Assessment of Patient Barriers to Health Care in the Conflict-Impacted Areas of Eastern Ukraine

ASSESSMENT OF PATIENT BARRIERS TO HEALTH CARE IN THE CONFLICT-IMPACTED AREAS OF EASTERN UKRAINE

June 25, 2021

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Contents Acronyms ...... 4 Executive Summary ...... 4 Introduction ...... 5 Context ...... 5 Assessment Purpose and Hypothesis ...... 5 Methodology ...... 6 Theoretical Framework ...... 6 Literature Review ...... 7 Limitations of the Literature Review ...... 7 GOU Data Analysis ...... 7 Limitations of the GOU Data Analysis ...... 7 Population Surveys ...... 8 Limitations of the Population Surveys ...... 9 Partner Consultations...... 10 Ethical Considerations ...... 11 Findings ...... 11 Overview of Health Needs and Health Care Utilization ...... 11 Population Demographics ...... 12 Impact of the Conflict on Social Determinants of Health ...... 13 Disease Prevalence ...... 13 Health Care Utilization ...... 14 Key Barriers to Health Care ...... 17 Tier 1: Approachability & Ability to Perceive ...... 18 Tier 2: Acceptability & Ability to Seek ...... 25 Tier 3: Availability and Accommodation & Ability to Reach ...... 29 Tier 4: Affordability & Ability to Pay ...... 38 Tier 5: Appropriateness & Ability to Engage ...... 40 Recommendations ...... 44 Improve Data for Decision-Making ...... 45 Build Capacity of Health Care Providers and HCF Managers ...... 46 Increase Patient Literacy ...... 48 Enhance HCF Monitoring and Incentives ...... 49 Conclusions ...... 50 Annexes ...... 51 Annex 1. Literature Review Methodology Details ...... 51 Annex 2. Summary Table of Key GOU Data and Analysis...... 54 2

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Annex 3. Population Calculation Methodology ...... 56 Annex 4. Population Survey Questions ...... 59 Annex 5. Consultations with Partners ...... 68 References ...... 71

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

ACRONYMS ALOS Average Length of Stay CPD Continuing Professional Development CPH Center for Public Health CT Computed Tomography EECP Exit-Entry Check Point ERW Explosive Remnants of War GCA Government-Controlled Area (of Eastern Ukraine) GIZ Deutsche Gesellschaft für Internationale Zusammenarbeit GOU Government of Ukraine HCF Health Care Facility HRS USAID Health Reform Support Project IDP Internally Displaced Person IOM International Organization for Migration IP Implementing Partner MOH Ministry of Health of Ukraine MRT Magnetic Resonance Tomography MTOT Ministry of Reintegration of Temporarily Occupied Territories NGCA Non-Government-Controlled Area (of Eastern Ukraine) NGO Nongovernmental Organization NHSU National Health Service of Ukraine OCHA United Nations Office for the Coordination of Humanitarian Affairs OECD Organisation for Economic Co-operation and Development OSA Oblast State Administration PBF Performance Based Financing PHC Primary Health Care PMG Program of Medical Guarantees SOE (eHealth) State Owned Enterprise SHC Specialized Health Care SSS State Statistics Service of Ukraine USAID United States Agency for International Development WHO World Health Organization

EXECUTIVE SUMMARY The ongoing conflict in Eastern Ukraine has impacted population wellbeing and migration as well as infrastructure across sectors in Donetsk and Luhansk. The USAID Health Reform Support (HRS) project, co-funded by UK Aid and implemented by Deloitte Consulting LLP, theorized that people living in these conflict-impacted regions face unique barriers in accessing health care. To drive greater accessibility within the health care system in Ukraine, the HRS project undertook a mixed-method assessment to better understand the barriers to care in the Government-Controlled Area (GCA) of Eastern Ukraine. The assessment identified and mapped barriers to the ten dimension of access – approachability of care, patients’ ability to perceive health needs, acceptability of care, patients’ ability to seek care, availability and accommodations, patients’ ability to reach care, affordability, patients’ to pay, appropriateness, and patients’ ability to engage. With this comprehensive approach, the assessment found that patients in Eastern Ukraine face some major barriers that are similar throughout the country, such as poor signage at health care facilities (HCFs), low health literacy, lack of trust in health care providers, poor attitude of providers, lack of knowledge on health reforms and how to seek care, informal payments, lack of money to pay for health care, insufficient patient adherence, and low digital literacy. But patients in Eastern Ukraine also face some unique barriers, such as insufficient provider outreach and information-sharing,

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

safety concerns at HCFs, health workforce shortages, lack of specialized beds and equipment, inadequate HCF density, few disability accommodations, limited remote options, poor road/transport conditions, increased costs due to poor roads, poor patient satisfaction, inadequate information systems, and poor specialized health care outcomes. Additionally, vulnerable populations – who compose a greater proportion of the population in the GCA of Donetsk and Luhansk than other regions – face greater barriers to accessing health care. To overcome these barriers, HRS proposes the involvement of national, regional, local, and donor community stakeholders to improve data for decision-making, build the capacity of health care providers and HCF managers, increase patient literacy, and enhance HCF monitoring and incentives.

INTRODUCTION Context As Ukraine undergoes national health reforms to increase the population’s access to quality health care, the military conflict in Eastern Ukraine continues. Since 2014, the war in the Donbas region has resulted in over 14,000 casualties, 1.46 million internally displaced persons (IDPs), and the separation of the GCA and the Non-Government-Controlled Area (NGCA) in Donetsk and Luhansk oblasts [1]. The health reform designed and implemented by the Government of Ukraine (GOU), hallmarked by the Program of Medical Guarantees (PMG) and all its related components, affects the GCA of Eastern Ukraine as if Donetsk and Luhansk are like any other oblasts in the country. However, there are likely unique challenges in health care service delivery in the GCA of Donetsk and Luhansk due to the conflict in the region and its impacts on population migration, population wellbeing, and health care infrastructure. USAID has recognized this issue and called for programming to be “tailored to the unique challenges in the east and conflict-affected areas” in the Ukraine Country Development Cooperation Strategy [2]. This tailoring – whether at the level of the national GOU reform, regional policies, or local interventions supported by the donor and nongovernmental organization (NGO) community – requires data to inform decisions. However, there is currently insufficient data and analysis to inform this tailoring in a comprehensive way. Therefore, an agile assessment of the region must combine all available disparate data sources with real- time insights into the health care realities on the ground in order to facilitate data-driven decision-making by health reform policy-makers and implementers, enabling them to improve access to health care in Eastern Ukraine. Assessment Purpose and Hypothesis The HRS project conducted this assessment to improve the GOU, USAID, and other health sector stakeholders’ understanding of how to increase patient access to health care in the conflict-affected, GOU- controlled territories of Eastern Ukraine. We hypothesized that the Ukrainian population in the conflict-impacted areas of Eastern Ukraine face unique barriers in accessing health care, which can be addressed through targeted reforms or interventions in order to increase patient access to care. To prove this hypothesis, identify the primary barriers to care that patients face in Eastern Ukraine, and develop recommendations for the GOU and other health sector stakeholders, HRS conducted a multi-faceted assessment, combining insights from a literature review, an analysis of publicly-available GOU data, and real-time population surveys. Guided by the Access Framework and in collaboration with other projects and stakeholders working in Eastern Ukraine, this assessment identifies the greatest barriers in accessing health care along five tiers. The methodology is outlined in the section below. We hope that the national-level GOU, regional authorities, NGOs, and international donors will use this assessment and its recommendations to address patient barriers to health care through policies, programs, and other interventions, thereby improving access to health care and subsequently, long-term health outcomes.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

METHODOLOGY Theoretical Framework The Access Framework [3] takes a multi-level perspective on populations’ access to health care, combining both supply-side and demand-side factors into a comprehensive conceptual framework that captures that dynamic quality of health care access. On the supply side (i.e., providers of health care), the Access Framework identifies five dimensions of accessibility: 1) Approachability, 2) Acceptability, 3) Availability and accommodation, 4) Affordability, and 5) Appropriateness. On the demand side (i.e., patients), the Access Framework identifies five corresponding dimensions of populations’ abilities to interact with the dimensions of providers’ accessibility in order to achieve access: 1) Ability to perceive, 2) Ability to seek, 3) Ability to reach, 4) Ability to pay, and 5) Ability to engage. These ten dimensions are outlined in Figure 1 below. We also grouped the parallel dimensions into five tiers of access, as shown. With the collected data and insights organized along the Access Framework in this way, we could pinpoint the greatest barriers along this continuum of health care access. This segregation along the five tiers and ten dimensions enabled us to provide targeted, impactful recommendations.

Figure 1: The Five Tiers of Access

Worth noting, the fifth tier of the Access Framework (appropriateness of care and patients’ ability to engage) is not typically included in other analyses of accessibility. Levesque et al. explain, “one should not have access to health care based on geographical and organisational availability and affordability alone, but that access encompasses the possibility to choose acceptable and effective services,” and therefore, measures of “optimal care” are included in the Access Framework [3]. Because of this, we included readily- available and reliable data sources to shed light onto this fifth tier of access, but we did not attempt to assess quality of care in this study. Quality of care is a key dimension of healthcare service provision that is often overlooked in low-resource settings, even though it is a major barrier to achieving expected health care improvements in low and middle income countries [4-6]. Quality is a multi-faceted construct, including features of effectiveness, efficiency, accessibility, patient-centeredness, equity, and safety as well as structure, process, and outcome factors [7, 8]. Therefore, despite including some mention of quality- related indicators in this assessment (such as patient satisfaction), we do not intend to assess quality of

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

care, and we suggest that a more robust analysis is undertaken in the future to evaluate quality, pending the further development and availability of reliable quality-related data. Literature Review HRS conducted online searches between October 15, 2020 and February 15, 2021, covering materials from 2014 to present, with a focus on the last two years (2019-present). We also collected studies/assessments (including unpublished materials) directly from donors and implementing partners in Ukraine, such as the World Health Organization (WHO), Medicos del Mundo, Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ), ACTED REACH/IMPACT, USAID Economic Resilience Activity, and the United Nations Office for the Coordination of Humanitarian Affairs (OCHA). In total, we used 72 sources for analysis. We extracted data from these sources systematically, using a standardized table. For a complete description of the literature review methodology, including details on the online search and data extraction process, please see Annex 1. Limitations of the Literature Review The literature review had several limitations, with available time as the primary limitation. Standard review processes were followed; however, time restrictions caused standard limitations on thoroughness. We also did not systematically assess the document quality, and our findings are restricted by the information presented in the selected data sources, only six of which were peer-reviewed. Additionally, although we reached out to all major international donors providing support in Eastern Ukraine, we did not hear back from all partners that we contacted, and we did not contact smaller players, such as local NGOs in the area. Therefore, there may be more unpublished studies and resources that we did not capture in this review. Thus, although these results present an overview of available information on patient barriers to healthcare services in the conflict-impacted GCA of Eastern Ukraine, they should not be construed as possessing the robust depth and authority of a systematic review. GOU Data Analysis HRS collected publicly-available data from multiple GOU data sources, including the Ministry of Health of Ukraine (MOH), the National Health Service of Ukraine (NHSU), the State Statistics Service (SSS), the Donetsk Oblast State Administration (OSA), and the Luhansk OSA. For a table summarizing the key GOU data that we used in the report, please see Annex 2. Notably, our analysis uses a new overall population estimate for the GCA of Donetsk and Luhansk. Our population estimates are based on GOU population estimates for the entire oblasts (as of January 1, 2020), which we adjusted to exclude the population that lives in the NGCA and include IDPs who live in the GCA. IDPs are not counted in many official GOU statistics, but it is important to account for them in order to plan care based off residents’ needs. For a complete explanation and breakdown of our overall population calculation, please see Annex 3. Limitations of the GOU Data Analysis The analysis of GOU data also had limitations. Specifically, the greatest limitation is the population estimate for the GCA of Donetsk and Luhansk, which was used as the denominator in many calculations of health care availability and utilization. However, other than an overall number of IDPs in the oblasts, there is limited demographic data on IDPs. Therefore, when examining demographics, we could not use our overall population number as a basis for more nuanced population estimates (such geographic density, age breakdown, or gender breakdown), and therefore, we had to use the next best available data – typically, GOU statistics that exclude IDPs – to inform these assumptions. All our assumptions are detailed in the GOU data table in Annex 2, including the date of the data source. Notably, some of the data is over one year old (such as the unemployment rate, for example), but given the COVID-19 pandemic and its impact on daily life as well as the health sector, we consider this 2019 data to hold high value, especially for a post-pandemic environment and return to new “normal”.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Population Surveys The HRS team partnered with Premise – a U.S.-based data collection company that uses an innovative mobile phone application to distribute incentive-based surveys and data collection tasks to citizens. With over 4,000 contributors already using the application across Ukraine at the study’s start, the Premise platform enabled real-time collection of data about patient sentiments and behaviors as well as HCF locations and conditions. The HRS team designed custom surveys to collect data from the population in Donetsk GCA, Luhansk GCA, and Odessa. HRS chose Odessa as a comparison oblast for Luhansk and Donetsk based on its similar demographics and health care infrastructure, enabling HRS to more easily identify the barriers that are unique to the GCA in Donetsk and Luhansk. In addition to a demographic survey, HRS disseminated three surveys via Premise to contributors in these areas, as outlined below. HCF Validation Survey: In this survey, contributors were asked to locate HCFs based on geocoordinates/addresses provided by publicly-available NHSU data. Contributors needed to confirm HCF location, names, signage, disability accessibility, if operational, and condition, while still maintaining a safe distance from the HCF, given safety concerns during the COVID-19 pandemic. In addition to answering questions about what they saw, contributors submitted their geocoordinates and photos to validate their responses. Primary Health Care Survey: In this survey, contributors needed to answer questions about their opinions and utilization of primary health care (PHC). Contributors who identified as women and those who identified as guardians of minors received additional questions about gynecological care and child health care, respectively. All questions about PHC utilization referred to the past two years to account for anomalies over the past year given the COVID-19 context. Specialized Health Care Survey: In this survey, contributors needed to answer questions about their opinions and utilization of specialized health care (SHC) and other miscellaneous questions that could not fit within the PHC Survey. All questions about SHC utilization referred to the past two years to account for anomalies over the past year given the COVID-19 context. The complete list of questions from these surveys are in Annex 4. Additionally, HRS conducted nationwide surveys via Premise as part of another HRS activity measuring health care consumer awareness of health reforms, using the same methodology. Although most of this survey data is not relevant to the assessment of barriers in Eastern Ukraine, there were a few duplicate questions across both surveys, enabling the comparison of data from Eastern Ukraine with nationwide data. We included this comparison where possible in the analysis.

The surveys were conducted from January 21, 2021 to March 4, 2021, available to anyone who had the Premise application downloaded on their smart phone within the geographically-defined parameters of the oblast. All surveys were available in Ukrainian, Russian, and English languages, which the user selected based on their application settings. The majority of survey respondents (96.5%) used the Russian language version, with only 3.3% using Ukrainian and 0.3% using English. Premise incentivized contributors to respond to the surveys with small monetary rewards ranging from $0.40 USD for the PHC and SHC surveys to up to $5.50 USD for the HCF Validation Surveys, with the dynamic incentives changing based on response rates and timelines and distributed via Payoneer and Coinbase. Additionally, the application emphasized the anonymity of the surveys to contributors, encouraging honest responses. The total number of unique respondents for each survey is shown in the table below:

HCF Validation Survey: PHC Survey: SHC Survey: # of unique locations visited* # of unique respondents # of unique respondents Donetsk GCA 233 (out of 320 total) 473 326 Luhansk GCA 114 (out of 137 total) 266 248 Odessa 227 (out of 427 total) 627 369 8

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

*Only HCF data with a “high confidence” rating was used in the analysis; see Limitation sections below for more information.

