A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelines
The Assessing Doctors' Attitudes on Palliative Treatment Research Group includes Bella Ehrlich, Narine Movsisyan, Tsetsegsaikhan Batmunkh, Ella Kumirova, Marina Borisevich, Kirill Kirgizov, Dylan Graetz, Michael McNeil, Taisiya Yakimkova, Anna Vinitsky, Chen Li, Zhaohua Lu, Erica Kaye, Justin N. Baker, Asya Agulnik, Gevorg Tammamyan, Reiman Ismail-Zade, Baglan Baizakova, Riza Boranbaeva, Sultan Stambekov, Tetiana Nickelsen, Roman Kizyma, Sapura Ibragimova, Rodica Golban, and Rodica Mindruta-Stratan.
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.
Introduction
The World Health Organization (WHO) defines palliative care as the prevention and relief of physical, developmental, psychosocial, and spiritual suffering of patients and their families facing life-threatening illness.1 Early integration of palliative care is identified by WHO as “an ethical responsibility of health systems” in the management of children with serious illness, regardless of local resource limitations.1, 2
Early integration of palliative care is critical for pediatric oncology patients and has been shown to significantly improve symptom management, family communication, and quality of life for pediatric patients with cancer and caregivers while decreasing patient suffering and parental psychological distress.3-6 Furthermore, palliative care integration is associated with fewer invasive procedures, increased hospice involvement, and lower odds of dying in an intensive care unit and represents a cost-effective intervention in resource-limited settings.7-11 Notably, all literature evaluating the outcomes of pediatric palliative care comes from high-income countries.
Despite the known benefits of palliative care integration for children with cancer, palliative care services do not exist in more than 60% of countries, with decreased access in low-to-middle-income countries (LMICs).12, 13 In resource-limited settings, decreased reporting of pain symptom control, a lack of emotional and bereavement support, and limited interdisciplinary communication hinder the quality of cancer care.12, 14-17 The disproportionate global burden of childhood cancer in LMICs demands increased availability of high-quality, comprehensive palliative care to address patient and family suffering and needs in these settings.17
Although structural barriers, such as a lack of access to services and other financial constraints, limit utilization of palliative care services, an underlying stigma among physicians treating children with cancer further impedes the integration of palliative care into disease-directed therapy, even when resources are available.18, 19 Studies analyzing provider perceptions of palliative care in pediatric cancer, predominantly conducted in high-income countries, find that nearly half of physicians do not initiate palliative care consultations until after the termination of disease-directed treatment or at the end of life.20 Furthermore, discrepancies persist between physicians' and families' perceptions of adequate pain control in children with cancer at the end of life, affecting the quality and effectiveness of delivered care.3 To date, however, limited studies have analyzed provider perspectives on these issues in LMICs.
The Eurasian region, representing Eastern Europe and Central Asia, is a geographically and culturally distinct region with a shared history and similar medical systems. Across this region, countries experience wide variability in outcomes and age-standardized disability-adjusted life-year rates for childhood cancer.14, 17 Facilitated by St. Jude Global and the WHO Global Initiative for Childhood Cancer,21 11 initial countries formed the Eurasian Alliance of Pediatric Oncologists to improve childhood cancer care in the region. Participating countries are primarily low- and middle-income and, with the exception of Mongolia, are all Russian-speaking. To date, there has been no comprehensive evaluation of physician perspectives on palliative care in the region. The objective of this study was to assess the perspectives and knowledge of physicians caring for children with cancer on palliative care in 11 countries in Eurasia.
Materials and Methods
Instrument Design
The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was designed for physicians of all specialties who care for pediatric oncology patients in the Eurasian region. This study population was chosen because physicians are typically those making decisions around palliative care consultation and integration in this region. Initial survey items were developed on the basis of WHO guidelines and a review of the published literature on provider perspectives on palliative care, physician responsibility, and other ethical considerations.1, 22-25 The study received a priori approval from the Instititual Review Board.
Two panels of 5 American palliative care experts and 3 Eurasian palliative care experts serially tested survey items in English until a final consensus was achieved. Bilingual collaborators with expertise in pediatric palliative care and pediatric hematology/oncology further revised the survey for content validity and cultural relevance. The survey was pilot-tested by 12 English-speaking physicians who were representative of provider specialties in the target survey population, including pediatric oncologists/hematologists, palliative care specialists, intensivists, and surgeons. Feedback then was used to optimize item content and linguistic face validity.
