El primer año de la �Unidad de Cuidados Paliativos Pediátricos y Patología Crónica Compleja� en Gran Canaria

Abstract

Introduction : in achieved a decrease in mortality and increase in child survival. These patients require comprehensive and coordinated care, with pediatric palliative care (PPC) playing a fundamental role. In recent years its importance has grown exponentially in Spain, which has encouraged the creation of PPC units. We present characteristics of the patients followed by the CHUIMI PPC-PPC Unit during its first year of operation. Material and methods : Epidemiological, observational, descriptive and bidirectional study of patients seen in the CHUIMI UCPP-PCC from November 2019 to January 2021. Results : Total 86 patients, 73 (84.88 ░ %) palliative, 13 (15.12 ░ %) non-palliative, 40 (54.79 ░ %) non-oncological, 33 (45.21 ░ %) oncological. Group-1 ACT (46.6 ░ %), by pathology group predominantly neurological (36 ░ %) and genetic disorders (15.1 ░ %). Main problems: pain (70.9 ░ %), gastrointestinal problems (65.1 ░ %), neurological (64 ░ %). Exitus 21 (24.42 ░ %) of the sample, 90.5 ░ % in hospital. Mean E-PaPas 18 pts, mean QL 64.4 pts oncological 39.2 pts non-oncological. Higher frequency of pain and death in patients with a high need for PPC. The greater the need for PPC and the greater the number of gastrointestinal problems, the lower the QL score. Discussion: This study shows that the problems and symptoms of pediatric palliative patients vary according to whether they are patients with or without oncologic diseases, with pain being a very prevalent symptom in both groups, which is also directly related to the need for PPC. The site of death of pediatric palliative patients depends on the provision of palliative care, with a higher prevalence of death in hospital. Quality of life has an inverse relationship with PPC needs.