The map below shows the HCFs that were visited by Premise contributors in the GCA of Donetsk and Luhansk. The HRS project continues to collect this data to validate HCF locations and features.

Figure 2: Map of Visited HCFs in the GCA of Donetsk and Luhansk

After closing the surveys, we aggregated the survey data and conducted statistical analyses to identify key barriers and differences between responses in the three oblasts. To do so, we grouped free response answers under the PHC and SHC Surveys, harmonized multiple entries for each HCF under the HCF Validation Survey, and tested statistical significance (using a p-value of 5%) for all differences. Additionally, we disaggregated responses by sociodemographic indicators and by distance from the contact line to see if the disaggregation changed the results; however, this disaggregation did not change results significantly and, in many cases, the sample size was too small to draw any conclusions from the disaggregation; therefore, all analyses in this report are based off of the total aggregate of responses. Limitations of the Population Surveys The population surveys had several critical limitations. First, the cross-sectional study did not allow us to determine causal relationships. Additionally, all surveys used self-reported data, risking response bias. In some cases, the sensitivity of the questions may have resulted in social desirability bias and informational bias, though this was partially mitigated by the anonymous distribution mechanism via the phone

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

application. Additionally, questions asking about health care interactions over the past two years may have been skewed by recall bias. We also acknowledge the limitations of the non-randomized sample using the mobile phone-based survey; this resulted in fewer responses from older people, who generally have less access to mobile phone applications compared to younger people and may prefer other modes of communication, as well as likely fewer responses from people with limited online literacy or restricted financial resources. This is demonstrated by the demographics of survey respondents. For instance, we estimate that approximately 20% of the population in Donetsk and Luhansk are over the age of 65 [9], but the population surveys via the Premise application captured less than 1% of respondents in Donetsk and Luhansk over the age of 60. Additionally, we estimated that 19% of the population in Donetsk and 27% in Luhansk are IDPs [10]; however, only 8-9% of survey respondents in Donetsk and Luhansk identified as IDPs. We applied weighting to account for these skewed demographics, but the weighting did not change the results significantly, likely due to the fact that the respondents from under-represented groups (e.g., age 60+) who participated in the survey are not representative of their demographic group overall due to their access to smart phone applications and high digital literacy. Notably, the breakdown of male/female and urban/rural respondents reflected the estimated population breakdown closely and therefore, the data is not biased toward gender or density of geographic residence. Another limitation is the number and lopsided distribution of respondents from the different oblasts, as seen in the table above. For the self-surveys, we aimed to obtain 384 respondents from each oblast for adequate statistical representativeness; however, we did not hit this target in Luhansk for the PHC survey and for all three oblasts for the SHC survey. Additionally, we received more respondents in Odessa for both self-surveys and subsequently, following the Law of Averages, the responses in Odessa oblast will be skewed towards the mean more so than in the other two regions. For the HCF validation survey, we hoped for Premise contributors to visit 100% of the HCF locations; however, contributors only visited 73% in Donetsk, 53% in Luhansk, and 83% in Odessa. Furthermore, we only analyzed data on HCFs once it reached a “high confidence” level, which was achieved once two Premise contributors with a certain trust score (based on their previous participation in data collection tasks) visited and thoroughly reported on the HCF. This ensured the reliability of the data. Looking at “high-confidence” HCFs only, we were limited to 115 HCFs in Donetsk (36% of all HCFs in Donetsk), 38 in Luhansk (28% of all HCFs in Luhansk), and 117 in Odessa (27% of all HCFs in Odessa). Despite these limitations, these surveys are among the most comprehensive in the region, and we concluded that the data still holds value. For the self-surveys, we theorize that because the Premise survey respondents are generally younger and digitally literate, they represent a segment of the population that likely has fewer health needs and greater access to health care. Therefore, we can use insights from this population to infer baseline barriers to health care and assume that the general population (which includes more people from vulnerable groups, such as elderly age groups and IDPs) face more profound barriers to health care. With this important caveat in mind, we proceeded with the integration of the population survey data insights with the insights obtained from the literature review and analysis of GOU data. Partner Consultations After compiling initial findings from the literature review, the GOU data analysis, and the population surveys, we reached out to partners in implementing or supporting projects in the region and/or related to health care accessibility and requested meetings to gather their feedback, validate our findings, and elaborate further on recommendations. Seven organizations agreed to meet with us and provide feedback between May 13 and May 21, 2021. These consultations included: the USAID Economic Resilience Activity, the Health Cluster Coordinator from the WHO, the USAID Ukraine Confidence Building Initiative, ACTED IMPACT Initiative, GIZ Perspectives for Eastern Ukraine, USAID Decentralization Offering Better Results and Efficiency, and Medicos del Mundo. More information on the methodology of these

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

consultations can be found in Annex 5. We also discussed our findings and recommendations with the Donetsk and Luhansk OSAs, including representatives of the Oblast Health Departments, on June 10, 2021. We used the feedback and input gathered through these consultations to further strengthen and supplement the findings and recommendations in this report. We expect to further elaborate, clarify, and revise our recommendations after we present and discuss this report to a larger audience of GOU counterparts and the donor community. Ethical Considerations Given the minimal risk imposed by our surveys, we did not seek Institutional Review Board approval. Based on international guidelines [11], we determined that our assessment was exempt from review given that it used publicly-available data combined with anonymized individual data from the smart phone application-based surveys. Regardless, our researchers adhered to the national ethical policies and international ethical best practices. All survey participants were over the age of 18, were given a detailed description of the Premise survey, provided informed consent online via the mobile phone application, were able to stop their participation in the survey at any time without needing a reason, and received rewards to compensate for the time and effort of their participation. All information provided from the survey respondents remained anonymous and confidential, and survey respondents only provided information based on their own experience. For privacy reasons, no personally identifiable information or personal health information of survey participants were provided to the study team in any format. Follow these links for further information on the terms and privacy policy of the Premise surveys.

FINDINGS Overview of Health Needs and Health Care Utilization

Figure 3: Population Density Maps for Donetsk and Luhansk

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Population Demographics With elderly people composing a greater proportion of the population, the health care and access needs may be greater in Donetsk and Luhansk. Overall, the literature suggests that a higher proportion of elderly people might be living in Donetsk and Luhansk compared to the rest of Ukraine [12- 17], likely due to the migration of younger people for work while elderly people and/or people with disabilities were left behind [13, 16, 18-20]. These findings are in line with GOU statistics, which indicate that approximately 22% of the population in the GCA of Donetsk and Luhansk is over the age of 65 versus 16% in Odessa and 17% in Ukraine overall [9, 21]. One study estimates that 30% of the people in need are elderly [22]. The percent of PHC declarations for patients over age 40 (58% in Donetsk and 60% in Luhansk versus 50% in Odessa and 52% in Ukraine overall) is further evidence of the older population [21]. This is notable because older populations have a higher prevalence of comorbidities, including chronic diseases, mental health issues, and disabilities [12-14, 16, 23]. Additionally, the majority of elderly people (87.25% of elderly women and men [24]) reported reliance on one source of income (pension) [14, 16, 25] and having debts for utilities [14], which might impede mobility and access to health information and health care services [13, 16, 20, 25, 26]. Corresponding the greater proportion of elderly people, there is a greater proportion of women in Donetsk and Luhansk, further complicating the area’s health needs. Women represent the majority of older people (with estimates ranging from 56% [13] to 76.3% [14]) in these regions. Additionally, out of 36.3% of older people who reported living alone, 87% were women [14, 24]. This is in line with the GOU statistics, where the percentage of women who are over the age of 65 is higher in Donetsk (24.5% of all women) and Luhansk (27.1%) than in Odessa (19.5%) and Ukraine overall (21.1%) [9]. Additionally, OCHA estimates that women and children constitute the majority (as much as 60%) of all people affected by the conflict in Donetsk and Luhansk [16]. Another source cites that 56% of the people in need are women [22]. Data also highlights that women, and in particular elderly women, might experience elevated social and economic vulnerabilities than men [14, 16, 24, 27], and elderly women might be more economically vulnerable compared to their male peers [13]. Furthermore, the literature presented evidence on statistically significantly higher psychological distress among women than men in the Donbas [28], stigma attached to revealing mental health problems [29], gender-based violence [13], and the lack of quality reproductive health care services in Donetsk and Luhansk, which might lead to increased risks of pregnancy-related morbidity and mortality [16]. Lastly, most healthcare workers and social workers are females (over 80%) [27], and women represent a majority of low-income earners (70%) [24, 27] as well as single parents [20]. Finally, out of those elderly people who reported experiencing at least one type of violence and abuse (2.3% of the population), the majority are women (86% of those who experience violence) [24]. Lastly, the population demographics and subsequent health needs in Donetsk and Luhansk are differentiated by a large number of people with disabilities and their region-specific barriers. According to the State Statistics Service of Ukraine, as of January 1, 2020, there were 2,703,006 persons with disabilities registered in Ukraine, with 160,749 in Donetsk (one of the top five highest numbers) and 49,475 in Luhansk [30]. Furthermore, one study estimated that 12% of people in need in the region are people with disabilities [22]. However, one study reported that although 69.7% of respondents had at least one functional impairment, only 11.5% had a registered disability, and among interviewed older women and men, it was only 9.12%, suggesting that disabilities may be under-registered in the region [14]. People with disabilities are especially vulnerable in the GCA, where some areas lack an accessibility- and disability-friendly environment, leading to inappropriate housing that suits specific conditions, social isolation or exclusion, and restricted access to essential services [31]. Furthermore, according to the official statistics in Ukraine, 4.16% of registered IDPs (over 17,087 people) have been injured as a direct consequence of the conflict, but IDPs (and others) may lack documents to prove their disability and eligibility for social services, hampering their access to specialized support [16, 31].

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Additionally, women with disabilities more often face domestic violence and other forms of sexual, psychological, and physical violence than able-bodied women in Ukraine [31]. Impact of the Conflict on Social Determinants of Health As people were forced to leave their homes due to the conflict, the GCA of Donetsk and Luhansk became home to a large number of IDPs, who may face unique barriers to care. The annexation of Crimea and hostilities in Eastern Ukraine led to numerous forced displacements, especially in the early years of the conflict. Since 2017, resettlement from the NGCA has stabilized at around 1.5 million people, with more than half living in the GCA of Donetsk and Luhansk. According to the International Organization for Migration (IOM), as of April 2020, there were 510,764 IDPs in the GCA of Donetsk and 280,437 IDPs in the GCA of Luhansk [10]. Therefore, according to our population estimates and adjusting for migration, IDPs compose roughly 19% of the population in Donetsk GCA and 27% of the population in Luhansk GCA. Additionally, the lengthy and bureaucratic procedures to register as an IDP result in the potential exclusion of over 30% of IDPs from the official registration and thus, support [14, 16, 24]. This under-registration may be cancelled out by the fact that many IDPs registered in the GCA may actually live in the NGCA and only register as IDPs to receive benefits. Therefore, the exact number of IDPs residing in the GCA is unknown. Although there is limited data on IDPs’ access to health care, one study found that 71.9% of IDPs in Ukraine reported that they were not able see a doctor for their noncommunicable diseases, suggesting that they may face substantial barriers to care [28]. Compared to the rest of Ukraine, the people of the GCA of Donetsk and Luhansk suffer disproportionately from unemployment and low income, which impact food security and are critical social determinants of health. According to GOU statistics from 2019, the unemployment rate in Donetsk and Luhansk is 13.6% and 13.7%, respectively, compared to 5.9% in Odessa and 8.2% in Ukraine overall [32]. Furthermore, the rate in Donetsk and Luhansk may actually be higher as it currently excludes IDPs. All in all, low economic security of people living in the Donbas was reported [33], with 27% higher odds to experience poor financial wellbeing for those living near the contact line compared to Ukrainians who live 700 kilometers away [14]. A lack of financial resources also contributes to food insecurity, which is a persistent issue in the region [14, 34-36]. The conflict also negatively impacted the water, sanitation, and other systems in Donetsk and Luhansk, which could inhibit healthy lifestyles and increase disease. Damaged infrastructure due to the conflict caused regular incidents with portable water [12-14, 16, 22, 25, 26, 34, 35, 37-39]. Overall, 18% of the population in the GCA had impaired access to sanitation, and over one quarter of those people had no access at all [14]. Another 4% of households in the GCA experienced cases of sickness due to water quality over the span of one year [24]. This situation might create additional risks and vulnerabilities for elderly people and persons with disabilities as they have limited mobility and need a third party to rely on to access a drinking water supply [14]. It is also reported that 24.8% of older people (of which 74.5% women) had limited or no access to safe drinking water [14]. Furthermore, 81% of households in the affected areas in the Donbas rely on water-based heating and thus, interruptions in water supply might be critical, especially for the winter season [16]. Lastly, the conflict impacted other public and social service systems, such as road infrastructure and the education system [14, 37, 39-41]. These impacts may have long-term impacts on health needs. Disease Prevalence Although reliable disease prevalence data is limited and controversial, insights from the desk review and GOU statistics suggest that there may be higher rates of chronic diseases, mental health disorders, and communicable diseases. In our population surveys, more respondents reported that they had a chronic disease in Donetsk and Luhansk (approximately 12%) than in Odessa and nationally (10% and 9%, respectively). These differences are statistically significant, other than the difference between Luhansk and Odessa. The results of the 2018 Health Index survey also showed more

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

people self-reported to have hypertension in Donetsk (23%) and Luhansk (27%) than in Odessa (12%) and Ukraine overall (21%), and more people self-reported to have diabetes in Donetsk (5%) than in Odessa (2%) and Ukraine overall (3%), while Luhansk had close to average (2%) [42]. Furthermore, some sources suggested that the majority of the elderly have at least one chronic disease and because of loneliness, isolation, and immobility, elderly people might also suffer from conflict-related mental health disorders [14, 16, 24]. An estimated 40% of the population in the GCA of Donetsk and Luhansk oblasts experienced some psychological trauma [24, 43]. However, our population surveys found similar rates of respondents who reported that they needed mental health (~11%). Concerning communicable diseases, the HIV prevalence is higher in Donetsk (approximately 494 cases per 100,000 people) than nationally (345)[44], but the TB prevalence rate is lower (57 versus 74 per 100,000 people)[45].

Figure 4: Chronic Disease Rate

Percent of Respondents who Self-Report Having a Chronic Disease

12.2% 11.5% 9.7% 9.3%

Donetsk Luhansk Odessa National

Health Care Utilization Despite potentially greater health needs due to population demographics and disease prevalence, indicators of preventative health care use are lower in Donetsk and Luhansk than in the rest of the country. After adjusting the population to account for IDPs and exclude people residing in the NGCA, the percentage of the population with signed declarations with PHC providers is 60% in Donetsk and 55% in Luhansk, which is significantly less than in Odessa (73%) and Ukraine overall (79%) [46]1. This data varies slightly from the 2019 Health Index survey data, which suggests that the rate of households with signed declarations is closer to the national average [47]. Although we do not know the reason for this difference, it is likely related to the Health Index methodology, which surveys by household using in-person interviews and does not mention any explicit sampling techniques to ensure the capture of IDPs. Similarly, our population surveys captured a higher rate (with approximately 88% of respondents in both Donetsk and Luhansk reporting that they signed a declaration with a PHC doctor), but this is likely due to the skewed survey sampling that did not capture vulnerable populations (such as elderly people and IDPs). Even with our survey’s skewed sample population, only 27% of respondents in Donetsk and 29% of respondents in Luhansk said that they interacted with their PHC doctor in the past two years. Although this may not be an issue in and of itself (due to a recent Cochran Review finding that regular general health checks may be unbeneficial and unnecessary [48]), it is indicative that preventative health care is underutilized. Further evidence of low preventative health care utilization is the low rate of flu vaccination reported among the adult survey respondents, which was approximately 9% in both oblasts. However, this low PHC utilization does not apply to children – according to our population surveys, 99% of the respondents with children had signed declarations for their children with PHC doctors and 88% in Donetsk and 92% in Luhansk were up-to-date with their children’s vaccinations. Similarly, gynecological

1 The number of signed declarations was retrieved from the NHSU Dashboard as of January 1, 2021, and the rate was calculated using our population figure calculated in Annex 3. 14

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

exam utilization is sufficient and comparable, with 68-75% of women getting an exam every two years or more often, according to our population surveys.