Subsequently, survey questions were translated into Russian and Mongolian by bilingual native speakers. The translations underwent iterative rounds of review by regional collaborators to optimize colloquial syntax, comprehension, and construct as well as cultural and linguistic face validity. The survey was pilot-tested by 13 Russian-speaking physicians and 5 Mongolian-speaking physicians, who were representative of the diversity of specialties in the target population. Adjustments were made on the basis of feedback, and surveys were back-translated and reviewed to ensure item construct consistency.
The final survey questions included the following 5 domains: timing and role of palliative care integration, patient suffering and harm, common misperceptions, interdisciplinary communication, and family communication and perspectives (see Supporting Fig. 1 for the final survey). ADAPT relies on quantitative items and uses a Likert scale and a multiple-choice format with open-ended questions to enrich data interpretation. The survey was distributed anonymously via an electronic platform (Qualtrics26) or a paper-based option in settings with limited technology access.
Target Sample and Distribution Strategy
The ADAPT survey was distributed in English, Russian, and Mongolian to physicians responsible for managing pediatric oncology patients across 11 participating countries: Armenia, Azerbaijan, Belarus, Kazakhstan, Kyrgyzstan, Moldova, Mongolia, Russia, Tajikistan, Ukraine, and Uzbekistan. The distribution strategy was individualized to each country's respective medical structure, workforce, and specific needs in order to maximally circulate the survey to all eligible participants. Within each country, potential survey participants were identified by local study leaders with comprehensive knowledge of the relevant professional societies, medical institutions, and workforce. Study leaders were instructed to distribute the survey to physicians of all specialties who treated children with cancer in their country. Distribution strategies ranged from predetermined contact lists within hospital centers to official national pediatric oncology and hematology listservs,depending on their availability in each country (see Table 1 for details of each country's distribution strategy).
| Country | Distribution Method | Total Distributed Surveys, No. | Total Answered Surveys, No. | Response Rate, % |
|---|---|---|---|---|
| Armenia | Electronic distribution via formalized contact list; paper version for those with limited technological access | 27 | 16 | 59 |
| Azerbaijan | Electronic distribution via formalized contact list | 22 | 17 | 77 |
| Belarus | Electronic distribution via formalized contact list | 55 | 23 | 42 |
| Kazakhstan | Electronic distribution via formalized contact list | 71 | 53 | 75 |
| Kyrgyzstan | Electronic distribution via formalized contact list | 19 | 16 | 84 |
| Moldova | Electronic distribution via formalized contact lists by specialty | 35 | 21 | 60 |
| Mongolia | Paper distribution in 3 main oncology centers in Ulaanbaatar | 29 | 25 | 86 |
| Russia | Electronic distribution via official listserv of National Society of Pediatric Hematologists Oncologists; partial follow-up via overlapping contact list | 1275 | 186 | 15 |
| Tajikistan | Electronic distribution via contact list by specialty, formalized by the Ministry of Health | 17 | 16 | 94 |
| Ukraine | Electronic distribution via formalized contact list in all regions and centers | 140 | 31 | 22 |
| Uzbekistan | Electronic distribution in urban hospitals via phone | 40 | 20 | 50 |
The ADAPT survey was primarily distributed electronically via the Qualtrics platform. Countries with limited technology or internet access were identified before distribution as requiring paper surveys, which were completed by respondents, delivered to a designated drop-off location, scanned by local study leaders, and manually entered into the electronic system for analysis. Both electronic and paper surveys were completed anonymously, and participation was optional at all centers. Only completed surveys were recorded by the electronic platform, and there were no missing data in either paper or electronic surveys used in the analysis. Local study leaders recorded how many providers received the survey to calculate response rates. The survey was closed after 3 months.
WHO Alignment
In accordance with WHO guidelines for pediatric palliative care, 15 statements in the survey were categorized to be factually accurate or inaccurate (Supporting Table 1).1 Each participant received a point for scoring correctly on a survey item if he or she indicated moderate or strong alignment with the correct response, and each participant received an overall score for percent alignment with WHO recommendations based on the number of correct responses to the 15 statements.
