Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia

Abstract

Purpose: The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders.

Methods: The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian.

Results: Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%).

Conclusion: We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.

FIG 1

Map of Eurasian countries participating in ADAPT. The map displays the 11 countries that participated in the ADAPT study conducted in 2019. Accordingly, ADAPT country-level reports were created for all participating countries. ADAPT, Assessing Doctors' Attitudes on Palliative Treatment; EurADO, Eurasian Alliance in Pediatric Oncology.

FIG 2

The Eurasia pediatric palliative care report. The figure displays a sample report generated on the basis of the collective data from all 11 participating countries in the Eurasia region. Individual country reports are publicly available through the St Jude platform. ADAPT, Assessing Doctors' Attitudes on Palliative Treatment.