Figure 5: PHC Declaration Rate

% of Population with PHC Declaration*

100% 78.6% 80% 72.9% 59.7% 55.4% 60%

40%

20%

0% Donetsk Luhansk Odessa Ukraine

*Based on NHSU data retrieved January 1, 2021, with our adjusted population estimate.

Figure 6: Flu Vaccination Rate

In the past two years, have you received a flu vaccination?

I don't know No Yes

Donetsk 3.2% 88.2% 8.7%

Luhansk 4.5% 86.5% 9.0%

Odessa 3.8% 85.3% 10.8%

Some indicators for SHC utilization are also lower in Donetsk and Luhansk. Hospital admission rates are 13.7% in Donetsk and 14.3% in Luhansk, compared to 17.0% in Odessa and 20.1% in Ukraine overall [49]. Our population surveys did not validate this statistic, with approximately 40% of respondents in Donetsk and Luhansk reporting that they visited a SHC provider in the past two years, which is higher than the rate in Odessa (33%), but again, this reversal in terms of which oblasts have lower utilization is likely due to the sampling bias of our population surveys. Across regions, utilization of the health care system for mental health and flu/cold treatment is especially low. According to our population surveys, of the respondents who reported that they needed mental health care in the past two years, only 43% in Donetsk and 36% in Luhansk received the full care they needed. The rate was only slightly higher in Odessa (45%). For treatment of a respiratory infection, we asked respondents how they would seek care if they experienced symptoms, and only 33% in Donetsk and 35% in Luhansk would contact their PHC provider, with 47% in Donetsk and 50% in Luhansk either treating themselves at home or going directly to a pharmacy. Rates were similar in Odessa. The low utilization of physicians for flu/cold care is concerning because it likely results in increased use of antibiotics without prescriptions. Approximately 42% of respondents in Donetsk and 41% in Luhansk said that they take antibiotics “sometimes”, “often”, or “very often” without a prescription from a doctor. This aligns with data from the population survey that revealed that 60% of respondents took antibiotics in the past two years, when we know that much fewer sought care from a PHC or SHC provider (based on the answers to the previously mentioned questions). 15

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 7: Percent of Respondents Who Received Needed Mental Health Care

Did you receive the mental health care that you needed in the past two years?

No Partially Yes, fully

Donetsk 43.1% 33.3% 23.5%

Luhansk 35.7% 39.3% 25.0%

Odessa 44.8% 26.9% 28.4%

Figure 8: Care Seeking Behaviors When Sick

If you experience symptoms of the flu or respiratory infection (i.e., cough, fever, etc.), how do you seek care?

Donetsk Luhansk Odessa

35.0% 34.3% 32.8% 31.6% 31.9% 27.4% 22.9% 20.1% 15.2% 15.6% 10.5% 8.0% 6.1% 4.4% 4.1%

Contact my PHC provider Treat myself at home Go to the pharmacy Go to the hospital Contact a specialist (i.e. ENT doctor)

Figure 9: Antibiotic Use Without Prescription

How often do you take antibiotics without a prescription from a doctor?

1 - Very often 2 - Often 3 - Sometimes 4 - Rarely 5 - Never

Donetsk 6.1% 6.5% 29.7% 37.6% 20.1%

Luhansk 8.0% 9.2% 23.9% 39.3% 19.6%

Odessa 4.2% 4.4% 31.3% 36.3% 23.8%

Lastly, people who live in the GCA of Donetsk and Luhansk may also utilize health care in the NGCA, requiring them to cross the contact line. According to our population surveys, only 8% of respondents in Donetsk and 4% in Luhansk crossed the contact line into the NGCA for health care (including a range of SHC, PHC, mental health care, and other services). However, data from another USAID assessment showed that this rate may be higher, reporting that 14% of GCA residents in Donetsk and 5% in Luhansk crossed into the NGCA for health care [33]. This is concerning because the security situation remains tense near the contact line. Access to healthcare services at the Exit-Entry Check Points (EECPs) along the contact line is limited as medical assistance is provided by humanitarian actors and thus is only available during limited hours, with public ambulances up to 30 minutes away [16, 25, 26, 33, 36, 43]. Therefore, there are often reports of fatalities when people cross the EECPs in the eastern part of 16

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Ukraine [43]. Furthermore, the majority of people crossing the contact line are over the age of 60 and therefore, more vulnerable [26, 43].

Key Barriers to Health Care We identified and organized the key barriers to accessing health care in the GCA of Donetsk and Luhansk along the ten dimensions, grouped along five tiers, of the Access Framework. Although each dimension is interrelated, with some barriers affecting multiple tiers, we attempted to categorize our findings along this framework. For each dimension, we identified the most prominent barriers overall and specifically highlighted barriers that are unique to the GCA of Donetsk and Luhansk. These barriers are summarized in the figure below. The COVID-19 pandemic exacerbated these barriers, making the health system more fragile and inaccessible for patients; however, COVID-19 is not a focus of this assessment and therefore, pandemic-specific challenges are not broken out separately.

Figure 10: Summary of Key Barriers Along the Access Framework

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Tier 1: Approachability & Ability to Perceive Approachability Our surveys found that health care providers in the GCA of Donetsk and Luhansk provide inadequate information and follow-up to patients. According to the population surveys, approximately 41% of people in the GCA of Donetsk and 42% of people in the GCA of Luhansk reported that their PHC doctor did not provide enough information about services provided. With only 28% reporting this in Odessa, this is a statistically significant difference suggesting that patients in Donetsk and Luhansk face greater barriers in obtaining information from their PHC provider. Further emphasizing this barrier, 61% of people in Luhansk and 47% of people in Donetsk reported that their PHC physician did not provide them with any information about key disease prevention topics (i.e., vaccinations; nutrition; tobacco, alcohol, and drug use; exercise; and cancer screening). With a similar rate of information- provision in Odessa, this seems to be a problem across Ukraine. However, the information barrier is likely even greater in the GCA of Donetsk and Luhansk due to the lack of follow-up from PHC providers, with 59% of people in Donetsk and 60% of people in Luhansk reporting that their PHC doctor did not follow up with them after their appointment. Compared to 45% in Odessa, this is a statistically significant difference that suggests that although PHC provider information-sharing and follow-up is a problem across Ukraine, the barrier is even greater in the GCA of Donetsk and Luhansk. This finding is supported by peripheral studies of health care in the GCA [16, 19, 50]. For example, parents of children who were injured by mines/explosive remnants of war (ERW) did not receive complete information about the health conditions of their children or available services, and therefore, many caregivers have limited awareness and knowledge about child mine/ERW survivors and their needs [16].

Figure 11: Rate of Information Provided by PHC Provider

Did your PHC doctor provide you with information about the services provided and answer all of your questions?

1 - No information provided and no Donetsk 5.1% 12.5% 23.6% 27.6% 29.3% 2.0% questions answered 2 - Very limited information provided 41% 3 - Some information provided, but not Luhansk 7.4% 17.9% 16.7% 22.2% 34.6% 1.2% enough

4 - Information provided and some 42% questions answered 5 - All necessary information provided Odessa 3.0% 11.7% 13.3% 31.3% 38.3% 2.3% and all questions answered

I do not remember 28%

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 12: Type of Information Provided by PHC Provider

Did the PHC doctor provide you with information about any of the following topics? 60.5% Donetsk Luhansk Odessa 47.1% 50.0%

31.0% 23.3% 19.3% 14.8% 15.8% 15.7% 13.6% 12.5% 12.0% 11.1% 11.1% 7.4% 7.4% 6.2% 5.7% 5.7% 3.7% 4.0% 3.7% 2.5% 2.7%

None of the Vaccinations Nutrition / Smoking / Exercise Alcohol Cancer Illicit drug use above weight tobacco use consumption screening / management Disease screening programs

Figure 13: PHC Provider Follow Up

Did your PHC doctor follow up with you after the appointment?

I don't remember No Yes

Odessa 6.7% 44.7% 48.7%

Luhansk 4.9% 59.9% 35.2%

Donetsk 5.4% 58.9% 35.7%

Furthermore, although not unique to Donetsk and Luhansk, HCFs have inadequate signage, making care less approachable, especially for vulnerable populations. According to our population surveys, of the HCFs with “high-confidence” data reported by survey respondents, over 64% in Donetsk and 65% in Luhansk did not have signs posted about the services offered at the HCF, over 38% in Donetsk and 63% in Luhansk did not have signs indicating hours of operation, and over 78% in Donetsk and 79% in Luhansk did not have signs directing patients to the main entrance. Less than 5% of the visited HCFs in both Donetsk and Luhansk had all three signs. This finding is also supported by a USAID assessment which found that over half of the HCFs did not have the name of the HCF visible and over three quarters did not have information posted on the hours of operation [19]. This issue can be a greater barrier for people with disabilities [19, 31, 35, 41]. For example, many HCFs lacked braille, suitable font sizes on signage, and adequate lighting, making it difficult for people with vision impairments to understand posted information [19].

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 14: HCFs with Signage on Services

Does the HCF have a sign with information on services offered?

Yes No

Donetsk 35.65% 64.3%

Luhansk 34.21% 65.8%

Odessa 47.86% 52.1%

Figure 15: HCFs with Signage on Hours

Does the HCF have the hours of operation posted?

Yes No

Donetsk 61.74% 38.3%

Luhansk 36.84% 63.2%

Odessa 60.68% 39.3%

Figure 16: HCFs with Navigation Signage

Does the HCF have signage directing patients to the main entrance?

Yes No

Donetsk 21.74% 78.3%

Luhansk 15.79% 84.2%

Odessa 20.51% 79.5%

Ability to Perceive Like in other areas of Ukraine, health literacy is low in the GCA of Donetsk and Luhansk, resulting in patients’ poor perception of when they need care. One proxy measure for health literacy is vaccine hesitancy. According to our population surveys, 24% of people in Donetsk and 16% of people in Luhansk have negative attitudes towards vaccinations. Further, very few adults (9% in Donetsk and 9% in Luhansk) received the flu vaccination in the past two years and most (77% in Donetsk and 71% in Luhansk) cited a lack of knowledge or belief in vaccines as the reason, as shown in Figure 18 below. These rates are similar in Odessa, suggesting that vaccine hesitancy is not unique to Donetsk and Luhansk. This is also confirmed by the 2019 Health Index survey [47], which found that people in Donetsk and Luhansk have similar attitudes towards vaccines as other oblasts, with a mean value of 4.1 in Donetsk and 4.4 in Luhansk, compared to 4.1 in Ukraine as a whole (on a scale from 1 to 5). We suspect that the discrepancy in measurements of attitudes towards vaccinations is due to variances in how the question was asked on the Health Index survey versus our population surveys. Further hindering health literacy related to vaccination, two articles described Russian trolls masquerading as legitimate online users who promoted misconceptions towards vaccinations [23, 51].

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Low health literacy is further evidenced by people’s rationale for not seeking health care. According to our population surveys, 73% of people in Donetsk and 71% of people in Luhansk did not interact with a PHC provider over the past two years, and of those people, 88% in Donetsk and 91% in Luhansk cited a lack of need as the primary reason for not visiting the PHC doctor. These rates (which are similar in Odessa as well) demonstrate that people do not know or believe in the value of PHC for routine preventative health care. This is further substantiated by the 2019 Health Index survey [47], which asked people why they did not seek care from a doctor and found that 39% of respondents in Donetsk and 54% of respondents in Luhansk expected their disease/injury to subside on its own [42, 47]. There were similar findings for mental health, which was reported as an often-avoided topic because many people in Ukraine shared a perception “of their psychological problem as something not too serious” [29]. Similarly, the COVID-19 pandemic has also not been seen as a serious public hazard in Donetsk and Luhansk; in one study almost half (48%) of respondents reported COVID-19 to be "not important at all" [15]. Meanwhile, the 2018 and 2019 Health Index survey also found that people had insufficient knowledge of critical disease symptoms (such as TB and stroke). For instance, respondents could only name 2.2 out of 5 stroke symptoms, on average throughout all oblasts (with Donetsk slightly higher at 2.3 and no data available for Luhansk) [47]. Poor health literacy might lead to increased levels of self-medication and dangerous health consequences. For example, doctors at the checkpoints reported a high degree of misusage of nitroglycerin pills by patients, which often worsens the patient’s condition [43]. This reiterates the finding that patients’ ability to perceive their health care needs, debilitated by insufficient health literacy, is a major barrier to accessing health care.

Figure 17: Attitude Towards Vaccinations

In general, what is your attitude towards vaccinations?

Very positive Positive Neutral Negative Very negative

Donetsk 5.9% 30.4% 40.2% 15.9% 7.6%

24%

Luhansk 8.6% 33.1% 42.1% 10.5% 5.6%

16%

Odessa 7.7% 31.7% 38.6% 13.1% 8.9%

22%

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 18: Reasons for Not Receiving Flu Vaccination

Why have you not received a flu vaccination in the past two years?

Donetsk Luhansk Odessa

4.1% Other 6.1% 6.2%

6.0% Other: I do not agree that I need a flu vaccination * 5.7% 8.0%

6.2% There is no vaccine available 9.1% 4.9%

10.3% I don’t have enough money 10.9% 10.7%

30.7% I don’t believe in vaccinations * 21.3% 27.7%

37.6% I didn’t know that I needed a flu vaccination * 43.5% 37.9%

Note: This graph only includes answers that received more than 5% of responses. Other answer choices that respondents indicated include: “COVID-19 is preventing me from going to get vaccinated”, “The doctor is not convenient or easy to get to”, “Other: I do not trust the flu vaccine”*, “Other: I am/was not sick”, “Other: I'm not eligible due to pregnancy or other health/medical status”, “Other: My doctor didn't offer it”, “My doctor is against vaccination”, “Other: I didn't have time”, “Other: I'm afraid of complications or side effects”, and “Other: I thought I didn't need it annually - only once”*.

*The asterisks highlights answer choices that indicate a lack of knowledge and/or belief in vaccines as the main barrier.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 19: Reasons for Not Visiting PHC Provider

What is the primary reason(s) for not visiting your PHC doctor during the past two years?

Odessa Luhansk Donetsk 5.2% I went to a specialized health care provider instead 3.0% 5.4% 5.2% I did not have enough money to visit the PHC doctor 6.0% 3.6% 9.6% I used pharamacists/pharmacy advice instead 4.5% 1.8% 5.2% I did not have time to visit the doctor 4.5% 9.8% I used the Internet and/or family/friends advice 8.1% 4.5% instead 8.9% 11.9% Other reason 10.4% 11.6% I did not need to see the PHC doctor and my PHC 85.9% 91.0% doctor did not ask to see me 88.4%

Note: This graph only includes answers that received more than 5% of responses. Other answer choices that respondents indicated include: “My PHC doctor did not have availability to see me at the facility”, “Other: I treated myself”, “Other: I do not trust my doctor”, “It is too difficult for me to reach the PHC doctor”, and “My PHC doctor refused to visit me at home”.

