A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelines

Abstract

BACKGROUND: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses. RESULTS: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care. CONCLUSIONS: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context.

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

“…Yet while physicians reported a desire for earlier palliative care integration, they continued to describe the ideal timing for palliative care involvement as occurring later in the course of illness (ie, at times of high symptom burden or the exhaustion of treatment options) than recommended by WHO guidelines (ie, at the time of diagnosis of an illness with an anticipated poor prognosis) 2 . In part influenced by physician uncertainty of patient prognosis, this gap further demonstrates an incomplete understanding of international recommendations for palliative care integration, consistent with previous ADAPT findings that identified a malalignment of physician knowledge with WHO guidelines 18 …”

“…The majority of respondents were physicians who practice pediatric hematology and/or oncology (67%) and who lack palliative care training (81%) (see Table 1 for complete demographic information). 18 Although approximately one-half of the respondents (46%) reported no access to a pediatric palliative care consultation in their practice setting, access to consultation varied by country, ranging from 18% to 96% ( Fig. 1).…”

“…26 Moreover, limited physician knowledge and late referral practice patterns are consistent with findings from the ADAPT study which identified the conflation of palliative and end-of-life care among phyicians. 18 Respondent descriptions of physician ambition and stigma of failure…”

“…Methodology for the design and distribution of the ADAPT survey has been described previously. 18 Briefly, survey development was predicated on WHO guidelines, a review of the published literature, and synthesis of major findings assessing physician-perceived barriers to the integration of palliative care in LMICs. 2,9,13 The survey underwent iterative rounds of revisions for content and construct validity and cultural relevance.…”

“…These countries are ethnically and culturally distinct, yet many share a common history, spoken language, and a unique centralized medical system tightly regulated by the government. The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey represents the first systematic evaluation of physician knowledge and attitudes toward palliative care in childhood cancer 18 . In this study, we have presented findings regarding physician assessments of timing and associated barriers to palliative care integration for children with cancer in Eurasia.…”