Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
adolescent; article; Belgium; cardiovascular disease; child; chronic disease; complex chronic condition; congenital disorder; data base; female; gastrointestinal disease; genetic disorder; groups by age; health care access; hematologic disease; hospital; hospital admission; hospitalized adolescent; hospitalized child; human; Icd-9; immune deficiency; infant; length of stay; major clinical study; male; malignant neoplasm; metabolic disorder; morbidity; neurologic disease; newborn; palliative therapy; patient care; patient referral; pediatric patient; pediatric ward; priority journal; respiratory tract disease; retrospective study; urinary tract disease
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
Friedel M; Gilson A; Bouckenaere D; Brichard B; Fonteyne C; Wojcik T; De Clercq E; Guillet A; Mahboub A; Lahaye M; Aujoulat I
BMJ Paediatrics Open
2019
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<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</a>
Aggressiveness of care at the end of life in children with cancer: A nationwide cohort study
quality of life; Cause of Death; Child; Prevalence; Cohort Studies; Palliative Care; Aggression; cancer staging; major clinical study; cohort analysis; Quality of Life; Only Child; school child; developmental stage; Portugal; Icd-9; multicenter study; human; child; female; male; hospitalization; palliative therapy; resuscitation; morbidity; prevalence; intensive care unit; total parenteral nutrition; aggressiveness; immunotherapy; vascular access
Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how many children dying from cancer experience aggressive care near the end of life (ACCEoL) in such settings (the most common worldwide). Our study aims to determine time trends in the prevalence of ACCEoL in this population. Methods: Cohort study of children (0-17yo)who died with ICD-9-CMdiagnosis of cancer in public hospitals in mainland Portugal (Jan'10 toDec'15), identified fromthe Hospital Morbidity database. Based on previous studies and clinical experience, measures of ACCEoL comprised: in last 14 days of life: a) intravenous chemo/immunotherapy; in last 30 days of life: b)>14 days spent in hospital, c)>1 hospitalization, d) intensive care unit (ICU) admission, e) advanced life support (e.g. cardiopulmonary resuscitation), f) insertion of devices (e.g. central vascular access, CVA), g) total parenteral nutrition (TPN).We calculated prevalences and tested for time trends using chi2 for trend. Results: The study included 300 patients (median age 9 yo, IQR 4-14, 58.7%male). The prevalence of ACCEoL was stable over time, with 87.8%of the children experiencing at least one ACCEoLmeasure (85.2%in 2010, 88.4%in 2015; p=0.816)). Themost prevalent individual ACCEoL measures were>14 days spent in hospital (51.0%) and>1 hospitalization (43.3%). Most measures showed no statistically significant time trend. Conclusions: In a setting in early stages of pediatric palliative care development, we found that eight in ten children dying from cancer experience ACcEoL in their last month of life. This estimate is higher than those found in countries in more advanced developmental stages and may indicate a need to increase paediatric palliative care availability. The findings also prompt healthcare professionals to reflect on their current practice, balancing treatments and hospitalisations with patients' quality of life in the days they have to live.
Cardoso A; Martins BD; Lacerda A; Gomes B; Lopes S
Annals of Oncology
2017
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