least as good as those of non-thalassemic subjects in all items and the percentage of those with a score ≥ 60 was higher among patients. The analysis of demographic actually highlights that the disease has a little effect on their personal and social lives. There was a positive association between subjective well-being and effective clinical conditions. Moreover, the association between health perception and adherence to treatment suggests that compliance with treatment contributes to the well-being of the patient, both physically and psychologically. CONCLUSIONS: Adult subjects with Thalassemia who live in Western countries have a good quality of life in accordance with the advances in the management of the disease.
PURPOSE: The aim of this study has been to evaluate the physical, psychological, and social well-being in a large group of Sardinian adult patients with transfusion-dependent beta-Thalassemia when compared with a group of healthy subjects of the same age and geographical extraction. METHODS: Male or female patients ≥ 18 years of age with Thalassemia major on regular transfusion at Thalassemia Center in Cagliari (Italy) were requested to complete the World Health Organization Quality of life-BREF (WHOQOL-BREF) questionnaire. The WHOQOL-BREF was also made available online to age- and sex-matched non-thalassemic adult subjects living in Sardinia. RESULTS: Two hundred and seven subjects with Thalassemia were invited to participate in the study. The questionnaire was also completed by 211 age- and sex-matched non-thalassemic subjects living in Sardinia. Scores suggestive of a good quality of life were obtained in all the areas investigated. Thalassemiapatients had scores at least as good as those of non-thalassemic subjects in all items and the percentage of those with a score ≥ 60 was higher among patients. The analysis of demographic actually highlights that the disease has a little effect on their personal and social lives. There was a positive association between subjective well-being and effective clinical conditions. Moreover, the association between health perception and adherence to treatment suggests that compliance with treatment contributes to the well-being of the patient, both physically and psychologically. CONCLUSIONS: Adult subjects with Thalassemia who live in Western countries have a good quality of life in accordance with the advances in the management of the disease.
Entities:
Keywords:
General health; Physical health; Psychological health; Quality of life; Thalassemia major; WHOQOL-BREF
Authors: Paul Telfer; Pietro G Coen; Soteroula Christou; Michael Hadjigavriel; Anita Kolnakou; Evangelia Pangalou; Nicos Pavlides; Michael Psiloines; Krikor Simamonian; Georghios Skordos; Maria Sitarou; Michael Angastiniotis Journal: Haematologica Date: 2006-09 Impact factor: 9.941
Authors: Caterina Borgna-Pignatti; Simone Rugolotto; Piero De Stefano; Huaqing Zhao; Maria Domenica Cappellini; Giovanni Carlo Del Vecchio; Maria Antonietta Romeo; Gian Luca Forni; Maria Rita Gamberini; Roberta Ghilardi; Antonio Piga; Avital Cnaan Journal: Haematologica Date: 2004-10 Impact factor: 9.941