Barriers to Early Integration of Palliative Care in Pediatric Oncology in 11 Eurasian Countries

Abstract

Background:

Early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay palliative care integration into cancer care, particularly in low- and middle-income countries. To date, little is known on the timing of and barriers to palliative care integration in Eurasia.

Methods:

The “Assessing Doctors’ Attitudes on Palliative Treatment” (ADAPT) survey evaluates physician perceptions on palliative care integration in pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context, iteratively reviewed by U.S. 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:

We received 424 physician responses 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 initial palliative care consultation typically occurs when curative options are no longer available. Providers desired earlier initial palliative care consultation than occurs in their setting (p<0.001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance.

Conclusion:

This is the first study identifying physician perceptions of delayed timing of palliative care integration into childhood cancer care in Eurasia and associated barriers. These findings will inform development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region.

Condensed Abstract:

This is the first study to identify physician perceptions of delayed timing of palliative care integration into childhood cancer care in Eurasia. Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance.

Background

According to the World Health Organization (WHO), early integration of palliative care is critical to improve the quality of life of children with cancer.^1,2 Palliative care services and infrastructure are integral components of local health systems to ensure timely referral and access to quality care for all children.² As such, the WHO Global Initiative for Childhood Cancer identifies palliative care as a “core component of comprehensive care starting when illness is diagnosed” to ensure the delivery of best cancer practices and relief of child suffering globally.³

Low- and middle-income countries (LMICs) incur the disproportionate global burden of childhood cancer incidence and mortality, resulting in a higher demand for palliative care. However, access to palliative care services and institutional- and national-scale support is inversely related to national income level.^4–6 Compared to higher-income countries, resource-limited settings have less adequate pain control reported by physicians, less patient and family access to emotional and bereavement support, and less interdisciplinary communication.⁶ Despite these limitations, the implementation of high-quality palliative care has been shown to be feasible in these settings, presenting a cost-effective strategy to mitigate symptoms and decrease invasive interventions at the end of life.^7,8

However, financial, socioeconomic, and cultural barriers continue to delay integration of palliative care for children with cancer. To date, most literature has focused on barriers in high-income countries, centering around parent refusal and unrealistic expectations for cure, as well as physician education and attitudes, emotional labor, and prognostic uncertainty.^9–12 Provider fears or misperceptions often result in late integration of palliative care after curative options are no longer available.^7,13 However, LMICs face an additional set of challenges to palliative care integration in disease-directed treatment, encompassing structural barriers such as limited financial resources, health system infrastructure and capacity, and medical education for specialists and general providers.^14–17

Over a decade earlier, Lynch et. al. identified significant barriers that impede palliative care delivery in Eurasia, a region represented by Eastern European and Central Asian countries, such as limited financial support, opioid availability, public awareness, and training programs.¹⁶ Within the context of oncology practice, however, barriers to pediatric palliative care integration have been understudied in this region. Countries in Eurasia have a wide range of resources, access to palliative care services, and childhood cancer outcomes.^4,5 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 paper, we present findings regarding physician assessments of timing and associated barriers to palliative care integration for children with cancer in Eurasia.

Methods

Instrument Design

The ADAPT survey was developed to assess physician attitudes and knowledge of palliative care, perspectives on timing of palliative care consultation, and barriers to palliative care integration in cancer care in the Eurasian region.¹⁸ The study was developed by pediatric oncology and palliative experts at St. Jude Children’s Research Hospital and collaborating institutions in the Eurasia to target physicians of all specialties who care for children with cancer. The survey tool primarily consists of quantitative items including Likert scale and multiple-choice questions, in synergy with embedded open-ended items to enrich data interpretation (see Supplemental Figure 1 for relevant ADAPT survey items). The ADAPT study received a priori approval from the St. Jude Institutional Review Board. The survey was exempt from further ethical review in participating countries as this anonymous survey collected no participant identifying information.