Statistical Analysis
Cumulative regional and country-specific demographic data were reported with descriptive statistics. The Shapiro-Wilk test tested the assumption of normality, based on which either the 2-sample t test or the Wilcoxon rank sum test was used to test differences among continuous variables between groups. The Pearson chi-square assessed differences among categorical variables when all cell counts were greater than 5; the Fisher exact test was used in other cases to test associations when any cell count was smaller than or equal to 5. Both univariate and multiple regression models were used to determine the predictors of WHO alignment scoring. In the multiple regression analysis, variables with P < .2 in the univariate analysis were included, and the stepwise variable selection was used to choose the variables with P < .05 on the basis of the Wald test. Russia was used as the reference group for calculating the country effect as the median scoring country and largest responder group. For secondary analyses, the 5-point Likert scale was assigned numerical values to conduct 2-sample paired t tests. The 5-point Likert scale was also collapsed into 3 categories (often/always, sometimes, and never/rarely) to compare the effects of demographic variables via the Fisher exact test or the Pearson chi-square test. Two-sided significance of P < .05 was used for the statistical methods. All analyses were performed with SAS software (version 9.4), and the heat map was generated with R software (version 3.6.2).
Qualitative Analysis
Written survey responses to free-text questions were translated into English by bilingual native speakers. A preliminary codebook was created from a combination of inductive and deductive approaches and encompassedcommon themes and recurrent phrases identified in the text.27 Each response served as 1 segment as a unit of analysis. Test coding on set groups of segments was conducted by 2 coders to refine codes and definitions, and the codebook was finalized through a reconciliation process to reach consensus within the analytic team. Fluent members of the analytic team were able to refer to Russian responses to provide further clarification as needed. Responses were coded by 2 coders. After double coding, a κ value of 0.90 ensured interrater reliability, and a third reviewer assisted with resolution of code disagreements. All data analysis was performed with MAXQDA software.
Results
Sample Demographics
The ADAPT survey was completed by 424 physicians from 11 countries in the Eurasian region with a median country response rate of 60% (range, 15%-94%; Table 1). Most surveys were completed electronically (91%), with the remainder of participants completing paper surveys (n = 38 [9%]). The majority of respondents were pediatric hematologists/oncologists (67%), were female (73%), were younger than 50 years (78%), and had little experience with patient death (5 or fewer patients died under their care in the last year; 85%). A minority (19%) reported receiving some form of palliative care education or self-identified as palliative care specialists (5.2%; see Table 2 for complete demographics). Approximately half of the respondents (54%) reported access to a pediatric palliative care consultation in their practice setting. Among those who reported availability of palliative care consultation, providers typically indicated access to a physician (92%), with more limited access to interdisciplinary specialists such as psychologists (27%), social workers (16%), and nurses (13%).
| Demographics | Overall Sample (n = 424), No. (%) |
|---|---|
| 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 y | 152 (36) |
| ≥35 y | 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 y | 168 (40) |
| ≥11 y | 256 (60) |
| Training in palliative care | |
| Yes | 81 (19) |
| No | 343 (81) |
| Access to consultation | |
| Yes | 230 (54) |
| No | 194 (46) |
| No. of patients died in care | |
| 0-5 patients | 361 (85) |
| ≥6 patients | 63 (15) |
Role of Palliative Care in Childhood Cancer Care
The majority of the respondents described the role of palliative care in the care of children with cancer as including pain and symptom management (97%) and psychological support (92%). Significantly fewer respondents, however, identified other established components of palliative care, such as help in communicating bad news to patients and families (60%), aid in communication between the patient, family, and medical teams (56%), aid in family decision making around treatment options (51%), and help in clarifying the goals of care to the patient and family (39%). Few respondents indicated that palliative care has no role in cancer care for children (3.8%; Fig. 1A).
These findings were supported by a qualitative analysis of free-response survey questions, which were answered by 89% of the respondents (n = 379; see Fig. 1B for the code frequency map and Supporting Table 2 for the code definitions). In response to the question “What does palliative care mean to you?”, those mentioning components of palliative care (n = 346) most often described palliative care as addressing patient quality of life (72%), symptom management (37%), psychological support (30%), end-of-life care (24%), and medical care (23%), whereas religious and spiritual support (8.4%) and interdisciplinary communication (2.0%) were mentioned less frequently (Supporting Table 3). Of the respondents who described the timing of palliative care, the majority indicated that palliative care is administered when no other curative options are available (57%) and at the end of life (36%). Many responses focused on “improving the quality of life of incurable patients” as well as mitigating patient “pain and suffering.” A minority of respondents described palliative care more positively (7.7%) as a celebration of life (“decorate last days” and “giving life”), as a form of compassion (“without loneliness” and “caring and loving”), or as a mechanism by which to promote life and death with dignity (“dignified passing into another world”).
