Pediatric palliative care: data of the first 13 months of operation

Abstract

Aim: Children with complex chronic conditions are main candidates for pediatric palliative care (PPC). Despite the proven advantages of palliative care for these children, the literature lacks on the adequate description of the pediatric population receiving this care. The aim of this study was to describe demographic characteristics of the patients, to examine the patient survival and the factors affecting patient survival. To our knowledge, this is the first description of the cohort of children and adolescents on PPC in Turkey. Materials and methods: This retrospective chart review study examined patients receiving palliative care at University of Health Sciences, Dr. Sami Ulus Maternity and Children's Training and Research Hospital between 2.12.2019 and 31.12.2020. The data of demographics, underlying diagnosis, medical technology dependence, symptoms at admission, number of hospitalizations, number of emergency department (ED) admissions were collected. Results: 70 male and 66 female patients were admitted 259 times during the observation period. The median length of hospital stay was 7 days. Median age at referral was 44 months (range:2.7-215). Fifty-one patients (37.5%) were younger than 2 years of age. Neurological diseases were the most prevalent disease group. 56 of our patients (41%) had a tracheostomy. 82 patients (60.3%) needed respiratory support. Fifty of them were ventilated through home-type mechanical ventilator. Only 28 patients (20.6%) could be fed through oral route. Nasogastric tube (n=84, 61.8%) was the main device used by children who needed nutritional support. 52% of patients were referred from ED. Most prevalent symptoms of the patients at admission were dyspnea and tachypnea. 151 of the patients (58.3%) were diagnosed with infection, the most common infection was lower respiratory tract infection (n=103, 39.8%). Of 259 PPC center admissions 224 (86.5%) were discharged to home. Twenty-seven children (20%) died during study period. Nineteen of deceased patients died in intensive care unit (70%). The 1-year survival rate of the patients was 78.1%. In logistic regression analysis the risk of death was 3.4 times higher in patients ≤2 years of age (CI: 1.4-8.8, p=0.01) and in patients with respiratory support (CI: 1.1-11.0, p=0.04). Conclusion: Describing the cohort of patients on PPC provides important information on the complexity of their disease process, types of their illnesses, medical technology dependence, re-admission rates, mortality status and factors affecting mortality. Important research has been done but pediatric palliative care is still in infancy in Turkey. Future prospective research is needed to understand the unique challenges of PPC.

Keywords

• End of Life
• Medical Devices
• Multiple Chronic Health Conditions
• Survival

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