Although trust does not appear to be a widespread barrier to accessing health care in Eastern Ukraine, many people in Ukraine do not trust health care providers and this impacts access indirectly. According to the 2019 Health Index survey [47], 17.5% of Ukrainians do not trust heath care workers, and this is slightly lower in Donetsk (13.2%) and Luhansk (6%). Our population surveys found distrust to be greater, with 21% of respondents in Donetsk and 26% of respondents in Luhansk either partially or completely distrusting their PHC doctor, 22% of respondents in Donetsk and 28% of respondents in Luhansk either partially or completely distrusting doctors at hospitals, and 22% of respondents in Donetsk and 23% of respondents in Luhansk either partially or completely distrusting the ambulance system. These rates are all comparable for Odessa, suggesting that distrust is not a unique issue for Donetsk or Luhansk. Additionally, the issue does not appear to be unique to municipal HCFs, as there are similar rates of distrust (22-25%) for private HCFs and most respondents (59-67%) trust private and public facilities equally. Despite an estimated one quarter of the population harboring distrust in the health care system, this does not appear to be a widespread barrier for accessing health care. Of the survey respondents who have not signed declarations with a PHC doctor, only 6% in Donetsk and 8% in Luhansk cited lack of trust as a reason. Similarly, of respondents who had not accessed SHC in the past two years, only 2% in Donetsk and 2% in Luhansk cited lack of trust as a reason. However, a lack of trust exacerbates other barriers, leading to lower health literacy, lower health reform literacy, lower adherence of physician orders, and lower satisfaction/perception of quality, which could indirectly result in worse access.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 20: Trust in PHC Providers

How much do you trust PHC doctors on a scale from 1 (complete distrust) to 5 (complete trust)?

1 - Complete distrust 2 - Partial distrust 3 - Neither trust nor distrust 4 - Partial trust 5 - Complete trust

Donetsk 6.1% 15.2% 19.5% 49.0% 10.1%

Luhansk 7.1% 19.2% 17.7% 46.2% 9.8%

Odessa 5.9% 16.6% 16.9% 47.4% 13.2%

Figure 21: Trust in SHC Providers

How much do you trust doctors at the hospital on a scale from 1 (complete distrust) to 5 (complete trust)?

1 - Complete distrust 2 - Partial distrust 3 - Neither trust nor distrust 4 - Partial trust 5 - Complete trust

Donetsk 5.2% 16.9% 19.3% 48.8% 9.8%

Luhansk 8.1% 20.2% 19.0% 45.2% 7.7%

Odessa 6.8% 19.2% 16.3% 47.7% 10.0%

Figure 22: Trust in Ambulance System

How much do you trust the ambulance system on a scale from 1 (complete distrust) to 5 (complete trust)?

1 - Complete distrust 2 - Partial distrust 3 - Neither trust nor distrust 4 - Partial trust 5 - Complete trust

Donetsk 6.4% 15.0% 19.6% 49.4% 9.5%

Luhansk 4.4% 19.0% 19.4% 48.8% 8.5%

Odessa 8.1% 15.7% 18.2% 48.5% 9.5%

Figure 23: Trust in Private Providers

How much do you trust doctors at private health facilities on a scale from 1 (complete distrust) to 5 (complete trust)? 1 - Complete distrust 2 - Partial distrust 3 - Neither trust nor distrust 4 - Partial trust 5 - Complete trust

Donetsk 3.4% 18.7% 20.9% 47.2% 9.8%

Luhansk 4.0% 21.4% 21.0% 45.6% 8.1%

Odessa 4.9% 17.9% 19.2% 49.9% 8.1%

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 24: Trust in Public Versus Private Providers

Calculated difference in trust between public and private (more, less, or equal)

Trust Equally Trust Private More Trust Public More

Donetsk 66.6% 16.6% 16.9%

Luhansk 58.9% 21.8% 19.4%

Odessa 66.7% 15.7% 17.6%

Figure 25: Reasons for Not Signing Declaration

Why have you not signed a declaration with a PHC doctor?

Donetsk Luhansk Odessa

32.8%32.4% 32.4%

24.5% 23.4% 20.3% 20.3% 18.8% 18.9% 17.2% 14.1% 10.8% 10.9% 8.1%8.3% 8.1% 6.3% 6.3% 4.7% 1.6%

I did not know that I haven't had the I wanted to sign a I do not need a I do not trust PHC Other reason I do not have I needed to have a time to go to the declaration, but I PHC doctor doctors enough money to declaration with a PHC doctor to sign do not have a because I am a visit the PHC PHC doctor up doctor nearby healthy person doctor whom I trust

Note: This graph only includes answers that received more than 5% of responses. Other answer choices that respondents indicated include: “I do not trust electronic medical systems; my health data is not sufficiently protected”, “I wanted to sign a declaration, but all the doctors whom I trust refused me”, “It is too difficult for me to reach the PHC doctor nearby”, and “I do not want to and will never have a declaration with a PHC doctor”.

Tier 2: Acceptability & Ability to Seek Acceptability Like in other regions of Ukraine, the bad attitude of health care workers makes health care less acceptable in the GCA of Donetsk and Luhansk, but primarily only for vulnerable populations. According to the 2019 Health Index survey, 6% of Ukrainians (7.6% in Donetsk and 3.3% in Luhansk) cite the bad attitude of health care personnel as a reason for not seeking care [47]. Therefore, this does not appear to be a widespread barrier to care. However, people with mental health care needs reported negative experiences communicating with specialists in the field [29], and people with disabilities reported disrespectful treatment by health care staff [19]. This indicates that the acceptability of health care workers’ attitudes may be a greater barrier for vulnerable populations. Partners noted that bad attitudes of health workers and inadequate counselling/information-sharing may be due to health workers’ perceived poor financial motivation.

Unique to Donetsk and Luhansk, HCFs are also less acceptable due to safety concerns. Although our population survey respondents found that only 1% of HCFs visited in Donetsk and 5% of HCFs visited in Luhansk looked “unsafe” based on external appearance, our survey respondents were not able to visit and verify many HCFs near the contact line, and other studies suggest that safety may be a concern at HCFs in the GCA of Donetsk and Luhansk near the contact line. For instance, a 2019 study 25

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

found that two-thirds of HCFs near the contact line were damaged, causing interviewees from the area to refer to a local hospital as “one of the most dangerous places” [34]. Numerous reports assessed damages of regular shelling in the regions, including physical damage to education and healthcare buildings, infrastructure, and roads [12, 16, 22, 25, 26, 34, 35, 37, 38, 40, 41, 52-54]. Consequently, these events decreased physical accessibility of HCFs (especially for people with limited mobility) as well as hampered their functionality, leading to some renovations [25, 37, 41]. Therefore, although safety does not appear to be a widespread barrier in the Eastern oblasts, it is worth noting as a potential unique challenge in certain areas of the GCA of Donetsk and Luhansk. While there were some renovations conducted [25, 37, 41], comprehensive monitoring must be conducted to fully understand the extent of damages and renovations for each HCF.

Figure 26: HCF Conditions

Condition of HCFs Visited by Survey Respondents

Dilapidated and unsafe Functional but not inviting Well-maintained, clean, and welcoming

Donetsk 0.9% 36.5% 62.6%

Luhansk 5.3% 26.3% 68.4%

Odessa 1.7% 30.8% 67.5%

Ability to Seek Health reform literacy and general knowledge of how to access health care is low throughout Ukraine, impeding patients’ ability to seek care. As a proxy measure of health reform literacy, our population surveys asked if respondents were aware of which PHC and SHC services should be provided for free. Approximately 50% of respondents claimed to have an awareness of “somewhat” or greater (as seen in Figures 27 and 28), with the other half of respondents reporting to be “barely aware” or “completely unaware”. Furthermore, when asked to verify their awareness by selecting the statement that best reflects the cost of PHC and SHC, even fewer respondents demonstrated knowledge of health reforms, with only 24% of respondents in Donetsk and 20% of respondents in Luhansk selecting the correct answer regarding PHC costs and only 6% of respondents in Donetsk and 4% of respondents in Luhansk selecting the correct answers regarding SHC costs. This lack of understanding about health reform (and, specifically, the gatekeeping role of PHC) is further evidenced by the source of referral for SHC visits – approximately 50% of respondents’ SHC visits were self-referrals. For all of these indicators, the rates in Odessa and nation-wide were comparable, indicating that this low level of health reform literacy is not unique to Luhansk and Donetsk but is a widespread issue. However, this low health reform literacy may result in a greater barrier to health care in Donetsk and Luhansk, as suggested by the survey data on reasons why respondents did not have declarations with a PHC doctor. In Donetsk and Luhansk, approximately 32-33% of respondents who did not have a declaration claimed that their primary reason was: “I did not know that I needed to have a declaration with a PHC doctor” (as seen in Figure 25 above). This impeded ability to seek health care was further shown by respondents’ health care seeking behaviors if they experienced flu symptoms – only 33-35% of respondents in Donetsk and Luhansk said that they would contact a PHC provider. Low awareness of how to access health care is especially pronounced for mental health care. One study estimates that up to 83% of the people in the GCA do not know about psychosocial help centers in their area [16]. Another study found that only 29% of households were aware of available mental health care services and 17% knew about post-trauma rehabilitation services [55]. This low health reform literacy is not surprising given the above barrier under Tier 1 of providers giving inadequate information and follow up to patients. As partners noted in consultations, it may also be further 26

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

expounded by the slow implementation of health reforms in the region, many health care workers’ lack of support for health reforms, and health care workers’ poor motivation to provide thorough counselling on services due to dissatisfaction with salaries.

Figure 27: PHC Reform Awareness

How much are you aware of which PHC services should be provided for free by the government? 1 - Completely unaware 2 - Barely aware 3 - Somewhat aware 4 - Almost completely aware 5 - Completely aware

Donetsk 23.0% 26.4% 33.2% 11.0% 6.3%

Luhansk 27.4% 21.8% 36.1% 8.3% 6.4%

Odessa 25.4% 21.4% 34.0% 10.8% 8.5%

Figure 28: SHC Reform Awareness

How much are you aware of which specialized health care services should be provided for free by the government? 1 - Completely unaware 2 - Barely aware 3 - Somewhat aware 4 - Almost completely aware 5 - Completely aware

Donetsk 23.0% 27.6% 36.5% 8.9% 4.0%

Luhansk 24.6% 25.4% 39.5% 5.6% 4.8%

Odessa 26.6% 23.3% 35.8% 10.0% 4.3%

Figure 29: Knowledge Test of PHC Costs

Based on your knowledge, which of the following statements best reflects the cost of primary care to patients?

Donetsk Luhansk Odessa National 45.6% 43.6%44.7% 38.3%

23.5% 23.4% 19.5% 21.1%

12.4% 12.7% 11.3% 11.8% 10.4% 11.5% 10.6% 11.7% 11.3% 7.9% 9.3% 6.8% 4.1% 2.7% 3.7%2.1%

Primary care is Primary care is free Hard to say Primary care is free Patients have to pay Patients have to unconditionally free for the patients if they for the patients if theyfor some components absorb the full cost of of charge for any have signed a are eligible to social, of primary care such primary care patient declaration with a age-related or similar as cost of vaccines or doctor contracted by benefits tests the NHSU

Correct Answer

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 30: Knowledge Test of SHC Costs

Based on your knowledge, are patients eligible to get specialized care for free after the health care reform?

53.1% Donetsk Luhansk Odessa National 45.7% 42.7% 39.3%

23.0% 24.7% 21.2% 22.8% 21.0% 17.7% 16.6% 17.3% 18.6% 17.5% 16.0% 15.4% 14.9% 11.0% 8.9% 7.0%

Yes, if they have a referral Yes, if they are in a No, they have to pay for Hard to say Yes, all specialized care in from a primary care condition that endangers any type of specialized Ukraine is free for doctor and chose a facility their life or health or the care in any case patients that has a contract with life or health of others the NHSU for the provision of the type of care they seek

Correct Answers

Figure 31: Accuracy Rate in SHC Knowledge Test

Percent of respondents who chose both correct answers in the knowledge test of eligibility of free specialized health care

Correct Incorrect

Donetsk 6.1% 93.9%

Luhansk 4.0% 96.0%

Odessa 5.7% 94.3%

National 8.7% 91.3%

Figure 32: SHC Referral Sources

Who referred you to the specialized health care provider?

Donetsk Luhansk Odessa 50.4% 50.5% 52.5%

28.0% 27.3% 20.5% 18.0% 16.8%18.2% 3.2% 2.0% 4.1% 1.6% 2.0% 2.5% 2.5%

Self-referral PHC doctor Emergency care Follow-up Other Other: Maternity doctor hospitalization doctor

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Tier 3: Availability and Accommodation & Ability to Reach Availability and Accommodation Due to the ongoing conflict and subsequent migration of health workers, Donetsk and Luhansk suffer from health workforce shortages across roles. Publicly-available GOU data shows this shortage clearly – with Donetsk and Luhansk hosting 1.94 and 1.84 doctors per 1,000 people, respectively, compared to 2.99 and 3.07 doctors per 1,000 people in Odessa and nationally, respectively [56]. For comparison, Organisation for Economic Co-operation and Development (OECD) countries have between 2 and 5 doctors per 1,000 people, approximately, with 2.4 in Poland, 3.0 in the United Kingdom, and 3.5 in Estonia [57]. Donetsk and Luhansk also have fewer PHC physicians than in other regions (approximately 0.4 per 1,000 people compared to 0.6 in Odessa and Ukraine, on average), which is also less than international benchmarks (with 0.75 general practitioners per 1,000 people in the United Kingdom and 0.73 in Estonia) [58]. This suggests that there is a PHC doctor shortage throughout Ukraine, but it appears to worse in Donetsk and Luhansk than Odessa. Among the PHC physicians in Eastern Ukraine, more are overburdened with patients than in other regions, as seen by the average number of declarations per PHC doctor (which is 1,489 in Donetsk and 1,459 in Luhansk, compared to 1,264 in Odessa and 1,319 in Ukraine overall) [21, 59]. In the “grey zone”, the number of signed declarations per PHC doctor is even higher than in the rest of the oblast (1,632 patients per family doctor on average) [60]. Although the NHSU’s maximum ceiling for the number of patients per PHC doctor is 1,800 [61], the average should be below this ceiling, and furthermore, there is high rate of patients in Donetsk and Luhansk that do not have declarations and therefore are not accounted for by the NHSU. For SHC, the difference is even greater, with only 1.35 specialists in Donetsk and 1.27 specialists in Luhansk per 1,000 people, compared to 2.20 in Odessa and 2.25 nationally per 1,000 people [56]. Similarly, there are not as many nurses – only 3.62 in Donetsk and 3.51 in Luhansk per 1,000 people, compared to 4.03 in Odessa and 4.67 nationally per 1,000 people as well as 5.1 in Poland, 6.3 in Estonia, and 7.8 in the United Kingdom [62].

This shortage of health care personnel is due to the fact that 70% of the health workforce left the area due to security concerns and professional burnout [54, 63]. Furthermore, the problem will likely get worse in the coming years as the current health workforce in Eastern Ukraine enters retirement and as more health workers get burnt out due to their juggling of multiple positions (which is the highest in Donetsk and Luhansk out of all oblasts) [25, 40, 64]. For instance, in 2019, 31% of doctors in Donetsk and 32% of doctors in Luhansk were of retirement age (compared to 26% in Odessa and 25% nationally) [65]. Partners noted that the older age of physicians is also a problem because older doctors are less open to change and less willing to adopt new protocols/practices to align with updated standards of care. Despite these older physicians’ unwillingness to meet standards of care, HCFs must keep them employed because of the shortage that leaves managers with no alternative choice.

