Report on first international workshop of pediatric management in hemophilia.

Abstract

The first meeting of the Pediatric Advisory Committee, those pediatricians interested in the care of the child with hemophilia, took place in Pomerio, Italy, in November, 1982. The participants were from Holland, France, Denmark, Sweden, United Kingdom, Germany, Spain, Italy and the United States. In the first session the participants discussed the pediatric care in each of their countries and how it interdignitated with the hemophilia care. There was consistency in that all countries had a system of comprehensive care and a home care program within that system. The major topic of discussion was the use of prophylaxis: the criteria for entering patients on a prophylactic program, the protocol for treatment, the evaluation of efficacy of the program and the risks of long term therapy on the physical, immunologic, and the psychological functioning of the patient. It was agreed that an in‐depth prospective study needs to be done to compare the outcome of children on prophylaxis to those on‐demand therapy. The role of the pediatrician in the growth and development and the hematologic care of the children was explored and found to vary widely from country to country both in the Centers and in liaison with the local physicians. There was no consistency in family support or learning of coping skills. Problems in care for the adolescent were universal. Neither the hematologic nor the psychosocial problems specific to this age group are well addressed and the liaison with the internist needs to be expanded to fully service the growth and maturation of the young man. In summary, we believe that the role of the pediatrician as primary care physician and hematologist for the child and the adolescent needs to be expanded to improve the mental and physical development of the patient with hemophilia.