Concurrent Palliative Care Remains Underused Among Young Adults With Advanced Cancer Despite Doubling Over 13 Years

A retrospective cohort study published in JAMA Network Open reveals that concurrent palliative care remains substantially underutilized among young adults with advanced cancers, with fewer than one in five patients receiving these guideline-recommended services alongside systemic treatment. The study, spanning diagnoses from 2010 to 2023, found that while utilization has doubled over the 13-year period, the absolute rate remains low at 18.3% in 2023.

"Palliative care can help address symptoms, support decision-making, and improve quality of life during treatment, yet many young adults are still not receiving these services," said lead study author Kewei Sylvia Shi, MPH, Associate Scientist, Health Services Research at the American Cancer SocietyView company profile. "We need to get this population the care they need, especially as rates of early-onset cancers continue to increase."

Study Design and Population

The investigation drew on the National Cancer Database and included 67,706 patients aged 18 to 39 years (median age, 33 years; interquartile range, 28–37) newly diagnosed with their first primary stage IV solid tumor or poor-prognosis high-grade brain tumors (search)Search disease. Women comprised 51.9% of the cohort. Of the total, 62,072 patients had stage IV solid cancers and 5,634 had poor-prognosis high-grade brain tumors.

Researchers excluded patients who survived less than 30 days to allow sufficient time for palliative treatment initiation, as well as those with missing demographic or treating facility information and patients receiving palliative care without cancer-directed therapy. The National Cancer Database defined palliative care as any care to alleviate symptoms, including palliative-intent surgery, radiation therapy, or systemic therapy, as well as pain management and other nonprocedural supportive care.

Key Findings: Persistent Gaps and Stark Disparities

Between 2021 and 2023, just 17.1% of patients received concurrent palliative care. Utilization varied dramatically by cancer type. The highest rates were observed among patients diagnosed with lung cancer (search)Search disease (39.1%; 95% CI = 35.9%–42.4%), gastric cancer (search)Search disease (32.6%; 95% CI = 29.1%–36.2%), kidney cancer (search)Search disease (29.9%; 95% CI = 24.8%–35.6%), female breast cancer (search)Search disease (28.2%; 95% CI = 26.3%–30.2%), and pancreatic cancer (search)Search disease (27.6%; 95% CI = 23.2%–32.4%).

In contrast, palliative care use was lowest among patients with Hodgkin lymphoma (search)Search disease (1.9%; 95% CI = 1.4%–2.7%), non-Hodgkin lymphoma (search)Search disease (4.1%; 95% CI = 3.3%–5.0%), poor-prognosis brain tumors (search)Search disease (4.3%; 95% CI = 3.4%–5.5%), and head and neck cancers (search)Search disease (4.4%; 95% CI = 3.0%–6.4%).

"[These data] suggest that receipt may depend partly on symptom burden, specialty clinician factors, or care setting rather than patients' full supportive care needs," Shi noted.

Clinical Implications and Calls for Policy Action

ASCO guidelines recommend that all patients with advanced cancer (search)Search disease be referred to palliative care, which can be delivered early in the disease course including during active treatment. Yet the study underscores a persistent gap between guidelines and real-world practice.

"Cancer profoundly disrupts the lives of young adults. Beyond its physical effects, it can impact relationships, education, and plans for the future," said Arif Kamal, MD, MBA, MHS, Chief Patient Officer at the American Cancer SocietyView company profile and a palliative medicine specialist. "Palliative care should be integrated into oncology care for all people with cancer, no matter their age. And research has consistently shown that when palliative care and oncology teams work together, we can provide the best possible treatment while making sure it reflects what matters most to each patient."

Lisa Lacasse, President of the American Cancer SocietyView company profile Cancer Action Network, emphasized the policy dimension: "This research highlights the pressing need for policies that will improve access to palliative care services for patients with cancer, especially for young adults, who often face unique challenges over the course of their cancer journey. We are urging Congress to pass the Palliative Care and Hospice Education and Training Act, which would improve patients' access to quality palliative care services while expanding palliative care research funding and training tomorrow's workforce to provide comprehensive care that treats the whole person."

Study Limitations and Future Directions

The researchers acknowledged that evaluating palliative care only during initial treatment could underestimate overall use. Shi emphasized the need for improved data infrastructure: "Palliative care is not consistently or comprehensively captured in many existing cancer registry data sources. We need better and more standardized data on when palliative care is initiated, what services are provided, who delivers them and how frequently patients receive them."

Shi also called for future research to examine palliative care use within specific cancer types and to explore the patient-, clinician-, treatment-, health system-, and policy-level factors that influence whether young adults receive these services. "Improving palliative care measurement and documentation would allow researchers to evaluate the quality and timing of care more accurately and identify strategies to expand access for young adults who may benefit from receipt of palliative care," she added.