Health professionals, patients and professionals of the Health Administration in the presentation of the program.
Sobi, an international biotechnology company dedicated to the development of innovative treatments for people living with rare pathologies, together with health professionals, patients and professionals from the Health Administration, have gathered this Monday to present the ‘Program for Comprehensive Attention to Hemophilia Patient‘.
The program, embodied in a document prepared by 23 recognized experts multidisciplinary, such as clinicians, health managers, health economists, pharmacists, patients or nursing, also has the endorsement of the Spanish Society of Thrombosis and Haemostasis (SETH), the Spanish Society of Rehabilitation and Physical Medicine (Sermef), of the Spanish Federation of Hemophilia (Fedhemo) and the Royal Victoria Eugenia Foundation (RFVE).
Provide a solution to the new needs of patients
According to the experts of the program, the treatment of hemophilia has evolved in a very important way in the last decades, which has allowed a major improvement in the quality of life of these patients. And they detail in the program, “this fact is accompanied by an evolution in the profile of the patient with hemophilia, with the consequent appearance of new challenges in their care and follow-up, mainly as a consequence of aging.”
“The appearance of a new patient profile with new needs, which continue to require multidisciplinary care; as well as the availability of new treatments capable of normalizing the lives of patients with hemophilia; they have been some of the main reasons for approaching this work “, second Beatriz Perales, director of Market Access, Institutional Relations and Communication of Sobi Iberia, promoters of the initiative.
The initiative aims to establish recommendations for the entire National Health System (SNS) that allow maximizing the quality of life and health outcomes of patients with hemophilia through a multidisciplinary care, coordinated, effective and efficient.
Thus, the objectives of the program include addressing the current challenges of caring for patients with hemophilia from a multidisciplinary perspective; define the optimal standard of comprehensive care for these patients to offer a adequate healthcare their needs, deepening equity and contributing to the reduction of clinical variability in the entire National Health System; and disseminate knowledge about the needs of patients with hemophilia to promote a better approach to associated morbidity.
Fluid relationship between specialists
As agreed by the experts of the program, the comprehensive care team must be made up of the hematologist and the hematology nurse, with specific training in the care of patients with coagulopathies, the specialist in Traumatology, Rehabilitation, Psychology, physiotherapist, internist, hospital pharmacist, as well as having established channels of coordination and fluid relationship with other specialties that can intervene in specific moments of the care process. The importance of patient training is also highlighted, and the need to take into account the relevance that, throughout the patient’s life, should be given to the clinical information that is offered to him.
“In a very summarized way, we could say that the main need of patients with hemophilia is the agile access to a multidisciplinary team that is capable of providing the necessary tools to manage their illness, both from a clinical and emotional point of view, “says Pablo de Mora, CEO of Sobi Iberia.
“Therefore, within Sobi’s commitment, we hope that the conclusions reached with this document will serve as a guide for the implementation of a comprehensive care model for hemophilia, which results efficient throughout the health system and improve the quality of life of patients, “he adds.
Decalogue of Recommendations and proposal of indicators
The group of experts that has participated in the definition of the ‘Comprehensive Care Program for Patients with Healthcare Hemophilia‘has proposed throughout the project up to 33 Likes to contribute to the optimization and improvement of the hemophilia care process. To facilitate access to them, they have been consolidated in the Decalogue of recommendations of the Comprehensive Care Program for patients with hemophilia to improve their care, follow-up and treatment in the SNS.
Finally, Beatriz Perales points out, “in order to be able to measure their results, a series of measurable indicators have been defined, linked to the main identified action objectives, which are address follow-up to patients with hemophilia, attending to the new needs of patients and to their comprehensive and multidisciplinary care throughout the SNS as a whole; generate knowledge about hemophilia and the main unmet needs of patients and improve the patient’s experience, their satisfaction with the health system and their perceived quality of life “.
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