Methodology for the design and distribution of the ADAPT survey has been previously described.¹⁸ Briefly, survey development was predicated on WHO guidelines, a review of 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. Survey items were serially tested by two panels of U.S. and Eurasian palliative care experts, translated into Russian and Mongolian by bilingual native speakers, and pilot tested in all languages by physicians representative of provider specialties in the target survey population. Following each pilot, feedback was incorporated to further optimize item content, clarity, and linguistic face validity. Surveys were back-translated and reviewed to ensure item construct consistency.¹⁹

Target Sample and Distribution Strategy

Physicians treating children with cancer received the ADAPT survey across 11 participating countries: Armenia, Azerbaijan, Belarus, Kazakhstan, Kyrgyzstan, Moldova, Mongolia, Russia, Tajikistan, Ukraine, and Uzbekistan. With the exception of Mongolia, all countries are Russian-speaking. A unique distribution strategy was developed for each country to maximally circulate the survey to eligible participants in collaboration with local study leaders based on the availability of formal contact lists and listservs (Supplemental Table 1). Accordingly, the ADAPT survey was distributed in English, Russian, and Mongolian.

The survey was primarily distributed via the electronic platform Qualtrics²⁰; alternatively, sites with limited technology or internet access received a paper-based option. Both electronic and paper surveys were completed anonymously, and all surveys were collected in March-June 2019. Paper surveys were manually entered into Qualtrics by local study leaders to standardize data collection and ensure accuracy of analysis.

Statistical Analysis

Descriptive statistics summarized cumulative regional and country-specific demographic data. The association between respondent demographics and physician perceptions were assessed with the Pearson chi-squared test or Fisher’s exact test. For secondary analyses, numeric value was assigned to time points in the disease trajectory in chronological order and 5-point Likert scales evaluating significance of barriers. McNemar’s test and paired sample t-test assessed consistency among physician responses regarding typical versus ideal timing of palliative care. Multivariate analysis of variance (MANOVA) determined if perceived barriers vary by country and Analysis of variance (ANOVA) and assessed differences among these barriers across countries. Hierarchical clustering using Euclidean distance and unweighted average linkage clustering was utilized to order countries appropriately in the heat map. Statistical methods assumed a two-sided significance level of p<0.05. All analyses were performed using SAS software version 9.4 and the heat map was generated in R software version 3.6.2.

Qualitative Analysis

The survey included three prompts for respondents to describe additional barriers and reasons for delayed integration of palliative care in pediatric oncology. Free-text responses were translated by bilingual native speakers to English from Russian (BE) and Mongolian (TB).

An analytic team (BE, AA, DG, EK, GF) identified and consolidated common themes to create a preliminary codebook based on a mixed inductive and deductive approach.²¹ Codes and definitions were revised until consensus was reached. Each written response was treated as a segment for analysis. Subsequently, two authors (BE, GF) test coded set groups of segments (10–15) in response to each free-text prompt, and feedback was incorporated to refine and finalize code definitions (see Supplemental Table 2).

All segments were double-coded (BE,GF), and fluent members of the analytic team (BE, AA) referred to Russian responses to provide further clarification as needed. This method achieved a kappa of 0.83 demonstrating inter-rater reliability. A third reviewer (AA) assisted in resolving code disagreements. All data analysis was performed using MAXQDA software.

Results

We received 424 survey responses from physicians in 11 Eurasian countries with a median country response rate of 60% (range: 15–94%, Supplemental Table 1). Russia and Ukraine experienced lower response rates due to available listserv distribution and large pediatric oncology workforce. Surveys were predominantly completed via Qualtrics (n=386, 91%), with a minority of participants (9%) completing paper versions. A total of 231 (54%) respondents answered at least one of the three free-text survey questions (ranging from 15–48% response rate by question).

The majority of respondents were physicians who practice pediatric hematology/oncology (67%) and who lack palliative care training (81%) (see Table 1 for complete demographic information). While approximately half of respondents (46%) reported no access to a pediatric palliative care consultation in their setting of practice, access to consultation varied by country, ranging from 18% to 96% (see Figure 1). Of those who reported availability of palliative care consultation, respondents typically indicated access to a physician (92%), with more limited access to other members of the multidisciplinary team such as psychologists (27%), social workers (16%), or nurses (13%).

Table 1.