Interestingly, the health workforce shortage did not appear to be a significant and unique barrier to care according to our population surveys. For instance, of the respondents who have not signed a declaration with a PHC provider, only 14% in Donetsk and 19% in Luhansk cited the lack of a trusted doctor nearby as a reason why (compared to 25% in Odessa). However, this may be due to the survey limitations, which bias the results towards people who have more access to care than others, as well as patients’ limited ability to perceive staff shortages and their subsequent impact on care. One notable insight regards mental health care. Among respondents who did not receive fully the mental health care that they needed, the second highest reason for not receiving care was the lack of a mental health care provider nearby – with 28% of respondents in Donetsk and 24% of respondents in Luhansk choosing this answer. This is aligned with a 2018 study assessing mental health in Donetsk and Luhansk oblasts, which found that the shortage of mental health specialists, especially in rural areas and small towns, to be one of the key barriers to utilization of these services. [29].

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 33: Health Workforce Availability

Number of Health Workers per 1,000 People

7.0 6.4

6.0

5.0 4.7 4.0 4.0 3.6 3.5 3.0 3.1 3.0 3.0 2.2 2.2 1.9 1.8 2.0 # per 1,000 populationper1,000 # 1.3 1.3 0.74 1.0 0.6 0.6 0.4 0.4 0.0 Total Doctors PHC Doctors Specialists* Nurses

Donetsk Luhansk Odessa Ukraine International Benchmark**

*Specialists includes 46 specialties in Ukraine, including rheumatologists, cardiologists, gastroenterologists, nephrologists, endocrinologists, surgeons, orthopedic traumatologists, urologists, anesthesiologists, obstetricians and gynecologists, pediatricians, ophthalmologists, neurologists, psychiatrists, psychologists, laboratory doctors, radiologists, and more.

**For the international benchmark, we calculated the average of the United Kingdom, Estonia, and Poland based on OECD data, except for the PHC doctor rate, which only included data from the United Kingdom and Estonia due to missing data on Poland from the OECD.

Although there appear to be a sufficient number of hospital beds in the region, the availability of SHC in Donetsk and Luhansk is further limited by shortages in specialized beds and equipment. An analysis of data from the MOH shows that the overall availability of hospital beds in Luhansk is similar to rest of the country (with 6.84 beds in Luhansk versus 6.40 in Odessa and 6.87 in Ukraine per 1,000 people), but there are fewer in Donetsk (5.25 per 1,000 people) [49]. Regardless, this rate of hospital beds is aligned or higher than international benchmarks (which range from 2.5 in the United Kingdom to 6.5 in Poland) [66]. However, when compared by specialty, there appear to be shortages in beds for certain specialized care services, such as oncology (for which Donetsk has 0.13 beds and Luhansk has 0.11 beds, compared to 0.18 in Odessa and 0.20 in Ukraine per 1,000 people) and psychiatry (for which Donetsk has 0.40 beds compared to 0.91 in Ukraine per 1,000 people) [21, 59]. This may contribute to the finding of one study, which reported that physicians working at oblast-level, rayon/city, and PHC facilities in Donetsk and Luhansk reported not having enough beds to admit patients [67].

There are also fewer diagnostic imaging machines in Donetsk and Luhansk compared to Odessa and Ukraine nationally, with shortfalls in fluorographs, angiographs, computed tomography (CT) scanners (in Luhansk only), magnetic resonance tomography (MRT) machines, and ultrasounds (as seen in the Figure 36 below). In total, at public HCFs, there are 143 diagnostic imaging machines in Donetsk and 162 in Luhansk per 1 million people, compared to over 180 in Odessa and Ukraine [68]. The only anomaly in the specialized equipment shortage is among CT scanners in Donetsk, where there is more than the national average as well as international benchmarks [69], likely due to poorly-planned procurements. It is unclear if these CT scanners are being fully utilized or if HCFs even have the adequately trained diagnostic technicians to utilize the machines properly.

Other than CT scanners in Donetsk, the shortage of specialized, expensive medical equipment may be due to the fact that most SHC facilities in the oblast are now located in the NGCA, which increases pressure on PHC and SHC facilities in the GCA [33]. For example, the region’s cancer center is now part 30

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

of the NGCA, leaving Donetsk and Luhansk without access to modern oncology equipment – including linear accelerators (devices to provide targeted radiation therapy), which Kramatorsk plans to install this year [70]. There is also a lack of specialized equipment for people with disabilities, including wheelchairs, adapted bathtubs, or strollers, which one study found to be the second most likely physical barrier to accessing healthcare services among people with disabilities, including at HCFs that had been upgraded prior to the assessment, implying the need not only for physically upgrading facilities but also for ensuring minimum standards with equipment [19, 31, 35]. Literature also highlights the lack of equipment to provide the full cycle of the rehabilitation to mine/ERW survivors and other conflict-related trauma, especially for children (including ophthalmology and neurology) [35, 50]. Additionally, the desk review findings suggest that SHC facilities lack necessary computer hardware, high-tech diagnostic medical equipment, laboratory equipment and timely supplies of reagents, as well as personal protective equipment, especially among the HCFs located close to the contact line [12, 25, 35, 37, 40, 41, 71, 72].

The population survey responses suggest that these shortages in beds/equipment (as well as personnel) may result in unavailable SHC services. Approximately 54% of respondents in Donetsk and Luhansk said that “some” or fewer of the SHC services that they needed/would need were provided at their nearest hospital. This is greater than the rate in Odessa (45%), and the differences are statistically significant.

Figure 34: Hospital Bed Availability (Total)

Total Hospital Beds per 1,000 People

8.00 6.84 6.87 7.00 6.40 6.00 5.25 5.00 4.53 4.00 3.00 2.00 1.00 0.00

# of Beds per 1,000 population1,000perBeds of # Donetsk Luhansk Odessa Ukraine International Benchmark*

**For the international benchmark, we calculated the average of the United Kingdom, Estonia, and Poland based on OECD data.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 35: Hospital Bed Availability by Specialty

Number of Hospital Beds per 1,000 People by Specialty

1.00

0.90

0.80

0.70

0.60

0.50

0.40

0.30

0.20

0.10

0.00

Donetsk Luhansk Odessa Ukraine

Figure 36: Specialized Equipment Availability

Number of Specialized Equipment per 1,000,000 People 120

102.7 100 97.1

80.5 80

62.8 60 55.9

40 33.7 32 31.5 # per 1,000,000 population per1,000,000 # 25.7 21.9 20.8 18.5 20 10.3 11.2 11.4 6.7 6.2 2.9 6.4 5.8 0.9 2.2 0.9 1.1 1.5 0.8 0 0.0 Flourographs Angiographs Mammographs CT Scanners MRT Machines Ultrasounds

Donetsk Luhansk Odessa Ukraine International Benchmark*

**For the international benchmark, we calculated the average of Estonia, and Poland based on OECD data.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 37: Completeness of Care at SHC Facilities

Are all the specialized health care services you need (or would need in the future) provided at the nearest hospital?

1 - No health care services are provided at Donetsk 12.0% 8.0% 33.7% 26.4% 9.5% 10.4% the nearest hospital 2 - Only one service is provided at the 54% nearest hospital 3 - Some of the services I need are provided at the nearest hospital Luhansk 13.3% 6.9% 34.3% 28.2% 10.1% 7.3% 4 - Most of the services I need are provided at the nearest hospital 54% 5 - All of the services I need are provided at the nearest hospital Odessa 13.3% 6.0% 26.0% 26.3% 11.1% 17.3% I don't know

45%

The distribution of HCFs is another potential barrier, with Donetsk and Luhansk having fewer PHC facilities, absent or difficult-to-reach SHC facilities, and limited private HCFs. According to the NHSU data, the number of PHC facilities per 100,000 people is 1.89 in Donetsk and 3.02 in Luhansk, lower than the number in Odessa (5.73) and Ukraine overall (4.42) [10, 21, 46, 59]. Additionally, the rate is lower according to area as well: the GCA of Donetsk has 2.5 PHC facilities per 1,000 square kilometers and the GCA of Luhansk has 1.5 PHC facilities per 1,000 square kilometers [10, 21, 46, 59]. This is much less than the rate is Odessa, which is 4.14 PHC facilities per 1,000 square kilometers [10, 21, 46, 59]. This data suggests that PHC facilities may be more crowded and more difficult to access geographically in Donetsk and Luhansk. Based on findings from the desk review, this barrier is likely relevant for SHC facilities as well, since many of the original SHC facilities in the oblast are now located in the NGCA [33]. Availability is worse in rural areas, where lack of maintenance led to infrastructure impairments at the HCFs [26, 35] and the conflict cut off referral pathways to larger, oblast-level SHC facilities in urban areas [16, 33, 34]. Thus, people living in rural areas reported the difficulties in physically accessing health care [16, 33, 34, 36, 73]. Disruption in access to large urban centers located in the NGGA is also a challenge for the urban population, especially those living close to the contact line, with one assessment reporting that up to 51% of the urban population living within 20 km of the contact line faced difficulties in accessing health care [16]. Partners in the region confirmed this finding, noting the absence of tertiary care hospitals, absence of communication between primary and specialized levels of care, and poor infrastructure at the HCFs that did exist. Furthermore, partners noted the limited number of private HCFs. This is confirmed by NSHU data, which shows that approximately 22-23% of PHC facilities in Donetsk and Luhansk are private compared to over 50% in Odessa and 35% in Ukraine overall [74]. This impacts the availability of care while also hampering competition and patient choice, which are critical principles of the health reform.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 38: Availability of PHC Facilities

Number of PHC Facilities per Population and Area

7 5.73 6 5 4.42 4.14 4 3.02 3 2.49 1.89 2 1.48 1

# per 100,000 population per100,000 # 0 PHC facilities per 100,000 population PHC facilities per 1,000 sqkm area

Donetsk Luhansk Odessa Ukraine

People with disabilities in the GCA of Donetsk and Luhansk face even greater barriers due to the limited accommodations for disabilities. Through the HCF validation survey, respondents checked if HCFs had any of the following accommodations for people with disabilities: a ramp, a sign directing the visitor to an accessible entrance, and/or a doorbell to request assistance. These accommodations meet the minimum requirement for HCFs to be deemed accessible for people with disabilities, as required by the NHSU for contracting [75]. Among the HCFs that respondents visited and reported “high confidence” data, only 75% in Donetsk and 63% in Luhansk had at least one of the accommodations for people with disabilities, which is slightly lower than in Odessa (82%), though this difference is only statistically significant between Odessa and Luhansk. Additionally, our desk review found that existing policy guidelines on inclusive construction practices were rarely translated into the physical construction of service facilities in Donetsk and Luhansk oblasts [19], making HCFs inaccessible for people with disabilities [19, 31, 35, 41]. A variety of problems were identified: lack of entrance ramps, narrow corridors, absent or not functioning lift, darkness in the facility, lack of information (including lack of braille or suitable font), lack of toilets for people with disabilities, and more [19, 31, 35, 41]. Long waiting lines were the most commonly reported physical barrier for people with disabilities to access service providers, including health care services in Donetsk and Luhansk oblasts, causing people with disabilities to stand for substantial time periods and rely on caregivers to assist them in facilities [19]. However, recent data collected by the NHSU and displayed on the new NHSU Accessibility Dashboard reports that 91% of HCFs in Donetsk and 96% in Luhansk are “accessible” (compared to 88% in Odessa and 89% in Ukraine overall), as reported by HCFs and verified by specialists [76]. The difference between our survey findings, the literature review, and the NHSU dashboard may be due to the fact that accommodations (i.e. ramps) are not easy to find for a typical patient, so although they exist and can be verified if the HCF directs the user to the accommodation, day-to-day patients may not utilize them. This may indicate that HCFs do not have the proper external navigation to their accommodations.

Figure 39: Disability Accommodations at HCFs

Percent of HCFs with At Least 1 Accessibility Feature for People with Disabilities (Ramp, Doorbell, or Sign to Accessible Entrance)

Yes No

Donetsk 75.2% 24.8%

Luhansk 63.2% 36.8%

Odessa 81.7% 18.3%

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Sparse remote/virtual consultation accommodations further limit the accessibility of care in Donetsk and Luhansk. According to the population surveys, approximately one half of respondents’ PHC doctors offer remote consultations over the phone/web, which is less than the rate in Odessa (63%) by a statistically significant difference. This likely contributes to slight variance in how respondents interact with their PHC doctors – over 83% and 81% of respondents in Donetsk and Luhansk, respectively, interact in-person with their doctor, compared to 77% in Odessa, where respondents are more likely to interact via phone, online, or home visits (23% in Odessa versus 16% in Donetsk, with no statistically significant difference in Luhansk). Lastly, when asked to specify all the ways that they made appointments with their PHC provider, respondents in Donetsk and Luhansk indicated phone/online methods (74% and 75% of respondents, respectively) less often than in Odessa (87% of respondents). Although these differences are not very large, they are statistically significant, suggesting that there are fewer remote consultation/scheduling opportunities in the GCA of Donetsk and Luhansk. This may be due to the fact that there are more PHC facilities in Odessa, resulting in more competition among HCFs and leading to more innovative consultation and appointment methods. Partners also confirmed that HCFs in Donetsk and Luhansk lacked the technology, Internet, and digital literacy of health workers to conduct telemedicine consultations. Nevertheless, remote/virtual options have grown in importance given the COVID-19 pandemic. Additionally, remote/virtual accommodations are even more important for people with limited mobility, such as the elderly population – who live in Donetsk and Luhansk in greater proportions and whose barriers were likely undercounted in our population survey.

Figure 40: Availability of PHC Remote Consults

Does your PHC doctor offer remote consultations (i.e. over the phone)?

I don't know No Yes

Donetsk 29.1% 22.2% 48.7%

Luhansk 22.3% 24.9% 52.8%

Odessa 21.1% 16.3% 62.5%

Figure 41: Type of PHC Interaction

What was the format of your usual interaction with your PHC doctor over the past two years?

83.2% Donetsk Luhansk Odessa 80.9% 76.7%

13.5% 14.8% 17.3% 0.3% 3.1% 3.0% 2.4% 1.2% 2.7% 0.7% 0.3%

In-person visit to a doctor Consultation over the Online health resources Home visit of a doctor Other in a facility phone (messengers, chat-bots, training courses, etc.)

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 42: Appointment Methods

How did you get an appointment with your PHC doctor?

