The Lancet Group shared a post on LinkedIn:
“Palliative care for children: underestimated and overlooked
According to a new study published in The Lancet Child and Adolescent Health, 10.6 million children aged 0 to 19 were living and dying with serious health-related suffering (SHS) in 2023—96% in low- and middle-income countries.
‘Our findings draw much-needed attention to the magnitude of SHS and opportunities to strengthen palliative care for this vulnerable population’, says co-first author, Felicia Knaul.
Previous estimates of the global total of children requiring palliative care have varied widely, from 1.2 million to 21 million. Refining methodology originally applied in the 2018 Lancet Commission on palliative care and pain relief, and incorporating mortality and prevalence data from the Global Burden of Disease Study 2023, the study authors generated estimates of SHS among children from 1990 to 2023.
‘To our knowledge, this is the first study to rigorously analyse children’s SHS, based on the Lancet Commission methodology, using child-specific criteria over time.’ – Julia Downing, co-first author
SHS refers to ‘pain, distress, and suffering that may be physical, psychological, social, and spiritual, linked to life-threatening or life-limiting conditions, including end-of-life situations, that require medical intervention and can be alleviated through palliative care.’ In simpler terms, SHS can be understood as a proxy for palliative care need.
The study results suggest a high concentration of SHS burden in 2023 among non-decedent children (children who survived beyond the year), at 81% compared to 59% in 1990. The largest group of conditions causing SHS in 2023 was endocrine, metabolic, blood, and immune disorders, accounting for 51% of SHS. Insights are provided across 21 health conditions (below).
While global commitments have been made to improve palliative care, the annual number of children experiencing SHS—and more poignantly of those who lack access to palliative care—has changed little from 1990 to 2023. This unmet need ‘epitomises the worst failings of global health, particularly because it is neither costly nor complicated to address’, write the study authors.
To improve palliative care for children, several elements are necessary—empowered communities; robust policies for palliative care, research, education, and training; access to medicines; and the integration of services within existing health systems. The authors also highlight a ‘pervasive misconception that children do not experience pain to the same extent as adults’.
‘Paediatric palliative care has been perilously ignored in research, even in the most comprehensive overviews of child and adolescent health…’
Given challenges in data availability, access, and inclusion, the global burden of SHS among children may be even greater than reported. However, this study fills an important evidence gap. The authors hope their findings will spur advocacy for increased investment in palliative care for children globally, particularly where the need is greatest.
In an appraisal of the study’s contribution to the field, Michelle Meiring and Lorna Fraser add that, ‘As complicated as the numbers and methodologies might be, one child suffering needlessly is one child too many.’ ”
Title: The global need for paediatric palliative care: the evolution of serious health-related suffering in children aged 0–19 years from 1990 to 2023
Authors: Julia Downing, Felicia Knaul, Xiaoxiao Jiang Kwete, Héctor Arreola-Ornelas, Nickhill Bhakta, William Rosa, Lukas Radbruch, Julia Ambler, Stephen Connor, Jinfeng Ding, Megan Doherty, Rui Gong, Richard Hain, Rut Kiman, Eric Krakauer, Michael McNeil, Oscar Méndez-Carniado, Marina Morais, Mary Ann Muckaden, Tania Pastrana, Marianne Phillips, Hongliang Tao, Michael Touchton, Valentina Vargas Enciso, Paul Vila, Afsan Bhadelia
Read the Full Article.
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