Respondent Demographic Characteristics

Demographics	Overall Sample n=424 n (%)
Country
Armenia	16 (4 %)
Azerbaijan	17 (4 %)
Belarus	23 (5 %)
Kazakhstan	53 (13 %)
Kyrgyzstan	16 (4 %)
Moldova	21 (5 %)
Mongolia	25 (6 %)
Russia	186 (44 %)
Tajikistan	16 (4 %)
Ukraine	31 (7 %)
Uzbekistan	20 (5 %)
Age
<35	152 (36 %)
35+	272 (64 %)
Sex
Female	308 (73 %)
Male	116 (27 %)
Primary medical specialty
Adult/Pediatric Palliative Care	22 (5 %)
Pediatric Hematology/Oncology	285 (67 %)
All others	117 (28 %)
Years of experience
0–10 years	168 (40 %)
11+ years	256 (60 %)
Training in Palliative Care
Yes	81 (19 %)
No	343 (81 %)
Access to Consultation
Yes	230 (54 %)
No	194 (46 %)
Number of patients died in care
0–5 patients	361 (85 %)
6+ patients	63 (15 %)

^*Ehrlich B, Movsisyan N, Batmunkh T, et al. A Multi-Country Assessment in Eurasia: Alignment of Physician Perspectives on Palliative Care Integration in Pediatric Oncology with WHO Guidelines. Cancer In Press 2020.

Figure 1. Eurasia Regional Map by Access to Palliative Care Consultation.

This regional map displays the percent of respondents in each country who indicated in a multiple-choice question that they had “access to a pediatric palliative care expert for consultation in [their] practice” (n=424). Access within each country ranged from 18% to 96%, with lowest access marked in red and highest access in green. Of those that indicated access to palliative care consultation (n=230), 92% had access to physician, 27% had access to a psychologist, 16% had access to a social worker, and 13% had access to a nurse.

Timing of Palliative Care Integration

The majority of providers (64%) indicated that initial palliative care consultation in their practice typically occurs when curative therapeutic options are no longer available. Others reported that palliative care commonly becomes involved at the time of disease relapse or progression (35%), high symptom burden (41%), and at the end of life (31%). Notably, 20% of providers reported that palliative care is never consulted for children with cancer (see Figure 2).

Figure 2. Ideal vs. Actual Timing of Initial Palliative Care Consultation in Eurasia.

Summary of responses (n=424) to multiple choice questions asking when initial palliative care consultation for a child with cancer typically occur the respondent’s setting and when they believe this should ideally occur. Respondents were instructed to choose all options that apply. This figure displays the percent of physicians who indicated each option and the statistically significant difference between the two groups. When comparing the earliest selected timing option (converted to a numeric scale), physicians indicated that the ideal timing of initial palliative care consultation for a child with cancer is statistically significantly earlier than typical timing (p <0.001).

35% of respondents indicated that palliative care integration into childhood cancer care often or always occurs too late in their setting. This was more often reported by palliative care specialists compared to non-specialist (59% vs 34%, p=0.015), physicians without access to palliative care consultation (40% vs 30%, p=0.021), and those with more experience with patient death (46% vs 33%, p=0.045; see Supplemental Table 3). These findings were substantiated by qualitative analysis of free text responses, indicating that “consultation with a palliative care specialist usually occurs later than I would like” (oncologist) and “is generally required earlier then when occurs in reality” (oncologist).

When asked about typical versus ideal timing of palliative care consultation, the majority of respondents (67%) indicated that ideal timing should be earlier than what typically occurs in their setting (p<0.001, Figure 2). For example, 30% of physicians believed palliative care integration should occur at diagnosis for all children with cancer, while only 9.5% of respondents indicated that this actually occurs (p<0.001, Figure 2). This was echoed in written responses, with some noting “it is necessary to involve palliative specialists at diagnosis for all patients” (oncologist). For high risk patients, 47% of physicians believed that palliative care should be consulted at initial diagnosis, while 19% reported this typically occurs (p<0.001). While 20% of physicians reported that children with cancer never receive palliative consultation, less than 1% of respondents believed that this should be the case (p<0.001). Physicians with palliative care education perceived a significantly greater difference between ideal and typical timing of consultation compared to other respondents (p<0.005).

While physicians generally desired earlier integration of palliative care, the majority indicated that disease relapse/progression (55%), high-symptom burden (54%), and exhaustion of curative options (54%) were the ideal times for palliative care initiation (Figure 2). Mention of later time points in disease progression were corroborated in qualitative data, as ideal timing for palliative care integration was frequently described to be “after the recognition that the patient is incurable, rapid progression of cancer, deterioration of life,” (oncologist) or “when treatment options have been exhausted” (oncologist).

Barriers

All barriers to palliative care integration with childhood cancer care listed in the survey were indicated as somewhat or extremely important by at least half (>51%) of respondents (see Table 2 for complete list of barriers). The most significantly ranked barriers included “lack of home-based services,” “limited access to palliative care specialists or services,” and “family resistance to involvement of palliative care.” However, qualitative analysis of survey responses showed variability in the perceived impact of these barriers (refer to Supplemental Table 4 for additional participant descriptions of all qualitative codes). Analysis of quantitative and qualitative data identified structural (systemic, institutional) and cultural (physician, family, and societal attitudes) barriers, further described below, that impede early integration of palliative care.