Donetsk Luhansk Odessa

35.7% 35.3% 34.0% 33.3% 32.7%

25.3% 25.9% 23.5% 21.5% 19.9% 16.3% 17.0% 13.7% 10.1% 9.3% 7.1% 6.7% 3.0% 1.9% 2.0% 0.6% 0.3% 1.0%

By calling my Through a By visiting the By calling the By visiting my I do not get any My doctor made In another way doctor by phone medical reception desk reception desk doctor prior the appointment information or the hotline of appointment, I for me system or a the healthcare just walk in and patient's facility by phone wait in a queue electronic account

Ability to Reach Poor road/transportation conditions may pose a significant barrier for vulnerable and rural populations. Our population surveys did not reveal major barriers for people to physically reach HCFs, with approximately two-thirds of respondents reporting that it was either “very easy” or “a little easy” to reach their PHC doctors and over three-quarters of respondents reporting that it took them less than 30 minutes to reach their PHC doctors. Although slightly less ideal, the results are similar for SHC, and they are comparable with the responses in Odessa. However, our surveys did not capture many people from vulnerable population groups (such as elderly people), who have more limited mobility and compose a greater proportion of the population in Donetsk and Luhansk, and therefore, the results may be biased for this barrier. Findings from the desk review may be biased in the opposite direction, primarily capturing the perspectives of vulnerable population groups and people in hostility areas as the target audience. Several studies identified distance to a HCF, poor quality of road networks, and insufficient public transportation as barriers to healthcare in Donetsk and Luhansk, especially for people with limited mobility, those relying on caregivers, and those traveling from hard-to-reach rural areas to district/oblast hospitals, which is time- and money-consuming [13, 16, 17, 19, 26, 33, 34, 50, 55, 77]. Access to HCFs might be more problematic during the winter season, as reported by about half of households in rural areas according to one study [35]. Overall, the transport sector was estimated to be the most damaged due to the conflict (with $352 million of damage) in 2017 [77], and thus, poor quality of the road network reduced accessibility and promptness of health assistance, including emergency care [26, 34, 35, 40, 43, 53, 78]. Access might be even more restricted close to the contact line [26, 34, 40, 43, 53, 78]. Furthermore, distance to HCFs and bad transportation increased travel costs and barriers for people living in rural areas and people with disabilities in Donetsk and Luhansk [12, 16, 19, 26, 33, 34, 36, 73]. Therefore, vulnerable people (including poor families, families with young children, elderly people, people with disabilities, and people living in hard-to-reach rural areas or close to the contact line) might be disproportionally affected by the challenges involved in travelling to seek health care. When taken together, insights from our population surveys and the desk review can offer a full picture of the situation in the GCA of Donetsk and Luhansk. Partner consultations confirmed this, noting that the roads have improved dramatically over the past few years but are still a major issue for some areas.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 43: Ease of Reaching PHC

How easy is it for you to physically reach the location of your PHC doctor on a scale from 1 (very difficult) to 5 (very easy)?

1 - Very difficult 2 - A little difficult 3 - Neither difficult nor easy 4 - A little easy 5 - Very easy I don't know because I've never been to a PHC doctor

Donetsk 1.7% 5.1% 22.8% 44.6% 22.0% 3.8%

Luhansk 3.0% 7.1% 26.7% 39.5% 21.8% 1.9%

Odessa 2.9% 7.3% 21.9% 38.0% 23.8% 6.2%

Figure 44: Ease of Reaching SHC

How easy is it for you to physically reach the location of the nearest hospital on a scale from 1 (very difficult) to 5 (very easy)?

1 - Very difficult 2 - A little difficult 3 - Neither difficult nor easy 4 - A little easy 5 - Very easy I don't know

Donetsk 2.1% 6.7% 28.5% 41.7% 19.9% 0.9%

Luhansk 1.2% 7.3% 35.1% 34.7% 20.6% 1.2%

Odessa 3.5% 8.4% 29.0% 40.9% 16.3% 1.9%

Figure 45: Duration to Reach PHC

How long did it take you to physically reach the location of your PHC doctor?

Donetsk Luhansk Odessa 79.3% 77.1% 78.7%

17.1% 16.8% 13.9% 2.8% 4.6% 4.3% 0.4% 0.8% 1.7% 0.4% 0.8% 1.3%

Less than 30 minutes 30 minutes - 1 hour 1 - 2 hours I don't know More than 2 hours

Figure 46: Duration to Reach SHC

How long did it take you to physically reach the hospital / specialized health care provider?

68.0% 68.7% Donetsk Luhansk Odessa 55.7%

23.2% 17.2% 22.1% 7.1% 9.8% 9.0% 4.0% 2.4% 5.1% 2.4% 2.0% 3.3%

Less than 30 minutes 30 minutes - 1 hour More than 2 hours 1 - 2 hours I don't know

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Tier 4: Affordability & Ability to Pay Affordability Informal payments decrease the affordability of health care across Ukraine. It is estimated that more than a half (55%) of all health expenditure in Ukraine consist of out-of-pocket payments [73]. In 2015, 93% of households paid out of pocket for health services in Ukraine, and the average nominal level of out-of-pocket spending on health per person doubled from 2010 to 2015 [79]. According to the 2019- 2020 study on informal payments for four priority SHC services in Ukraine, more than half of respondents (52.6%) reported paying informally during their last five visits to SHC facilities, with older patients (age 55-69) and women more likely to pay informally [80]. Furthermore, patients living in the eastern regions of Ukraine were the least willing to pay informally, with 54% reporting that they would not make informal payments, compared to only 40% in the southern regions of Ukraine. [80]. The Health Index survey also suggests that informal payments made during the most recent outpatient visit are less prevalent in Donetsk (2% in 2018 and 5% in 2019) and Luhansk (11% in 2018 and 1% in 2019) than in Odessa (21% in 2018 and 26% in 2019) or Ukraine overall (10% in 2018 and 12% in 2019) [42, 47, 81]. This is confirmed by the Informal Payment Study at the PHC Level, which found that Donetsk and Luhansk had one of the lowest frequencies of informal payments at 16% (compared to 36% in Odessa) [81]. Our population surveys also confirm this lower rate of informal payments, with approximately 20% of respondents in Donetsk and Luhansk reporting that they paid for PHC (which should be free), compared to 38% in Odessa. Contributing to this difference, the financial wellbeing of our survey respondents in Donetsk and Luhansk was slightly worse (30% in Donetsk and 34% in Luhansk report being able to afford only food or less) than that of the respondents in Odessa (where 25% report being able to afford only food or less). Despite this lower rate, informal payments can still have a profound impact on affordability in the region. For example, one study reported that only about a quarter of physicians in Donetsk and Luhansk oblasts thought that their patients could pay for additional healthcare services (such as extended diagnostics or physician home visits), noting that their patients are “very poor” [67].

Interestingly, our population surveys found that patients in Donetsk and Luhansk were more likely to pay informally following a request from a health care worker rather than from their own will (which composed 50% of responses in Odessa, compared to 30% or less in Donetsk and Luhansk), suggesting that the primary cause of informal payments in Donetsk and Luhansk is inappropriate requests for payment by doctors, nurses, or other healthcare staff. This is problematic not only in terms of affordability of care but also because it contributes to patients’ low awareness and misunderstanding of health reforms; by asking for payments for care that should be free, health workers in the region further exacerbate the above- mentioned barrier of low health reform literacy and cultivate distrust for the health system.

Figure 47: Informal Payments for PHC

Did you make any payments to your PHC doctor or other staff in PHC facilities for the care you received over the past two years? I don't remember No Yes

Donetsk 3.0% 76.8% 20.2%

Luhansk 7.4% 72.8% 19.8%

Odessa 6.3% 55.7% 38.0%

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 48: Reason for Informal Payments

Why did you pay for the primary health care you received?

50.0% Donetsk Luhansk Odessa

30.0% 28.1% 25.0% 23.3% 21.7% 21.7% 19.3% 18.8% 13.3% 11.4% 9.4% 9.6% 10.5% 9.4% 8.3% 6.3% 6.7% 8.8% 3.1% 1.8% 3.3% 2.6%

It was my own PHC doctor Nurse asked me Other My friends or Other patients Other Other: I had to will asked me healthcare staff relatives recommended it pay for asked me recommended it diagnostic tests/lab/images

On top of typical costs for health care, there may be increased costs of medicines and increased costs of travelling to health care providers, both due to the poor roads. Our desk review found that costs of medicines are higher in Donetsk and Luhansk depending on the geographical location and subsequent increased transport costs due to the increased number of checkpoints and poorer quality of the road network [55]. This is significant because spending on medicines accounts for more than a half of total household health spending, and thus, is one of the biggest contributors of catastrophic spending for Ukrainian patients [79]. Further exaggerating this barrier, implementation of the Affordable Medicines Program has been slow in the region, with the lowest proportion of patients benefitting from the free medicines of the program as well as the lowest proportion of pharmacies per inhabitants enrolled in the program in Donetsk, as of 2018 [82]. Poor transportation factors also lead to increased costs for the patient to travel to HCFs. Several studies examined how travel cost hampered access to healthcare services in Donetsk and Luhansk [16, 26, 36], which might be especially important for people with limited finances, those living in rural areas, and those close to the contact line. Ability to Pay Health care consumers’ inability to pay results in underutilization of some services. Although money was not a common reason for why survey respondents did not sign a declaration or see a PHC doctors (as seen in Figure 25 above), it was a reason for not utilizing other health care services. Approximately 10% of respondents across the three oblasts cited lack of money as a reason for not utilizing SHC services (the most commonly cited reason after a lack of need). Additionally, 10% of respondents cited lack of money as a reason for not receiving a flu vaccination (as seen in Figure 18 above). Money is an even greater determining factor for mental health care. According to the population surveys, approximately 10% of respondents reported that they needed mental health care over the past two years, but of those people, only 24% in Donetsk and 25% in Luhansk received the mental health care that they needed. Among respondents who did not receive fully the mental health care that they needed, a lack of money was the number one reason why – with 44% of respondents in Donetsk and 67% of respondents in Luhansk saying that they did not have enough money to pay for the needed mental health care. Rates were similar in Odessa. Additionally, among respondents who reported that they did not follow doctors’ orders fully, 41% in Donetsk and 25% in Luhansk cited a lack of money as a reason.

The desk review suggests that patients’ inability to pay is an even greater barrier to care in Donetsk and Luhansk, which is not surprising given that these studies captured more vulnerable populations than our mobile phone-based surveys. A number of studies reported on patients’ inability to pay for necessary healthcare services [14, 16, 25, 28, 29, 42, 47, 55, 78, 79, 83]. According to the findings of two rounds of the Health Index survey, the highest proportion of people not seeking healthcare because of it being too expensive was in Luhansk (32.7% in 2018 and 25.3% in 2019), followed by Odessa (23.2% in 2018 and

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

24.4% in 2019) and Donetsk (18.7% in 2018 and 6.1% in 2019) [42, 47]. Another assessment found that nearly 40% of the population in the GGA had to cut their expenditures on healthcare and use their savings to cover other basic needs [16]. Moreover, about half of households in the Donbas had at least one household member facing difficulties in accessing healthcare services because of cost (especially for SHC services) [16, 78]. As a result, one of the main reasons for crossing the contact line reported by the GGA residents was to receive free healthcare services in specialized treatment facilities located in the NGGA [33]. This barrier is especially important for people with limited financial resources, such as people who rely on their pension as a single source of income and IDPs in Donetsk and Luhansk [16, 28, 78]. Composing a large proportion of these groups, elderly people spent the majority of their income on medicines (59%) [14].

The desk review suggested that this inability to pay results in underutilized care. For example, inability to pay was the main reason for interruptions in noncommunicable disease medication among patients in the Donbas, including IDPs [28]. For mental health care, the perceived high cost of consultation fees caused patients not to seek the assistance they needed [29]. Among people living in rural areas of Donetsk and Luhansk, health care expenses were reported as prohibitive to accessing needed health services [55]. For those closer to the contact line, inability to pay results in even greater underutilization, with 80% of households living within the 20-km zone and 70% within the 5-km zone reporting the cost of medicine as the primary barrier to accessing health care services [26, 35]. Furthermore, female-headed households were more likely to reduce spending on essential health care compared to male-headed households in the GCA of Donetsk [16, 84]. Overall, the cost of meeting health needs is a primary barrier to health care, especially for the most vulnerable groups, leading to their underutilization of care [26, 35-37, 42, 47].

Figure 49: Reasons for Not Visiting SHC Provider

Why have you not been to the hospital or a specialized health care provider in the past two years? 87.2% 84.1% 83.0% Donetsk Luhansk Odessa

11.4% 10.1% 10.1% 2.0% 2.0% 3.2% 1.0% 0.7% 2.0% 1.5% 1.6%

I have not needed I do not have enough I do not trust doctors It is too difficult to reach Other hospital/specialized health money to pay for the hospital / specialized care specialized care care provider

Tier 5: Appropriateness & Ability to Engage Appropriateness Poor patient satisfaction levels suggest that health care access may be limited to inappropriate or inadequate care for some people in Donetsk and Luhansk. According to our population surveys, only approximately 50% of respondents in Donetsk and Luhansk were “slightly” or “very” satisfied with the PHC they received, compared to 64% in Odessa (a statistically significant difference). Similarly, only 42% and 36% of respondents in Donetsk and Luhansk, respectively, were satisfied with the SHC they received, but there was not a statistically significant difference between Odessa. The Health Index survey results did not corroborate these findings, with approximately 80% of respondents in Donetsk and Luhansk reporting that they were satisfied with their General Practitioner in

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

2019, compared to 78% in Odessa [42, 47]. However, there are some notable differences in the framing of the question and the survey methodology which might account for this difference – specifically, the in- person interview methodology that the Health Index used (as opposed to the phone application based surveys that we used) may bias respondents towards reporting greater patient satisfaction. Further suggesting that poor patient satisfaction as a barrier, our population surveys found that of the respondents who sought care in another oblast (outside of where they lived), 35% in Donetsk and 38% in Luhansk cited the desire for higher quality medical care as a reason. Poor perception of quality was also the most common reason that respondents from the GCA sought care in the NGCA. This data suggests that poor patient perception of quality may not be unique to Donetsk and Luhansk, but it may be slightly worse (especially given the limitations of our population surveys). Although we cannot rely on patient satisfaction measures to assess quality of care, this data suggests that patients face barriers in accessing what they consider to be appropriate care.

Figure 50: PHC Satisfaction

How satisfied were you with the care you received from your PHC doctor on a scale from 1 (very unsatisfied) to 5 (very satisfied)?

1 - Very unsatisfied 2 - Slightly unsatisfied 3 - Neither satisfied nor unsatisfied 4 - Slightly satisfied 5 - Very satisfied I did not receive care from the PHC doctor

Donetsk 3.4% 6.4% 38.7% 41.8% 9.1%

Luhansk 9.9% 8.6% 30.9% 42.6% 8.0%

Odessa 3.3% 4.0% 28.3% 46.3% 17.3%

Figure 51: SHC Satisfaction

How satisfied were you with the specialized/hospital care you received on a scale from 1 (very unsatisfied) to 5 (very satisfied)?

Very unsatisfied Unsatisfied Neither satisfied nor unsatisfied Satisfied Very satisfied

Donetsk 8.8% 12.8% 36.8% 36.0% 5.6%

Luhansk 12.1% 14.1% 37.4% 28.3% 8.1%

Odessa 13.1% 9.0% 35.2% 27.0% 15.6%

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 52: Reasons for Seeking Care in Other Oblasts

Why did you seek health care servics in other oblasts?

Odessa Luhansk Donetsk

Health care delivery conditions (i.e., premises) are 4.5% 6.1% worse in my oblast 5.8% 9.1% It was easier to travel to another oblast 4.5% 2.9% 4.5% Health care costs are higher in my oblast 6.1% 11.6% 6.1% Other 10.6% 11.6% 18.2% Other: I was in another oblast at the time. 4.5% 5.8% 13.6% There are no relevant health services in my oblast 16.7% 20.3% 28.8% I was referred/recommended to visit a particular 28.8% doctor 31.9% 22.7% There was higher quality medical care in other oblasts 37.9% 34.8% Figure 53: Reasons for Seeking Care in NGCA

Why did you cross the contact line into the nongovernment controlled area to receive health care services?