Alignment With WHO Guidelines on Palliative Care Integration
Based on the 15 questions aligning with WHO guidelines on palliative care integration with pediatrics (Supporting Table 1), the overall mean WHO alignment of the respondents was 70% (range, 7%-100%). In the univariate analysis, palliative care education, country of practice, specialty (adult or pediatric palliative care versus others), more than 10 years of work experience, access to palliative care consultation, and greater experience with patient death (6 or more patients died in the last year) were significant predictors of participant alignment with WHO guidelines, with the differences between groups ranging from 3% to 12% and with medical specialty having the largest difference between groups (12%; Table 3). Mean WHO alignment significantly varied across countries and ranged from 62% to 81% (Fig. 2 and Supporting Fig. 2). Multiple regression analysis demonstrated that country, palliative care education, and having 6 or more patients die in the last year were independent predictors of WHO alignment (Table 3).
| Demographic | Category | Mean WHO Alignment, % | P | Alignment Difference, % | |
|---|---|---|---|---|---|
| Univariate Model | Multivariate Model | ||||
| Age | .067 | Not significant | 3 | ||
| <35 y | 68 | ||||
| ≥35 y | 71 | ||||
| Sex | .066 | Not significant | 4 | ||
| Female | 71 | ||||
| Male | 67 | ||||
| Primary medical specialty | .001 | Not significant | 12 | ||
| Adult/pediatric palliative care specialists | 81 | ||||
| All others | 69 | ||||
| Years of experience | .034 | Not significant | 4 | ||
| 0-10 | 67 | ||||
| ≥11 | 71 | ||||
| Palliative care education | <.001 | .002 | 7 | ||
| Yes | 75 | ||||
| No | 68 | ||||
| Access to consultation | .043 | Not significant | 3 | ||
| Yes | 71 | ||||
| No | 68 | ||||
| Patients died in care in last 12 mo | .038 | .047 | 5 | ||
| 0-5 | 69 | ||||
| ≥6 | 74 | ||||
| Country | Individual countries | .002 | .001 | See Figure 2 | |
- Abbreviation: WHO, World Health Organization.
Among the questions used to measure WHO alignment, the most common regional misconceptions were as follows: 1) early consultation with palliative care causes increased parental burden and anxiety (23% disagreed), 2) it is difficult to know when a patient with cancer would most benefit from meeting the palliative care team (34% disagreed), and 3) palliative care is synonymous with end-of-life care (44% disagreed; see Table 4 for the complete ranked list).
| Question | % Correct |
|---|---|
| Early consultation with palliative care causes increased parental burden and anxiety | 23 |
| It is difficult to know when a patient with cancer would most benefit from meeting the palliative care team | 34 |
| Palliative care is synonymous with end-of-life care | 44 |
| Palliative care for children with cancer can be delivered by health care workers of all disciplines, not only by palliative care specialists | 60 |
| Involving palliative care suggests that the oncologist has failed in the mission to cure the patient | 68 |
| Involving the palliative care team early has negative effects on the relationship between the oncologist and the patient and family | 71 |
| Palliative care can be integrated with disease-directed therapy | 74 |
| Palliative care is incompatible with curative care | 76 |
| Involvement of palliative care undermines the role of the pediatric oncologist as the physician in charge of patient care | 81 |
| Children with cancer who receive palliative care die earlier than those who do not | 81 |
| Palliative care is appropriate at any stage of treatment in a child with high-risk cancer | 84 |
| Early integration of palliative care for all children diagnosed with cancer would decrease patient suffering | 86 |
| Children with advanced and incurable cancer often suffer at the end of life | 87 |
| Early integration of pediatric palliative care with cancer care would improve interdisciplinary communication | 88 |
| Involvement of palliative care during cancer therapy gives greater attention to quality of life and symptom management (eg, pain, constipation, dyspnea, and fatigue) | 89 |
Impact of Palliative Care Education
Prior palliative care education not only affected physician knowledge but also influenced perceptions and experiences around palliative care and the end of life (Table 5). Respondents with palliative care education were significantly less likely to believe that children receiving palliative care die earlier than those who do not (90% disagreed vs 79%; P = .005) and that administering opioids to patients in pain hastens death because of respiratory depression (94% disagreed vs 74%; P < .001).
