Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries

Abstract

BACKGROUND: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low-income and middle-income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open-ended responses. RESULTS: A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%-96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P < .001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance. CONCLUSIONS: The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region. Cancer 2020;126:4984-4993.

Physician Perceptions of Palliative Care for Children With Cancer in Latin America

“… 15 , 16 , 17 Most research into physician perceptions of PPC has been conducted in high-income countries, but some recent studies have included low- and middle- income countries. 18 , 19 , 20 However, the perceptions of PPC among physicians who care for children with cancer in Latin America are still unknown.…”

“…The survey was initially distributed to physicians in 11 countries in Eastern Europe and Central Asia. 18 , 19 The objective of this study was to distribute the ADAPT survey to assess physicians’ perceptions of PPC and their comfort with delivering primary palliative care in 17 countries in Central and South America.…”

Mapping Pediatric Oncology Clinical Trial Collaborative Groups on the Global Stage

“…127 Eurasian Alliance in Pediatric Oncology published a recent study on the integration of palliative care into pediatric oncology and has also developed coursework for the training of pediatric oncology nurses. 127,128…”

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

“…The ADAPT study had 424 participants from 11 countries: Azerbaijan, Armenia, Belarus, Kazakhstan, Moldova, Mongolia, Russia, Tajikistan, Ukraine, and Uzbekistan (Fig 1 ). 17 , 18 Country reports were designed to highlight primary findings of the ADAPT study and provide background information on the benefits of pediatric palliative care on the basis of WHO guide published in 2018. 19 EurADO collaborators identified local Ministry of Health, Ministry of Education, hospital leaders, and fellow physicians as the target audience for the advocacy tool, which further informed report development.…”

“…15 , 16 Therefore, the Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) study was conducted in 2019 in 11 participating EurADO countries, revealing delayed integration of palliative care into pediatric oncology practice, low access to home-based and in-patient services, misalignment of physician knowledge with WHO guidance, low physician self-assessment of clinical competence, and high levels of burnout. 17 , 18 Participating countries in ADAPT, representing Eastern Europe and Central Asia, although geographically and culturally distinct, share a common history and are all Russian-speaking, with the exception of Mongolia. All EurADO countries participated in the study at the time of its inception, and the study surveyed any physicians treating children with cancer within each country.…”