Complex Chronic Disease in Pediatrics – Needs in The Last Year of Life

Abstract Published data on hospital use in the last year of life of a child with a life-threatening complex chronic disease (CCD) is scarce yet critical to inform the implementation phase of paediatric palliative care (PPC). We aimed to describe the last year of life of children with CCD, in terms of the clinic characteristics, hospital resources and the impact of referral to a hospital-based PPC team (PPCT). This is a quantitative, retrospective and comparative study of children with CCD (1–18 years of age), who died in a tertiary hospital between January 2016 and December 2020. We analysed the hospital resources in the last year, therapy and procedures in the last week of life, decision to limit treatment (DLT), place of death, referral to the PPCT and place to death, compared by number of CCDs. 72 patients (60% male) with a median age of 10.1 years were included. Most had ≥ 2 CCDs (58%) with cancer as the most common diagnosis (47%). The group with ≥ 3 CCD had longer hospital stays (p = 0.041). Of the 17 patients referred to the PPCT, there was a higher number of DLT (p < 0.001), greater use of the subcutaneous route (p < 0.001), a lower number of transfusions of blood products (p = 0.002) and a lower number of deaths in the Intensive Care Unit - ICU (p < 0.001). The ICU was the place where the highest number of deaths occurred (64% non-referred vs 6% referred, p < 0.001).Conclusion: Early implementation of PPC optimises the use of hospital resources, minimises invasive procedures and therapies and develops effective and sustainable alternatives which are better suited to the needs of children and/or families.