Luhansk Donetsk

There are no relevant health services in the government-controlled area 4.0%

Health care delivery conditions (i.e., premises) are worse in the government-controlled area 8.0%

Other 30.0% 8.0%

Health care costs are higher in the government-controlled area 20.0% 24.0%

It was easier to travel to the nongovernment-controlled area than 30.0% to access a provider in the government-controlled area 36.0%

There was a higher quality of medical care in the nongovernment- 50.0% controlled area 56.0%

Inadequate information systems further hamper the appropriateness of care. Overall, evidence highlighted existing gaps in healthcare and medical data recording systems in Donetsk and Luhansk even before the armed conflict started, and inadvertently, the conflict affected and led to a further deterioration in data collection and management [16, 26]. One situational analysis identified equipping hospitals with computer hardware and installing the Health Care Information System as a primary necessity in the region [40]. Moreover, there is no established and functioning Mine Victim Information System, inhibiting the families of child mine/ERW survivors from receiving full information about the health conditions of their children [50]. Partner consultations further confirmed this gap, with many emphasizing that HCFs lacked digital information systems or eHealth infrastructure (such as reliable computers and

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Internet) as well as staff capacity to operate technology. Further showing weak staff capacity and digital literacy, USAID surveyed providers who participated in NHSU Academy courses online (and therefore, providers who already have some digital infrastructure and literacy), and even among this group, 17.1% of respondents in Donetsk and Luhansk reported difficulties in using electronic signatures (compared to 10.6% nationally) and only 48.5% understood the need to protect information in computer systems (compared to 54.3% nationally)[85]. Additionally, our national-level population surveys found that 51% of health care consumers nationally said that their electronic health records were used during their last medical appointment compared to only 39% in Donetsk and Luhansk. These may be indications of widespread digital illiteracy among providers and/or weak eHealth infrastructure in the region, leading to inadequate information systems and telemedicine capabilities.

Hospital mortalities and lengths of stay may also suggest inappropriate or poor-quality care at the SHC level. According to MOH data, Donetsk and Luhansk have higher hospital mortality rates than Odessa or Ukraine overall, especially for certain specialties, as seen in the figure below [49]. Although comparisons between hospital mortality rates may not be accurate due to differences in how oblasts categorize their hospital beds (and therefore their mortality counts), this data may suggest that the care provided is inappropriate, inadequate, or of worse quality than in other regions. Additionally, the average length of stay (ALOS) is slightly higher in Donetsk and Luhansk (11.4 and 12.6 days, respectively) compared to Odessa (11.3) and Ukraine overall (10.6) [49], which may indicate that patients are either not recovering as quickly as in other oblasts or are staying beyond the necessary time, using valuable resources.

Figure 54: Hospital Mortality Rates

Hospital Mortality Rate by Bed Type

4.5 4.02 4.0

3.5 3.06 2.92 3.0 2.68 2.62 2.5 2.05 1.93 1.9 2.04 1.77 1.75 1.84 2.0 1.66 1.68 1.43 1.5 1.21 1.19 1.17 1.00 1.04 1.0 0.77 0.57 0.5 0.26 0.26 0.0 Overall General Therapy Surgery Cardiology Neurology Traumatology

Donetsk Luhansk Odessa Ukraine

Ability to Engage Although not unique to Donetsk and Luhansk, insufficient patient adherence presents another barrier to receiving appropriate care. According to our population surveys, approximately one-third of respondents from all three oblasts followed “some” or less of the recommendations from their PHC doctors. Although we have limited data on patient adherence to confirm these findings, the public’s reaction to the COVID-19 situation offers some confirmation of the barrier. For example, in Luhansk, one study observed a relatively low level of compliance with quarantine measures by the population [71].

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 55: Adherence to Provider Recommendations/Orders

Did you follow the orders, guidance, recommendations, referrals, or prescriptions given by your PHC doctor? 1 - I followed nothing that my PHC doctor recommended 2 - I slightly followed some of what my PHC Donetsk 3.7% 3.7% 27.6% 32.0% 28.6% 4.4% doctor recommended 3 - I followed some of what my PHC doctor recommended

Luhansk 3.7% 6.2% 22.8% 26.5% 36.4% 4.3% 4 - I followed most of what my PHC doctor recommended 5 - I followed everything my PHC doctor recommended Odessa 4.0% 2.7% 25.3% 34.3% 31.3% 2.3% My PHC doctor did not give me any orders, guidance, recommendations, referrals, or prescriptions

Low digital literacy also affects patient’s ability to engage if/when providers use technology for information sharing or consultations. Many partners suggested that the population in Donetsk and Luhansk (especially the elderly population) has low digital literacy, with little or no understanding of electronic data (such as the NHSU dashboard), the eHealth system, or telemedicine. This limits their current and future ability to access health care information as well as utilize remote/virtual consultation options (if available).

RECOMMENDATIONS To address the above barriers to accessing quality health care, the following areas should be addressed through interventions by an array of stakeholders, including donors and implementing partners (IPs) in Ukraine, the GOU, and other regional and local stakeholders. These recommendations – each requiring varying time and resources – warrant further research and planning before implementation, depending on stakeholders’ interest and willingness to engage in driving them forward. These recommendations should not be considered conclusive or binding.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Figure 56: Summary of Recommendations & Stakeholders

Target Audience Matrix of Recommendations & Stakeholders National Regional Local Donors / GOU Gov. HCFs IPs 1. Survey IDPs in Eastern Ukraine 2. Conduct a Census in the Region Improve 3. Standardize Health Care Consumer Surveys Data for 4. Conduct a Health Workforce Analysis Decision- 5. Validate Any Safety Concerns at HCFs Making 6. Enhance Data Available in the eHealth System 7. Conduct Further Qualitative Studies on Vulnerable Populations 8. Share a Summary of the Assessment Findings and Recommendations Build 9. Create Checklists and Communication Aids to Improve Provider Outreach Capacity 10. Create Checklists for HCFs on External Signs and Features of Health 11. Implement Signage within HCFs on Free Services Care 12. Develop Providers’ Skills and Infrastructure for Telemedicine Providers and HCF 13. Train HCF Managers to Optimize Financing Managers 14. Open PHC Service Points in Hard-to-Reach Areas

Recommendations 15. Integrate Basic Mental Health Care within PHC Providers

Increase 16. Develop Patient-Facing Communications Campaigns for Health Literacy Patient 17. Develop Patient-Facing Communications Campaigns for Reform Literacy Literacy 18. Develop Patient-Facing Communications Campaigns for Digital Literacy 19. Expand NHSU Contracting Clauses to Include Accessibility Features Enhance 20. Integrate Accessibility Indicators into Performance Based Financing HCF 21. Improve the GOU’s Database of HCFs with Survey Data Monitorin 22. Analyze Procurements for Justification g and Incentives 23. Incentivize Adequate Health Workforce Availability 24. Strengthen HCF Advisory Boards

Improve Data for Decision-Making The gap in high-quality data for decision-making should be addressed in order to better guide future decisions about health care and the most effective allocation of resources. In the process of this assessment, we ran into numerous barriers in obtaining reliable data to base our findings and recommendations, including data on population, health care resources, and health outcomes. To address the most immediate and important data gaps, we recommend the following: 1. Survey IDPs in Eastern Ukraine: There is very little data on the demographics and health care utilization of IDPs in each region, limiting the accuracy and reliability of health care utilization data as well as general population data to inform all health and social services. To fill this gap, a partner, such as the IOM, should conduct more comprehensive surveys of IDPs to better understand who has signed declarations and who is facing barriers in accessing health care. In collaboration with other partners, the IOM’s continued efforts to develop, expand, and strengthen tools for IDP monitoring can lead to valuable data for decision-making. 2. Conduct a Census in the Region: The national census has not been conducted in Ukraine since 2001, leaving major gaps in data – including foundational data such as population. Given that a national census is very expensive, regional censuses may provide a stopgap. Donetsk and Luhansk 45

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

should be priorities to cover in any regional censuses, given their large proportion of IDPs and therefore, inaccurate data based off official statistics. This data will be critical to inform health care reform decisions, as well as all public services. 3. Standardize Health Care Consumer Surveys: The current data collected about the population’s awareness of health care rights and health literacy is disjointed and not easy to compare due to the differences in the framing of questions. The Center for Public Health (CPH) can address this by creating a standard list of questions and coding for organizations to use in their surveys measuring health literacy, behaviors, and trust. This will enable the tracking of health literacy over time as well as improved understanding of why patient behaviors are unique in Donetsk and Luhansk (such as the low rate of signed declarations and low utilization rates). 4. Conduct a Health Workforce Analysis: Considering the gaps in health workforce distribution in Eastern Ukraine, the GOU and regional authorities need more information and guidance to optimize the health workforce within the Hospital Districts. Therefore, the donor community/IPs should assist the GOU and regional authorities to conduct a health workforce analysis in Donetsk and/or Luhansk to determine which health workers are needed and where (with the largest gaps expected in rural areas). This will help the GOU and regional authorities to develop a plan to redistribute or retrain the workforce to fill gaps in availability. 5. Validate Any Safety Concerns at HCFs: Although very few HCFs were reported as looking unsafe according to our population surveys, safety concerns should be taken seriously, and therefore, all HCFs that have been flagged with potential safety concerns should be shared with regional authorities. Then, regional authorities should check those HCFs to validate these concerns and develop plans to mitigate issues, if any. 6. Enhance Data Available in the eHealth System: Data collected from HCFs and reported at the oblast level is often unreliable and incomparable due to differences in how the data is collected and/or categorized. The expanded use of the eHealth system for data collection from HCFs will enhance the opportunity for data-driven decision-making. The NHSU and the eHealth State Owned Enterprise (SOE), in collaboration with donors/IPs, should identify the data that is currently collected in the eHealth system and gaps to improve the data within the system. More robust data within the system will allow for more robust analyses and comparisons between regions in the future. 7. Conduct Further Qualitative Studies on Vulnerable Populations: To fill data gaps, further studies should focus on the most vulnerable populations, including people with disabilities, children, women, and elderly people, examining specific barriers and vulnerabilities of these groups. For these populations, especially those facing multiple vulnerabilities, it is important to unpack which factors impede access to healthcare utilization and how. Moreover, it is important to identify possible enablers to facilitate access and utilization of healthcare services among the most vulnerable groups in the region. For instance, a local government’s level of decentralization may impact access in meaningful ways. Qualitative studies examining daily lived experiences of health-seeking behavior among people with disabilities, children, women, and elderly people in the Donbas will contribute to the growing body of evidence to improve understanding of how to meet the health needs of these populations. Build Capacity of Health Care Providers and HCF Managers Many access barriers can be reduced through increased and improved engagement by health care providers and facilities. The following recommendations can bring the greatest impact: 8. Share a Summary of the Assessment Findings and Recommendations: As a first step in educating health care providers, the results of this assessment should be shared with health care providers via a visually-appealing leaflet summarizing the main findings and recommendations of this assessment. The comparison of Donetsk and Luhansk with Odessa and Ukraine overall will increase health care providers’ understanding of the barriers that their patients face and motivate 46

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

them to improve performance in impactful ways. Additionally, the leaflet will summarize the recommendations for improvement and direct the providers to additional resources. 9. Create Checklists and Communication Aids to Improve Provider Outreach: Providers must improve their outreach to patients in the community, their information-sharing with patients during appointments, and their follow-up with patients after appointments in order to increase patients’ health literacy, adherence, and trust in the health system, all of which will result in improved access to care. To support providers in doing this, donors/IPs, in collaboration with the GOU and/or regional authorities, should develop checklists and communication aids (such as scripts and/or pamphlets) for health care providers, instructing them on what, when, and how to communicate in a patient-centered way. Materials should also include extra, specific guidance for interacting with people with disabilities and people from vulnerable population groups, who likely face greater barriers in obtaining information from providers in a positive way. The materials should also provide guidance on how to make SHC referrals, increasing integration and communication between the levels of care to further build patient trust within the system as a whole. These prompts and tools can result in daily behavior change without expending significant resources. Furthermore, to ensure that providers receive these tools, IPs can spread the checklists to HCFs through current programs, such as the “Best Practices for Health Care Facility Management” course and the Centers of Excellence. 10. Create Checklists for HCFs on External Signs and Features: To help HCFs understand requirements and suggestions for external signage, navigation, and disability accommodations, the donors/IPs should create checklists for HCF managers, in collaboration with the GOU and/or regional authorities. The checklists can also include other suggestions for facility features, such as fire safety requirements (which partners reported to be an issue in the region), and other suggestions for information-sharing best practices, such as listing of available services as an annex to the patient declaration. Furthermore, IPs can spread the checklists to HCFs through current programs, such as the “Best Practices for Health Care Facility Management” course and the Centers of Excellence. 11. Implement Signage within HCFs on Free Services: To improve patients’ understanding of which health care services are free and discourage health workers from asking patients for money for services that should be free under the PMG, HCFs (especially PHC facilities) should post signs with clear indications of what is and is not free. Donors/IPs, in collaboration with the GOU and regional authorities, can develop these signs and disseminate them via current programs, such as the “Best Practices for Health Care Facility Management” course as well as the PHC Centers of Excellence. When disseminating these signs, partners can also emphasize the importance of posting the signs and the expected impact on reducing informal payments for health care. 12. Develop Providers’ Skills and Infrastructure for Telemedicine: Remote and virtual consultations will increase the accessibility of health care, especially for patients that may have limited mobility or means to travel. Telemedicine options should be analyzed and integrated into the health financing and eHealth systems at the national level. Then, to increase the prevalence of these remote options in Donetsk and Luhansk, donors/IPs and the GOU should guide and train health care providers and HCF managers on ways to effectively deploy telemedicine as well as increase their digital literacy. This should include guidance on how to procure necessary technology (computers, Internet, etc.), interactive workshops to build staff capacity to use the technology effectively and securely, and strategies to roll out telemedicine (as well as capabilities of the eHealth system) at the HCF from an operational, legal, and administrative standpoint. To encourage provider participation in trainings, the GOU should link this training with the Continuing Professional Development (CPD) system, offering CPD points and a certificate to all providers that master the necessary skills. 13. Train HCF Managers to Optimize Financing: According to the recent USAID study on PHC facilities in the grey zone of Donetsk and Luhansk, HCFs in the region are poorly managed, with 47

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

low levels of income growth under the capitation payment model (15.25%) compared to the average in Ukraine (48.5%) and a smaller share of revenue from the PMG (78.3%) compared to the national average (81.2%) [60]. Instead, HCFs in the region relied heavily on unstable humanitarian aid and charitable donations, did not maximize paid services as an avenue to increase income, and lacked reserve funds [60]. These inefficiencies could contribute to accessibility barriers by impacting the HCFs’ ability to fund necessary renovations, equipment, accommodations for people with disabilities, staff salaries, etc. Furthermore, partners in the region confirmed that there is a high level of donor funding for infrastructure development but a need for support in prioritizing investments at the regional and local level. Therefore, donors/IPs and the GOU should focus capacity-building efforts on HCF management and financial planning via trainings and tools for HCF managers and owners (local authorities), in close collaboration with regional authorities. With funding properly directed, HCFs can fill immediate gaps in accessibility without sacrificing other elements of providing quality care. 14. Open PHC Service Points in Hard-to-Reach Areas: To increase patient coverage and the rate of signed declarations with PHC providers, there should be more PHC service points, especially in rural and other hard-to-reach areas. This will likely require collaboration between the GOU, regional authorities, and the donor community to deploy innovative and systematic solutions, such as the opening of more PHC facilities (either as standalone HCFs or offshoots of current HCFs, ideally in localities with over 1,000 population) and/or the use of mobile medical units for PHC outreach. For the latter, the GOU and partners should consider data from current pilots of mobile units for mental health and palliative care. Rotating teams of health care workers can staff either new HCF outposts or temporary mobile units to fill this gap. Bringing health and social services to the patients can not only increase their health care utilization but also their health literacy, health reform literacy, and digital literacy for telehealth options. 15. Integrate Basic Mental Health Care within PHC Providers: Barriers to accessing health care are greater for mental health care – patients lack knowledge of how to access care, report that mental health care providers are not available, and subsequently, underutilize mental health care services. To bring mental health care closer to the patient, basic mental health care services should be integrated within PHC. This will require the GOU to provide the necessary financial incentives for PHC providers and PHC providers to increase their knowledge and skills related to mental health care provision, including mental health first aid and referrals to more specialized mental health care providers. Donors/IPs can support the GOU in developing this policy as well as develop guidance for PHC providers and disseminate it, or other pre-developed training content, via current programs, such as the “Best Practices for Health Care Facility Management” course and the PHC Centers of Excellence. Increase Patient Literacy The population in Donetsk and Luhansk, as well as the rest of Ukraine, will obtain better access to health care if they improve their ability to perceive health needs and their ability to seek care. To do so, their health literacy and health reform literacy must be increased, and therefore we recommend the following: 16. Develop Patient-Facing Communications Campaigns for Health Literacy: In partnership with civil society and patient organizations, the GOU and/or IPs should collaborate with regional authorities to develop and disseminate communication materials to increase the population’s health literacy. Materials should cover key topics, such as vaccination, PHC for prevention, antibiotic use, and adherence, and they should be disseminated via a range of platforms, such as print posters in high-trafficked areas, social media posts, newspapers, television, and radio. Approaches to convey the messages in the most effective way should be customized for the population in Donetsk and Luhansk based off findings from population surveys. This customization should include translation of materials to Russian (and other languages spoken in the region) to accompany the Ukrainian language materials. 48

