Comprehensive Care for Hemophilia and Cooperation with Support Group

Abstract

Comprehensive care for hemophilia means support by a healthcare team composed of members of various occupations specializing in hemophilia to enable hemophiliacs and their families to go about their lives both physically, mentally and socially in a manner that suits them. The need for comprehensive care has been pointed out for some time, but it has not yet become established as a universal system in Japan. Carrying out comprehensive care not only reduces bleeding and its sequelae, but contributes to improving the QOL of patients and their families. The organization of a comprehensive care system and setting up of a care liaison system in Japan are urgent tasks. The Hemophilia Committee of the Japanese Society of Pediatric Hematology has set up a pediatric hemophilia care network with the aim of exchanging healthcare information and disseminating healthcare information. We hope to construct the comprehensive care system that conforms to Japanese medical system by exchanging views through the network and cooperation with Japanese Nurse Group for Research of Hemophilia Care. The principal objectives of the Hemophilia Patients' Association are encouragement to enable patients and their families to become informed and to provide psychological support, and it made recommendations to the government to improve medical environment. The role of physicians is to transmit knowledge and information at the request of the patient association and to serve as consultants. It is necessary to provide support to enable the patient association to grow stronger.