TR A I N I N G A N D A DVO CA CY
Compliance to iron-chelation therapy in thalassemic patients The objective of this study was to investigate the biopsycosocial issues related to adherence of iron-chelator therapy in poli-transfused thalassemia patients in order to plan actions to promote the development of the “culture of compliance”. The project was divided into two stages. In the first one, a qualitative survey to understand the psycosocial dimension of both the disease and the treatment was performed on a small number of patients (youth and adults). In the second one, the compliance to the iron-chelator therapy with respect to the biopsycosocial issues was evaluated in a quantitative manner: a greater number of patients was surveyed via questionnaires aimed at verifying the impact of the biopsycosocial issues highlighted by the first-stage analysis. In the first stage 29 subjects in the age range of 18-47 years were involved, participating into 4 focus groups. In the second stage 19 clinical centers were involved and 311 questionnaires were collected. Respondents’ age ranged from 18 to 64 years. The work carried out showed that there are several medical and psyco-social factors that impact on the adherence of iron-chelator therapy in poli-transfused thalassemia patients. Disseminating the results of this work to the scientific community to allow a critical analysis of the most relevant problem experienced by patients has been, without doubts, the first step toward the adoption of targeted strategies to boost the adherence to therapy and improve, at the same time, the quality of life of the patients. Project Coordinator: Consorzio per Valutazioni Biologiche e Farmacologiche Funded by: Chiesi Farmaceutici Duration: 2004 – 2005