| Palliative Care Education (n = 81), No. (%) | No Palliative Care Education (n = 343), No. (%) | P | |
|---|---|---|---|
| Involving palliative care suggests that the oncologist has failed in the mission to cure the patient: | .029a | ||
| Disagree | 62 (76.5) | 225 (65.6) | |
| Neutral | 1 (1.2) | 29 (8.5) | |
| Agree | 18 (22.2) | 89 (25.9) | |
| Palliative care for children with cancer can be delivered by health care workers of all disciplines, not only by palliative care specialists: | .013b | ||
| Disagree | 15 (18.5) | 119 (34.7) | |
| Neutral | 6 (7.4) | 29 (8.5) | |
| Agree | 60 (74.1) | 195 (56.9) | |
| Children with cancer who receive palliative care die earlier than those who do not: | .005a | ||
| Disagree | 73 (90.1) | 272 (79.3) | |
| Neutral | 1 (1.2) | 41 (12.0) | |
| Agree | 7 (8.6) | 30 (8.7) | |
| Involving the palliative care team early has negative effects on the relationship between the oncologist and the patient and family: | .054a | ||
| Disagree | 66 (81.5) | 233 (67.9) | |
| Neutral | 5 (6.2) | 45 (13.1) | |
| Agree | 10 (12.3) | 65 (19.0) | |
| Administering opioids to patients in pain hastens death because of respiratory depression: | <.001a | ||
| Disagree | 76 (93.8) | 254 (74.1) | |
| Neutral | 1 (1.2) | 32 (9.3) | |
| Agree | 4 (4.9) | 57 (16.6) | |
| In my setting of practice, palliative care consultation is available when I feel it is needed for a child with cancer: | <.001b | ||
| Never/rarely | 13 (16.0) | 126 (36.7) | |
| Sometimes | 14 (17.3) | 63 (18.4) | |
| Often/always | 54 (66.7) | 154 (44.9) | |
| I have felt burdened by my inability to control the suffering of children at the end of life: | .021b | ||
| Never/rarely | 18 (22.2) | 37 (10.8) | |
| Sometimes | 21 (25.9) | 94 (27.4) | |
| Often/always | 42 (51.9) | 212 (61.8) |
- a Fisher exact test.
- b Pearson chi-square test.
Overall, 60% of the respondents reported that they always or often felt burdened by their inability to control the suffering of children at the end of life; feelings of burden were significantly less prevalent among those with palliative care education (52% vs 62%; P = .021) and among palliative care specialists versus other specialties (36% vs 61%; P = .048).
Ultimately, the majority of the respondents (95%) reported that they would like to receive more palliative care education. Those providers desiring more education scored 19% higher in WHO alignment than those who showed less interest in learning more about palliative care (71% vs 52%; P < .001).
Attitudes Toward Palliative Care
Almost half of the providers (45%) indicated that quality of life is often overlooked in the face of cancer-directed treatment. The majority believed that children suffer at the end of life (87%) and that early integration of palliative care would decrease patient suffering (86%). However, 57% agreed that physicians typically continue to recommend cancer-directed treatment for children with advanced and incurable disease (Supporting Table 4).
Respondents reported generally being confident about managing the physical (57%) and emotional needs of their patients (63%), but fewer felt comfortable about addressing grief and bereavement (45%), with 67% of respondents reporting a lack of confidence in managing at least 1 of these components of palliative care. Palliative care education did not significantly influence confidence in delivering any component of palliative care (Supporting Table 5). Respondents' assessment of their comfort was higher than their assessment of the comfort of other physicians in their setting in providing all 3 types of care addressing: physical needs (P = .011), emotional needs (P < .001), and grief/bereavement support (P = .018; Supporting Table 6). Further results for relevant physician perspectives are summarized in Supporting Table 4.
Discussion
WHO advocates for early integration of palliative care as a standard of care for all children with life-threatening illness and specifically for children with cancer. Universal implementation is hindered by numerous factors such as provider attitudes, misconceptions, and a lack of knowledge of palliative care.1 Understanding these perspectives is imperative for guiding educational interventions designed to align provider practice with WHO guidelines. Provider perspectives likely differ globally, and little is known on this topic in the Eurasian region. To our knowledge, this is the first study of provider perspectives on palliative care in this region.
