Experience report: Nursing team performance in the Enzyme Replacement Therapy sector at a University Hospital in Paraíba

Abstract

This article aims to report the experience of the nursing team working in the Enzyme Replacement Therapy sector of a university hospital, highlighting the challenges, lessons learned, and results observed over one year of clinical practice. The service provides care to approximately 35 patients with rare diseases. On treatment days, the daily team includes at least one nurse, three nursing assistants/technicians, and one attending physician. We also receive support from two geneticists, a multidisciplinary team (social work, psychology, nutrition, and speech therapy), and other specialists. We perform an average of 100 infusions per month, with an adherence rate of approximately 80%. The objective is to share the clinical practices, challenges, and insights gained throughout one year of nursing care provided to these patients. This experience highlighted the importance of a multidisciplinary approach, the development of a strong bond with families, and treatment adherence as determining factors for therapeutic success and improved quality of life for the patients. It is concluded that nursing practice in this context requires not only technical knowledge but also sensitivity, active listening, and a strong commitment to humanized care.