Results of the “Words in Hemophilia: Towards Patient Engagement” study have been published

How can we defend hemophilia patients and encourage then to adhere to therapy? How can we improve clinical practice and doctor-patient relationships with a view to actively involving the individual in their course of treatment? These are the main questions on which the project entitled “Words in Hemophilia: Towards Patient Engagement” focuses, led by the  “EngageMinds HUB” Research Center of the Catholic University of the Sacred Heart of Milan since 2020.

The study, supported by Kedrion over this two-year period with an unconditional grant,  was completed at the end of 2021 resulting in the publication of a document entitled “Health Policy Brief: the pillars of Engagement in Hemophilia”, in which the main results of the study are illustrated, which has led to the definition of some of the key principles intended to improve patient adherence to therapy through positive and effective doctor-patient communication

The project under the leadership and scientific supervision of Prof.ssa Guendalina Graffigna, director of the “EngageMinds HUB”, saw the active participation of the Italian Association of Hemophilia Centers (AICE), the Federation of Hemophilia Societies (Fedemo) and the Paracelso Foundation. 

The study, which draws inspiration from the principles of narrative medicine, has given patients the opportunity to air their personal experiences, combining qualitative and quantitative methodology over the various phases of the study: from gathering stories and narratives of patients having to live with hemophilia related to the experience of the disease and therapy, leading to a qualitative-quantitative investigation carried out on 50 patients and 27 specialists who work in our national Hemophilia Centers,  in order to understand the strong points, expectations, areas for improvement and needs in terms of Patient Engagement.

All the results that emerged during the course of the study have been discussed, integrated and approved by a highly qualified panel made up of hematologists and patients,  who throughout the course of the project also had the opportunity for discussion during a dedicated workshop to foster mutual awareness and to improve communication and relational skills of clinicians

For more information please contact: [email protected]
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