A recent global report has shed light on the stark inequities in pediatric palliative care, revealing a dire situation for millions of children worldwide. The study, published in The Lancet Child & Adolescent Health, highlights a critical issue: nearly all of the 10.6 million children suffering from serious health-related suffering (SHS) reside in low- and middle-income countries, where access to specialized palliative care is limited or non-existent. This is a concerning trend, especially considering the majority of these children live in poverty.
The report defines SHS as physical, psychological, social, or spiritual pain and distress linked to life-threatening or life-limiting conditions, as outlined by the Lancet Commission on Global Access to Palliative Care and Pain Relief. The findings indicate a significant shift: most children in need of palliative care are now living longer with severe, chronic illnesses, which necessitates a different type of service and extends the duration of care required. Led by the UCLA Research Hub on Global Access to Palliative Care and Pain Relief, this global collaboration involved authors from various academic institutions and international organizations.
The study's implications are profound. According to the researchers, the unmet need for palliative care in children represents a major global health challenge, as it lacks sufficient resources. The Lancet commission previously estimated that $1 million per year would be adequate to cover pain medications for all children aged 0-14 in low-income countries. However, pediatric palliative care, a crucial equity imperative, remains severely underfunded and overlooked, leaving millions of children and their families vulnerable.
The research team employed an updated, child-specific methodology to estimate SHS, building upon the framework introduced by the Lancet commission. They analyzed data from the Global Burden of Disease Study 2023 and convened an international expert panel in pediatric palliative care to identify health conditions specific to children. The panel's findings revealed that 10.6 million children experienced SHS in 2023, with 96% of them living in low- and middle-income countries. This represents 14% of all individuals suffering from SHS globally.
Over the past 30 years, there has been a notable shift in the causes of SHS in children. In 1990, 59% of children with SHS required palliative care for end-of-life conditions, but by 2023, this figure had risen to 81%. Researchers attribute this change primarily to the reduction in children living with HIV, especially in low- and middle-income countries, along with improvements in broader health systems. The leading causes of SHS were endocrine, metabolic, blood, and immune disorders (EMBID) (51%), premature birth and birth trauma (18%), and injuries (7%).
Looking ahead, the study's findings provide crucial evidence to guide policy development and resource allocation for children's palliative care globally. Researchers emphasize the urgent need for health system strengthening, particularly in low- and middle-income countries where the need is most concentrated. Future work should include more detailed analysis by age subgroups, incorporate patient and family perspectives, and address the long-term effects of COVID-19. It is also essential to continue refining the methodology to reflect the longer duration of palliative care needs in children and the increasing numbers of children in need. The research team recommends integrating palliative care into universal health coverage schemes, ensuring access to essential medicines, including child-appropriate opioid formulations, and expanding competency-based training programs for health professionals at all levels.
Dr. Felicia Marie Knaul, co-lead author and distinguished professor of medicine at UCLA Health's David Geffen School of Medicine, emphasized the urgency of the situation, stating, 'The suffering of children, especially those living in poverty, has been largely invisible in global health policy. Our findings underscore the urgent need to expand access to high-quality pediatric palliative care. As more children live longer with serious illnesses, health systems can and must respond with adequately funded, child-specific policies to reduce the avoidable burden of suffering.'
