bjective: For adolescent thalassaemic patients, parenteral iron-chelation therapy is still a burden and a major reason for unsatisfactory compliance. The introduction of a new pharmaceutical preparation of deferoxamine (Desferal) claimed to be better tolerated was accompanied by an epidemiological study on the quality of care and life of the Italian thalassaemic population and on the acceptability and safety profile of the new preparation compared with the old one. Methods: This was a two-period prospective survey of 867 patients (12% of the registered thalassaemic patient population) in a sample of centres representative of the different contexts of care.Conclusion: While oral chelation therapies are still under evaluation, the overall quality of care and perceived quality of life of a representative sample of the Italian population of thalassaemic patients show that room for improvement depends more on the contexts of life and care than on strictly medical conditions. Comprehensive epidemiological surveillance is needed as a routine component of the care of this highly morbidity-burdened population to ensure timely appreciation of unmet needs and to assess the yield of innovative treatment schedules.
PHARMACOSURVEILLANCE AND QUALITY OF CARE OF THALASSAEMIC PATIENTS: A LARGE SCALE EPIDEMIOLOGICAL SURVEY.
ARBORETTI GIANCRISTOFARO, ROSA;
2001
Abstract
bjective: For adolescent thalassaemic patients, parenteral iron-chelation therapy is still a burden and a major reason for unsatisfactory compliance. The introduction of a new pharmaceutical preparation of deferoxamine (Desferal) claimed to be better tolerated was accompanied by an epidemiological study on the quality of care and life of the Italian thalassaemic population and on the acceptability and safety profile of the new preparation compared with the old one. Methods: This was a two-period prospective survey of 867 patients (12% of the registered thalassaemic patient population) in a sample of centres representative of the different contexts of care.Conclusion: While oral chelation therapies are still under evaluation, the overall quality of care and perceived quality of life of a representative sample of the Italian population of thalassaemic patients show that room for improvement depends more on the contexts of life and care than on strictly medical conditions. Comprehensive epidemiological surveillance is needed as a routine component of the care of this highly morbidity-burdened population to ensure timely appreciation of unmet needs and to assess the yield of innovative treatment schedules.Pubblicazioni consigliate
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