96% of children needing palliative care reside in low, middle-income countries: Study

Nearly all the world's 10.6 million children experiencing serious health-related suffering (SHS) live in low and middle-income countries with little to no access to palliative care, specialized care for their illness, according to a comprehensive new report from a global team led by UCLA researchers, and published in The Lancet Child & Adolescent Health.

The study defines SHS as physical, psychological, social or spiritual pain and distress linked to life-threatening or life-limiting conditions, as introduced by the Lancet Commission on Global Access to Palliative Care and Pain Relief. The findings reveal a dramatic shift: most children in need of palliative care now live longer with severe, chronic illness, fundamentally changing the type of services needed and extending the duration of these services. Led by the UCLA Research Hub on Global Access to Palliative Care and Pain Relief, the study reflects a global collaboration among authors from various academic institutions and international organizations.

Why it matters

According to the researchers, children's unmet palliative care needs represent a significant global health challenge, lacking sufficient resources. The Lancet commission previously estimated that $1 million per year would be sufficient to cover pain medications for all children ages 0-14 years in need who live in low-income countries. Yet pediatric palliative care, an equity imperative that ensures access to palliative services for every child experiencing SLS, remains severely underfunded and overlooked. This leaves millions of children and their families, the majority of whom are living in poverty, very vulnerable.

What the study did

The study applied an updated and child-specific methodology for estimating SHS, building on the framework introduced by The Lancet commission. Researchers analyzed data from the Global Burden of Disease Study 2023 and convened an international expert panel in paediatric palliative care to identify health conditions that are symptom burden specific to children. The panel used this to estimate the number of children experiencing SHS. The team analyzed 21 health conditions across all income levels, age groups and regions, producing the most comprehensive global assessment to date of children's palliative care needs.

What they found

• The study found that 10.6 million children experienced serious health-related suffering in 2023, representing 14% of all individuals experiencing such suffering globally. A striking 96%, or nearly 10.2 million, of these children live in low and middle-income countries.
• The research revealed a major shift over 30 years: in 1990, 59% of children with SHS and in need of palliative care were living with chronic conditions rather than facing end of life, but by 2023, this rose to 81%. Researchers attribute this shift primarily to the reduction in children living with HIV, particularly in low and middle-income countries, along with broader health-system improvements.
• The three leading causes of SHS were endocrine, metabolic, blood and immune disorders (EMBID) (51%), premature birth and birth trauma (18%), and injuries (7%). Across all income groups, EMBID and premature birth and birth trauma were leading causes. The third leading cause varied by income level: HIV in low-income countries; congenital malformations in lower-middle-income countries; leukaemia in upper-middle-income countries; and injury, poisoning and other external causes in high-income countries.
• From 1990 to 2023, low-income countries saw a 34% increase in children needing palliative care, while high-income countries experienced a 36% decrease.

What's next

The findings provide critical 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 needs are 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 will also be important to continue to refine the methodology to reflect longer duration of palliative care needs in children, and hence, 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.

From the experts

"The suffering of children, especially those living in poverty, has been largely invisible in global health policy," said co-lead author Dr. Felicia Marie Knaul, distinguished professor of medicine at UCLA Health's David Geffen School of Medicine. "Our findings underscore the urgent need to expand access to high-quality paediatric palliative care. As more children live longer with serious illness, health systems can and must respond with adequately funded, child-specific policies to reduce the avoidable burden of suffering."

The study was funded by the University of Miami. Lead author Dr. Felicia Marie Knaul reports research grants from various sources, including the University of Cambridge (funder Breast Cancer Now), UK Medical Research Council, and EMD Serono, as well as gift funding from the ABC Global Alliance. She serves as founding president of Tómatelo a Pecho and as a senior economist at the Mexican Health Foundation. Other authors report various consulting fees, research grants and advisory board positions as detailed in the published paper. Complete disclosures are available in the original publication.