In this large, international survey of physicians who care for children with cancer, we demonstrated suboptimal alignment (70%) with WHO guidelines on this topic, and this suggests a knowledge gap that may affect the quality of care provided in this region. There are limited data on physician knowledge of palliative care in other resource-limited settings; however, these results are comparable to previous results finding that physicians had a mean score of 68%.28 Respondent alignment with WHO guidance on palliative care integration varied greatly in our study both among individual participants (7%-100%) and by country (62%-81%). In a multiple regression analysis, independent predictors of higher WHO alignment included previous palliative care education, more experience with patient death, and country of practice. The effect of these factors on WHO alignment, however, was small, suggesting that additional factors likely influence perspectives.
In line with the published literature,29 commonly held misperceptions centered around family communication. They included beliefs that the involvement of palliative care has a negative effect on the relationship between the oncologist and the patient and family and that early consultation burdens parents and causes increased anxiety. Importantly, recent data demonstrates that, contrary to Eurasian provider beliefs, patients and parents often benefit and value early integration of palliative care in the context of pediatric cancer management.30
Supported by quantitative and qualitative survey data, providers in the Eurasian region perceive palliative care primarily in terms of end-of-life care, pain and symptom management, quality of life, and psychological support, whereas discussion of goals of care and communication of bad news were not readily identified as pillars of palliative care. These findings reveal a narrow understanding of the role of palliative care and potentially explain the perceived conflict between palliative care and disease-directed treatment. Approximately a third of the respondents agreed that the involvement of palliative care implies failure on behalf of the oncologist, and this suggests that many physicians do not recognize alignment between the goals of cancer care and palliative care.
Knowledge of palliative care, as indicated by WHO alignment, nonetheless does not indicate proficient clinical skills or comfort in providing components of palliative care to pediatric patients. Less than half of the respondents reported that physicians limit cancer-directed therapy in the setting of advanced and incurable disease, and this signifies that clinical practice, as perceived by physicians, does not align with WHO recommendations. The majority of the respondents (67%) reported a lack of confidence in providing at least 1 of the components of palliative care to their patients; among these components, respondents were least confident in providing grief and bereavement care. This is starkly lower than previously self-reported physician competence in managing palliative care needs in high-income settings (92%).29 This lack of confidence likely contributes to 60% of the respondents feeling burdened by their inability to manage the suffering of their patients at the end of life. Although those with palliative education felt less burdened, they did not report higher confidence in providing elements of palliative care, and this differs from the effects of palliative care education in other low-income settings.28
This study clearly captures low exposure to formal palliative care training among physicians caring for children with cancer in Eurasia (19%), with the majority of the respondents (81%) having no prior palliative care education. This represents an urgent need to increase access to palliative care training for physicians treating children with cancer in the region. Our findings further demonstrate the widespread demand for palliative care education among these physicians, with the vast majority (95%) desiring more education. Even among those with prior palliative care education, however, the effect of this training on WHO alignment was relatively small, and it did not improve comfort in providing elements of palliative care; this suggests that available palliative care education in the region may not only be limited, but also not optimally effective or aligned with international standards. These findings should inform the development of palliative care educational curricula for providers, as well as the organization of clinical residencies to build regional capacity and expertise. As demonstrated by the response variability across countries, local context significantly influences provider perspectives; thus, educational curricula must be tailored to meet the needs of local political, economic, and cultural contexts. This study expands our understanding of physicians' predominant attitudes regarding the role of palliative care in childhood cancer care in Eurasia and is a prerequisite to the creation of effective interventions aimed at improving the timeliness of palliative care integration and the quality of care provided to pediatric patients with serious illness and their families.
This study has several limitations. Differences in the size of the physician workforce and in the availability of physician listservs in each country resulted in different distribution strategies and variable response rates, with only 2 countries falling below 40%. Lower response rates in Russia and Ukraine may be attributable to the use of large listservs of all potentially eligible providers, whereas countries where the survey was directly distributed to eligible respondents had more robust rates. Listserv-based distribution was chosen in Russia and Ukraine because of a large number of centers providing pediatric cancer care and a larger pediatric hematology/oncology workforce eligible for study participation. In contrast, the remaining countries with a relatively small pediatric hematology/oncology workforce had no available listservs and relied on the country study leaders conducting hospital-based survey distribution. Although this approach may have introduced snowball sampling bias, we achieved a high median response rate and are confident that we distributed the survey to the majority of eligible respondents by leveraging local knowledge of the provider workforce. Although respondents from Russia are overrepresented in our study sample, Russian physicians had the median WHO alignment of all countries surveyed, and this prevented the study results and conclusions from being skewed. We were also able to demonstrate country-specific differences in physician perspectives and allowed for adapted educational interventions tailored to each local context.
