The global need for paediatric palliative care: the evolution of serious health-related suffering in children aged 0-19 years from 1990 to 2023.

Abstract

The majority of children needing palliative care globally reside in low-income and middle-income countries (LMICs) with limited or no access to such care, resulting in an excess burden of suffering. We aimed to estimate the global burden of serious health-related suffering (SHS) among children aged 0-19 years from 1990 to 2023, providing a measurement tool essential to respond to the need for more effective palliative care policies and services for children. We generated refined estimates of palliative care need for children aged 0-19 years for a 30-year time series, spanning 1990 to 2023, by extending and applying the SHS methodology originally introduced by The Lancet Commission on Global Access to Palliative Care and Pain Relief and subsequently updated in 2024. The updated methodology included convening an expert paediatric palliative care panel. First, the panel identified the health conditions specific to children and related parameters for estimation of the total SHS burden in children using epidemiological mortality and prevalence data within the Global Burden of Disease Study 2023 dataset. Second, to estimate the SHS burden among decedents (those who died within the past year) and non-decedents (those who survived but experienced persistent, chronic, or progressive suffering) and quantify the condition-specific palliative care need, for each health condition the panel determined the percentage of deaths or survivors who experienced SHS and thus need palliative care or the ratio of the number of survivors with SHS to the number of deaths. In 2023, about 10·6 million children aged 0-19 years experienced SHS worldwide, with 96% of these children residing in LMICs. The three health conditions accounting for most of the global SHS burden in children were endocrine, metabolic, blood, and immune disorders (51% of SHS in children), premature birth and birth trauma (18%), and injury, poisoning, and external causes (7%). The annual number of children experiencing SHS changed little between 1990 and 2023, but the SHS burden shifted from primarily decedents toward non-decedents, with non-decedents accounting for 59% of the total burden of SHS in children in 1990 to 81% in 2023. Our findings underscore the crucial need to expand access to high-quality palliative care services for children and adolescents, particularly in LMICs. Our results also highlight the shift from decedent to non-decedent care needs associated with the substantial morbidity experienced by those living with their disease. Specific health-system policies to respond to the need for increased and higher-quality paediatric palliative care, especially interventions and medicines essential to address the unique palliative care needs of children, must be adequately funded to effectively reduce the avoidable burden of SHS among children. University of Miami.