Table 2.

Barriers to Early Integration of Palliative Care

Barrier	Respondents Indicating Somewhat/ Extreme Importance (n=424)	Mean Score (SD)*
Lack of home-based services	86%	4.37 (1.11)
Limited access to palliative care specialists or services	85%	4.29 (1.07)
Family resistance to involvement of palliative care	80%	4.10 (1.07)
Limited physician knowledge on the role of palliative care	79%	3.95 (1.05)
Physician discomfort in raising the topic of palliative care with families	72%	3.75 (1.07)
Physician desire to maintain hope	68%	3.73 (1.37)
Uncertainty about patient prognosis	68%	3.72 (1.05)
Time constraints of pediatric oncologists during consultation	61%	3.54 (1.11)
Cost of palliative care consultation and treatment	51%	3.30 (1.48)

^*The 5-point likert scale is assigned numeric value (1=“Extremely Unimportant” and 5=“Extremely Important”); the mean score was calculated for each barrier based on the numeric value assigned by all respondents.

Limited Access

Limited access to palliative care specialists was overwhelmingly indicated by respondents as somewhat or extremely significant based on quantitative analysis (85%, Table 2). Access to palliative care consultation in each country, however, was not associated with gross national income (GNI; p=0.322) or country income group (p=0.425, see Supplemental Table 5). Respondents elaborated in written responses that lack of access not only included a shortage of palliative care physicians and insufficient trained specialists in the field, but the general absence of palliative care consults or specialized service that includes multidisciplinary care delivered by social workers and psychologists: “palliative care specialists for the most part are lacking in the majority of hospitals (almost all). And in fact, it is quite difficult to get patients to palliative care in its entirety” (intensivist).

Structural Barriers

Limited access to palliative care was largely attributed to structural barriers, both systemic and institutional. Although 86% participants identified lack of home-based services as the most significant barrier to earlier integration of palliative care (Table 2), qualitative responses focused on a general lack of resources on a national scale and lower quality of palliative care services in rural areas. Physicians described that “in the region, there is no palliative care specialist” (surgeon) and that “palliative care for children with cancer is inaccessable in the region” (oncologist). Specifically, flaws within national legislature included poor financing, “population inaccessibility to opioid analgesics” (oncologist), and also “strict regulation of pain management [policies]” (palliative care physician) such as “the need to file additional documentation because of age restrictions” (pediatrician) which prohibit prescription of opioids to younger children.

In large part, inadequate access was also attributed to a lack of effective palliative care education and “standards to assist cancer patients [which] do not regulate the time to attract specialists of palliative care” (orthopedist). Such systemic barriers result in physician shortage and heavy workloads within hospitals, “[whose] role is taken over mainly by oncohematologists and partly psychologists” (oncologist). Consequently, a lack of specialists in their setting of practice shifts the work of palliative care physicians toward “the work of intensivists because [the patients] lie in the ICU until the end of life” (intensivist) or “[of] hospice specialists only when it comes to the transfer of the child” (oncologist).

Institutional barriers further extend beyond limited hospital bed capacity to “[the] lack of mutual understanding between specialists” (palliative care physician) and lack of communication and collaboration across institutions— particularly necessary in the setting of delivery of palliative care services solely in hospices at the end of life. Moreover, administrative obstacles were often noted, with perception of institutions as submissive to the “authority of a leader who does not recognize the importance of palliative care,” but rather “believes that palliative care is ‘extra’” (palliative care physician). These factors were less captured via quantitative analysis, with institutional and logistical barriers, such as cost and physician time constraints, ranked as least important; 51% and 61% physicians, respectively, noted these barriers as significant (Table 2).

Physician Attitudes

While 79% of respondents noted limited physician knowledge as a significant impediment to palliative care integration (Table 2), free-text responses focused not only on a lack of competent oncologists trained in palliative care, but also physician attitudes. Limited physician knowledge was described as “[a] lack of understanding of the essence of [palliative] care” (oncologist), yet pediatric oncologists were further characterized by their resistance to involve palliative care at earlier stages of the disease. In part, this reticence was attributed to “the pathological ambition of oncologists” (palliative care physician) who “perceive the impossibility of cure, as their failure and continue aggressive therapy, even when it does not make sense” (palliative care physician). Alternatively, the delay in referring a patient for palliative care consultation was explained by the “self-confidence of the attending physician” (oncologist) with the “hope to improve the patient’s condition and cure” (oncologist).