Although our survey resulted in a smaller sample size in certain demographic categories (eg, physicians with palliative care education) and this may have limited our statistical power, our study obtained a large number of responses achieving adequate power to detect significant differences between groups. Similarly, we were able to identify small but statistically significant differences, such as the effect of palliative care education on WHO alignment. Smaller sample sizes in some groups, however, did result in very low cell counts for some variables, and this potentially affected the validity of significant findings, particularly those with P values close to .05. We believe that our overall conclusions, however, many of which had much lower P values, are generally valid.
A minority (9%) completed the paper survey; however, all recorded responses were complete, and paper surveys were entered into the electronic system; this unified data analysis and ensured accuracy. Because this study primarily relied on electronic distribution (91% of the surveys), our survey underrepresented provider perspectives from more remote, lower resourced regional centers, where provider knowledge is likely more limited. Therefore, these findings likely skew toward more well-resourced, specialized centers in the region, with correspondingly higher levels of education and awareness of palliative care. As a result, this study presents the best case scenario with respect to physician perspectives and knowledge. Nonetheless, we believe that these findings are valid to guide targeted development of palliative care educational initiatives in Eurasia because initial interventions will be targeted to large, specialized pediatric oncology centers managing the majority of childhood cancers in each country.
Finally, our assessment clearly identified a need to increase access to palliative care services in the Eurasian region in the field of pediatric oncology. More than half of the respondents did not have access to palliative care consultation, and the majority had no access to psychologists, nurses, or social workers; this suggests that other structural factors play a role in the delivery of pediatric palliative care in Eurasia beyond a lack of high-quality education. Although an assessment of palliative care perceptions and knowledge among pediatric oncology physicians is crucial in order to inform the development of targeted educational interventions, further analysis of regional and country-specific barriers must be conducted to better understand other challenges to high-quality palliative care integration into childhood cancer care. While this focus lies beyond the scope of the current study, we advocate for the investigation of these important questions in future work.
In conclusion, the ADAPT study is the first assessment of provider attitudes on palliative care integration into pediatric cancer care adapted to the language, political, social, and cultural context of the Eurasian region. Our study identified a number of knowledge gaps and misperceptions among physicians treating children with cancer in this region, with large variability in alignment with international standards as described by WHO. A respondent history of palliative care education affected alignment with WHO standards, perspectives, and experiences, and nearly all participants reported a desire for more education on this topic. Our results demonstrate an opportunity to improve palliative care integration into pediatric oncology care in this region through targeted, locally adapted education interventions with the ultimate goal of improving the quality of life for children with cancer.
Funding Support
This research was funded by the American Lebanese Syrian Associated Charities, the National Cancer Institute (grant R25CA23944), and the Framework in Global Health Scholarship at Brown University.
Conflict of Interest Disclosures
The authors made no disclosures.
Author Contributions
Bella S. Ehrlich: Conceptualization, data curation, formal analysis, funding acquisition, investigation, methodology, project administration, software, validation, visualization, writing–original draft, writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Narine Movsisyan: Writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Tsetsegsaikhan Batmunkh: Writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Ella Kumirova: Writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Marina V. Borisevich: Writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Kirill Kirgizov: Writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Dylan E. Graetz: Formal analysis, software, writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Michael J. McNeil: Writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Taisiya Yakimkova: Writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Anna Vinitsky: Writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Gia Ferrara: Formal analysis, software, writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Chen Li: Formal analysis, software, writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Zhaohua Lu: Formal analysis, software, writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Erica C. Kaye: Formal analysis, supervision, writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Justin N. Baker: Supervision, writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work. Asya Agulnik: Conceptualization, formal analysis, funding acquisition, methodology, supervision, validation, writing–original draft, writing–review and editing, review and approval of the final manuscript as submitted, and accountability for all aspects of the work.
