Regular transfusions and iron chelation therapy have transformed the life expectancy of homozygous beta-thalassaemia patients, so that it can now be considered a chronic condition. A health questionnaire survey of all adults suffering from beta-thalassaemia major receiving treatment on the Island of Crete, Greece was carried out with the aim of ascertaining the factors that are associated with their attitudes and expectations. The responses of 67 of the 72 patients, aged 18-45 years, were analyzed using Principal Component Analysis to extract three component indicators (Adaptability, Optimism and Pessimism Indicators), which reflected their attitudes towards life and two component indicators (Healing and Therapy Indicators) that reflected their expectations from life. These were then tested against the respondents' socio-demographic characteristics, their health status and satisfaction with the services. It was found that the Optimism Indicator was associated with a positive comparative assessment of health status, while the Adaptability Indicator was associated with a positive subjective assessment of health status. The Adaptability Indicator was also higher in those satisfied with the services but it was lower in the best-educated group. The pessimism indicator was associated with a negative comparative assessment of health status and with the lowest level education. The expectation indicators showed an interaction with gender and other parameters such as admission to hospital. The relationship between the attitudes and the expectations of patients suffering from a chronically disability condition and specific experiences during their treatment regimens raises several issues related to the need for better health education and psychological support of the group of patients, as well as issues related to the communication skills of the staff caring for them.
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http://dx.doi.org/10.1111/j.1471-6712.2004.00267.x | DOI Listing |
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