Family and Societal Attitudes

Respondents described perceptions of family refusal and parent un-readiness to discuss palliative care, alongside societal misperceptions conflating palliative care and end-of-life care: “this term is perceived by society as a predictor of death of the patient” (oncologist). Descriptions of parent illiteracy and inaccessibility of information further contributed to the lack of knowledge and acceptance of palliative care. These qualitative findings support quantitative data of physician-perceived family resistance as an important barrier to palliative care involvement (80%).

Demographic Impacts on Perceived Barriers

Respondent demographics, such as specialty, years of experience, and exposure to patient death did not impact the perceived relative importance of barriers to the integration of palliative care. However, physicians with access to a palliative care consultation (p=0.012) and a history of palliative care education (p=0.033) were significantly less likely to feel that physician discomfort in raising the topic of palliative care with families was a barrier to palliative integration (Supplemental Table 6). Perceived barriers also varied in significance across countries, including: perception of family resistance (p=0.035), lack of home-based services (p=0.038), and cost (p<0.001) (see Figure 3 and Supplemental Table 7 for barriers by country).

Figure 3. Heat Map of Significant Barriers of Palliative Care Integration by Country.

The heat map displays the importance assigned by respondents (n=424) to each potential barrier to early integration of palliative care for pediatric oncology patients in their setting. The figure is clustered by country, with countries where physicians scored barriers more similarly displayed closer together. 5-point Likert scales were converted to numeric values with 1=“Extremely Unimportant” and 5=“Extremely Important” barriers. Numbers represent the mean score within each country for every barrier.

Need for Systemic Change

Ultimately, the barriers described by qualitative responses evoked a desire for systemic change in the status quo to facilitate earlier integration of palliative care in the care of children with cancer. Respondents called on the “need to develop this area of ​​health care” (oncologist) and “to organize a full-time [palliative care] service” (oncologist), while simultaneously describing education of physicians, higher authorities, and families as “necessary to transform the mindset” (oncologist). Consequently, numerous respondents outlined systemic and institutional action items that would fulfill the “need for more early and gradual integration of palliative care into the work of oncologists” (palliative care physician).

Discussion

Despite known clinical benefits and cost-effectiveness, access to palliative care in pediatric oncology remains limited in LMICs, decreasing the quality of care delivered to children with cancer. The ADAPT study provides a comprehensive assessment of provider attitudes on the timing and associated barriers to palliative care integration in childhood cancer care among 11 Eurasian countries. Our findings reveal that palliative care for children with cancer in Eurasia is generally offered too late – either when curative options are no longer available or at the end of life. Unsurprisingly, those who reported access to palliative care consultation within their practice were less likely to report late initiation of palliative care, suggesting that palliative care is integrated earlier when it is more available.

Importantly, this study highlights a general desire among Eurasian physicians for initial palliative care consultation to occur significantly earlier in a child’s cancer treatment. Yet while physicians reported a desire for earlier palliative care integration, they continued to describe the ideal timing for palliative care involvement to occur later in the course of illness (i.e., at times of high symptom burden or exhaustion of treatment options) than recommended by WHO guidelines (i.e., at diagnosis of an illness with an anticipated poor prognosis).² In part influenced by physician uncertainty in 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

Our findings provide a possible explanation for the observed gap between typical and ideal timing of palliative care integration. Physicians identified barriers extending from societal and physician attitudes to cost and availability of palliative care services. Suboptimal access to palliative care specialists and home-based services emerged as the most significant barriers to early palliative care integration. Access to palliative care consultation ranged widely by country (18% to 96%) with no association between higher GNI and increased access to consultation among the participating countries. Qualitative analysis was vital in elucidating additional structural barriers to quality care, particularly in rural regions. Poor financing, physician shortages, and exclusive delivery of palliative care in hospices demonstrate insufficient infrastructure to support palliative care services within pediatric oncology centers in Eurasian countries. These findings are corroborated by studies in other resource-limited settings, in which financial and structural barriers drive lack of access, as compared to high-income countries where family and physician attitudes are identified as primary barriers.^9,10,14,22

In 2009, Lynch et. al identified similar barriers to palliative care delivery in Eurasia such as limited access to specialists and stringent federal support, revealing a disappointing lack of regional progress to increase availability of palliative services over the past decade, particularly in childhood cancer care.¹⁶ These results highlight the significance of structural barriers to palliative care integration in limited-resource settings and emphasize the importance of raising awareness and empowering local governments to support health care system infrastructure and increase hospital capacity. Increased financing, staffing, and training of palliative care specialists must be supported by nationally-outlined guidelines, supported by the Ministry of Health, that promote timeliness of palliative care provision and are adapted by key stakeholders to align with respective country political and cultural preferences. Institutional leadership must further provide support to structure multidisciplinary palliative care teams within hospitals and home-based brigades to ensure continuity of care and smooth transitions of care between care settings. Prior experience with successful implementation of pediatric palliative care services in LMICs, including Belarus, demonstrate that both hospital and home-based palliative care programs are sustainable, effective, and accessible modes of care that have potential to decrease health care costs for cancer patients.^23–25

Opioid availability was also identified by providers as a major barrier to palliative care delivery in the Eurasian region. In part, opioid inaccessibility was attributed to lack of access to medications, particularly in correct dosages and formulations for children.^26,16 Additionally, respondents in our survey mentioned strict federal regulations that bar or add administrative burden for physicians to prescribe nationally available opiate medications to children. These findings call for the creation of palliative care standards that not only increase opioid supply, but also facilitate prescription of available opioids to ensure adequate pain control and symptom management in children with cancer. Policy change must go hand-in-hand with provider education to address physician misconceptions and fear of opioid prescription to pediatric oncology patients, as well as to increase awareness of recent amendments to laws regulating opiate prescription.²⁶

Moreover, limited physician knowledge and late referral practice patterns are consistent with findings from the ADAPT study that identified conflation of palliative and end-of-life care among phyicians.¹⁸ Respondent descriptions of physician ambition and stigma of failure among healthcare professionals demonstrate a perceived conflict among providers between oncology and palliative care. These findings align with published data from other resource-limited settings that attribute delayed palliative care to physician attitudes, discomfort, and need to control patient care.^13,14,27 However, contrary to physician perceptions of family unreadiness and resistance to palliative care consultation, children with cancer and their parents value and express interest in early integration of palliative care in high-resource settings.²⁸ Limited available data from LMICs illustrate that while parents resisted direct communication between the pediatric palliative care team and the patient, parents valued increased information, communication, social support, and adequate pain management.^29,30 Further investigation is necessary to determine how these findings may translate to countries in Eurasia and to develop effective educational programs that address physician misperceptions, challenge perceived stigma, and improve interdisciplinary communication.

This study has several limitations. Differences in the size of the physician workforce in each country resulted in variable distribution strategies and response rates. While countries utilizing listserv distribution had lower response rates, countries relying on hospital-based distribution were susceptible to snowball sampling bias. Our strategy, however, utilized the knowledge of local leaders and key stakeholders to develop optimal distribution strategies to maximally capture eligible respondents within each country; ultimately, we obtained a sufficient respondent sample from each country to enable analysis of country-specific barriers in the region. For these reasons, we believe the study findings are a valid representation of physician perspectives in Eurasia.

Additionally, our reliance on electronic survey distribution likely under-represented provider perspectives from more remote, lower-resourced regional centers, which are often more poorly financed and have greater resource-limitations. Therefore, these findings may present the “best-case scenario”, underrepresenting the cultural, educational, and structural barriers that are likely more prevalent in rural areas. Lastly, this survey was developed based on identified barriers from literature primarily conducted in high-income countries, which may not be generalizable to this region. While qualitative analysis of free-text responses deepened our understanding of respondent perspectives by identifying additional barriers not listed in the quantitative survey, it revealed the need for further comprehensive qualitative research in cross-cultural studies of palliative care in Eurasia.

In summary, this study is the first to describe physician perceptions of delayed timing of palliative care integration in pediatric oncology care in Eurasia, identifying provider desire for earlier palliative care involvement in childhood cancer care. Our results demonstrate an urgent need for targeted, federally-sponsored efforts to address identified structural and cultural barriers, adapted to the local political, economic, and cultural context of each country in the region. Such interventions are essential to improving not only the quality of palliative care, but fulfill the WHO Global Initiative for Childhood Cancer imperative to reduce suffering for all children with cancer.³