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

17. Develop Patient-Facing Communications Campaigns for Reform Literacy: Expanding the public’s health reform literacy and trust is already a priority of the MOH and NHSU, and it should continue to be a priority in order to increase patients’ understanding of how to seek health care and what should be provided for free under the PMG. The GOU and regional authorities can partner with donors/IPs to strengthen their patient-facing communications campaigns related to health reform literacy, targeting the population countrywide. Approaches to convey the messages in the most effective way should be customized for the population in Donetsk and Luhansk based off findings from population surveys. This customization should include translation of materials to Russian (and other languages spoken in the region) to accompany the Ukrainian language materials. 18. Develop Patient-Facing Communications Campaigns for Digital Literacy: To enable the public’s ability to interact with online information sources, the eHealth system, and telemedicine platforms, a communication and education campaign should be deployed. Donors/IPs, the GOU, and regional/local authorities should work together to develop and disseminate this campaign countrywide, with region-specific customizations and outreach efforts for vulnerable populations in Donetsk and Luhansk. This should go hand-in-hand with further development of the eHealth system to include user-friendly applications and interfaces. This customization should include translation of materials to Russian (and other languages spoken in the region) to accompany the Ukrainian language materials. Enhance HCF Monitoring and Incentives Improvements at the HCF level may not be implemented or maintained if the GOU does not monitor and incentivize these changes. Therefore, we recommend that the GOU and/or other watchdog organizations should enhance their oversight function in the following ways: 19. Expand NHSU Contracting Clauses to Include Accessibility Features: To enforce the installation of appropriate signage and disability accommodations (i.e., ramps), the NHSU can expand its contracting clauses to require these external features. Such requirements will mandate improvements to increase accessibility of HCFs but will require monitoring by the GOU or watchdog organizations (such as HCF supervisory boards and/or civil society organizations). The NHSU has already initiated first steps to monitor this – with a modification of Order #410, the NHSU now collects weekly reports on HCFs’ accessibility. This is a very important step but can be taken further by 1) incorporating monitoring by patient organizations to capture the real-life user experience and 2) tying it to financing. Donors/IPs can help draft the new clauses and communicate them to both HCFs and oversight organizations. 20. Integrate Accessibility Indicators into Performance Based Financing: Financial incentives can be used instead of or in addition to contractual mandates. The NHSU is rolling out Performance Based Financing (PBF) this year under PMG, which will financially incentivize health care providers to meet certain performance targets (such as vaccination rates for children). As PBF expands under PMG 2022, the GOU should seize the opportunity to include indicators related to accessibility. Such indicators could range from the presence of external features of the HCF (i.e., signs and ramps) to telemedicine availability to patients’ utilization of proven preventative health care practices. These targets will incentivize health care providers and HCF managers to improve their facilities, behaviors, and outreach in order to increase accessibility. Donors/IPs can support the GOU in developing these indicators based off international best practices and piloting them at select HCFs in Donetsk. 21. Improve the GOU’s Database of HCFs with Survey Data: The NHSU currently maintains a database of HCFs, but this should be expanded with the data collected through the real-time population surveys. With this data, the GOU database can monitor which HCFs have inaccurate geocoordinates, lack signage, or lack disability accommodations. With these flags, the national GOU can improve the data that they share via their online dashboards and can notify regional authorities and HCF owners of HCFs that need attention. Once the COVID-19 pandemic 49

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

subsides, survey contributors can also provide data before/after visits inside the HCF to report on internal features and perceptions of quality, which the NHSU can include within its database of HCFs for improved oversight. 22. Analyze Procurements for Justification: HCFs should only purchase and receive new equipment (especially expensive resources like CT scanners) if they are needed and will be utilized properly. To monitor this, the GOU or a third party should analyze procurements at each HCF and measure utilization rates of the equipment. Each analysis should assess if the procurement was justified and provide recommendations to improve planning future procurements at the HCF. The assessment will help HCF owners to determine when new equipment is warranted in the future and will warn them that all procurements must be proven justifiable, with irrational procurements (i.e., for equipment that is not utilized or is utilized for the wrong cases) potentially impacting a HCF’s financing from the GOU (i.e., through PBF mechanisms). As a result, HCFs will not over-purchase equipment and regional authorities could potentially re-allocate equipment to improve availability and efficiency of resources throughout the region. 23. Incentivize Adequate Health Workforce Availability: To encourage health workers to fills vacant posts in Eastern Ukraine and HCF managers to re-train/hire workers in lacking specialties, local authorities should provide financial and material incentives from local budget programs. These incentives will help overcome risks to security and wellbeing due to the conflict. To do so, local authorities will need training on HCF management (including financing and human resources) to help them maximize additional financial resources and direct investments appropriately towards salaries and potential living/housing allowances. The GOU can also explore creative options to attract and cultivate a robust network of health workers in Eastern Ukraine, such as by building new ambulatory care centers in rural areas for doctors to use for free or partnering with medical education institutions to find ways to encourage new doctors to rotate to posts in the East. With expert support from donors/IPs, the regional/local authorities and the GOU can develop a system of evidence-based financial and nonfinancial incentives and distribution mechanisms at the regional and local levels. This will require active collaboration between the levels of government as well as the Ministry of Reintegration of Temporarily Occupied Territories (MTOT). 24. Strengthen HCF Advisory Boards: To provide overall oversight of HCFs’ management and operations, advisory boards should be utilized to their fullest potential. With increased engagement of patient organizations and other civil society organizations, HCFs will be more likely to implement changes to improve accessibility and efficiency. Donors/IPs can roll out best practices in establishing and implementing HCF Advisory Boards, working closely with HCF managers and owners and utilizing current learning programs as well as HCF mentors to disseminate the best practices across the regions. The HCF Advisory Boards can also be used to report on-the-ground insights from the field to the GOU, equipping policy-makers with insights from the field to inform their decisions related to the health reform and potential customizations for Eastern Ukraine.

CONCLUSIONS Due to the ongoing conflict in Eastern Ukraine, unique demographics and challenges define the GCA of Donetsk and Luhansk. The population in these regions face many barriers when accessing health care – some of which are unique to Eastern Ukraine and some of which are common throughout Ukraine. These barriers affect all dimensions of access, impeding patients’ perception of health needs, seeking of health care, reaching of health care, utilization of health care, and consequences on health. To reduce these barriers and thereby increase accessibility, a wide range of stakeholders must come together to develop and implement policies, best practices, and support customized for the region. This will require intentional, ongoing collaboration between the national GOU, regional and local authorities, health care providers, and the donor community. With collaborative, data-driven decisions, we can improve health care access in the vulnerable regions of Ukraine. 50

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

ANNEXES

Annex 1. Literature Review Methodology Details

Online databases included: the Cochrane Database of Systematic Reviews, the Campbell Collaboration Database of Systematic Reviews, PubMed/MedLine, and the Wiley Online Library. Key search terms were identified within three key concepts: Health, Patients and East of Ukraine (Table Key search terms for desk review). These terms were also used to identify relevant documents from which Medical Subject Heading (MeSH) or other database-specific terms and keywords were extracted. Key terms were searched using a free text strategy in the titles and abstracts. This allowed having broader, more sensitive approach and eliminates the possibility of relevant items to be missed. MeSH were applied to give more specific results. Search results were rapidly scanned for relevance and those meriting further examination were imported into EndNote for further consideration. When large numbers of results were returned, these were scanned in the order returned until potentially relevant items did not appear on 10 consecutive search results pages. Guidelines, reports and policy documents were searched using Google Scholar and Opengrey.eu as well as we examined websites of key International and National organizations, working in the GOU-controlled territories of Eastern Ukraine, including OCHA, the WHO and the Health Cluster, European Commission's Directorate-General for European Civil Protection and Humanitarian Aid, Medicos del Mundo, USAID, etc.

Table: Key search terms for desk review

1. Health 2. Patients 3. East of Ukraine Health service(s) Patient(s) East of Ukraine (AND combined with) (AND combined with) (AND combined with) OR Health need(s) OR People / person(s) OR Eastern Ukraine OR Health belief(s) OR Population OR Eastern region(s) of Ukraine OR Health cost(s)(ing) / budget (ing) OR Client (s) OR Eastern (Oblast(s)) of Ukraine OR Health problem(s) OR internally displaced persons OR Eastern (territory(ies) (IPDs) OR Health Quality OR Elderly people OR Eastern part(s) of Ukraine OR Health assessment OR Youth / young people OR Luhansk and Donetsk region(s) / oblast(s) OR Health care / health care facility (ies) OR Women OR Donbass OR Health professional(s) / OR Adult(s) / adult population OR Government-controlled OR provider(s) / personnel / careers uncontrolled areas of the Donetsk / Luhansk region(s), Ukraine OR (GCA OR NGCA) OR GOU-controlled territories of Eastern Ukraine

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

OR non- GOU-controlled territories of Eastern Ukraine OR Health sector OR Adolescents / underaged OR "Grey zone" of Ukraine children OR Public Health OR Minors OR Temporarily occupied territories of Ukraine OR Health Reform(s) OR Dependent(s) / Dependent OR conflict/ war zone, Ukraine person(s) OR Health literacy / training / education OR Person(s) with disability / OR disabled person OR Medicine OR healthcare recipient(s) OR

The final search strategy was defined as: Search terms for Type and Mode of Learning Strategy; Search term for Public Health Domain; Search term for Context; 1 AND 2 AND 3.

The results of the search and screening process are described in Figure: PRISMA flow chart of citations

Figure: PRISMA flow chart of citations2

2 http://www.prisma-statement.org/PRISMAStatement/

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

All identified references were imported into the bibliographic management software ENDNOTE X7. We screened all identified references and in total, 72 were collected for analysis. All data was extracted systematically using a standardized form that included information on the period of study, location, study sample and design, research questions/aim and objectives, key findings, and conclusions (. Data extraction form). Data extraction form Title Date of publishing (year) Authors DOI (URL) Language (English or Ukrainian) Study design (type of study) Research aim/question and research objectives Period of data collection Regions Sample size Main methods Key Results_approachability Key Results_accessibility Key Results_availability Key Results_affordability Key Results_appropriateness Main conclusions Comments*

All data extracted was analyzed using analytical categories, which were developed on the base of the Access Framework.

Annex 2. Summary Table of Key GOU Data and Analysis

Category Key Indicator Donetsk Luhansk Odessa Ukraine Population (excluding people who live in the NGCA and including IDPs) [10, 21, 59] 2,326,051 894,783 2,409,469 39,419,414 Area (square kilometers)[86] 17,700 18,300 33,300 - Population density per square kilometer (excluding the NGCA and excluding IDPs) 131.42 48.90 72.36 - [10, 21, 59, 86] Age distribution: % of the total population that is over age 65 years (% of females 20.1%* 22.2%** 15.9% 17.1% age 65+ out of all females, % of males age 65+ out of all males) [9] (24.5% of (27.1% of (19.5% of (21.1% of Demographics *For Donetsk estimates, the population (numerator and denominator) excludes the NGCA women, women, women, women, and excludes IDPs 14.8% of 16.5% of 11.8% of 12.4% of **For Luhansk estimates, the population (numerator and denominator) includes the NGCA men) men) men) men) and excludes IDPs Age distribution: % PHC declarations that are for patients over age 40 years [10, 57.9% 60.4% 49.3% 52.4% 21, 46, 59] Unemployment rate (excluding IDPs) (2019) [32] 13.6% 13.7% 5.9% 8.2% Disease HIV prevalence rate (per 100,000)(2019) [44] 493.9 - - 344.7 Prevalence TB prevalence rate (per 100,000) (2019) [45] 57.05 - - 73.9 % of population with PHC declaration (excluding NGCA and including IDPs) [10, 59.7% 55.4% 72.9% 78.6% Utilization 21, 46, 59] Hospital admission rate (excluding NGCA and including IDPs) (2019) [49] 13.7% 14.3% 17.0% 20.1% PHC HCFs per 100,000 people (excluding NGCA and including IDPs) [10, 21, 46, 1.89 3.02 5.73 4.42 59] PHC HCFs per 1,000 sqkm area (excluding NGCA) [10, 21, 46, 59] 2.49 1.48 4.14 PHC physicians per 1,000 people (excluding NGCA and including IDPs) [10, 21, 46, 0.40 0.38 0.58 0.60 Availability 59] Average number of declarations per PHC doctor (excluding NGCA and including 1489 1459 1264 1319 IDPs) [10, 21, 46, 59] Percent of doctors at retirement age (2019) [65] 31% 32% 26% 25% Total doctors per 1,000 people (excluding NGCA and including IDPs)(2019) [56] 1.94 1.84 2.99 3.07

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Specialists3 per 1,000 people (excluding NGCA and including IDPs) (2019) [56] 1.35 1.27 2.20 2.25 Nurses per 1,000 people (excluding NGCA and including IDPs) (2019) [56] 3.62 3.51 4.03 4.67 Hospital beds per 1,000 people (excluding NGCA and including IDPs) (2019) [49] 5.25 6.84 6.40 6.87 Diagnostic imaging machines (total) per 1 million population (excluding NGCA) [68] 143.2 162.1 183.90 181.6 Fluorographs per 1 million population (excluding NGCA)(2019) [68] 21.9 25.7 32 31.5 Angiographs per 1 million population (excluding NGCA)(2019) [68] 0.9 0 2.90 2.2 Mammographs per 1 million population (excluding NGCA)(2019) [68] 6.4 6.7 5.80 6.2 CT Scanners per 1 million population (excluding NGCA)(2019) [68] 55.9 11.2 20.80 33.7 MRT Machines per 1 million population (excluding NGCA) (2019) [68] 0.9 1.1 0.80 1.5 Ultrasounds per 1 million population (excluding NGCA) (2019) [68] 62.8 80.5 97.10 102.7 Hospital mortality rate – Overall (excluding NGA and including IDPs) (2019) [49] 1.93 1.66 1.77 1.43 Hospital mortality rate – General Therapy Beds (excluding NGA and including 3.06 2.92 1.90 1.68 IDPs) (2019) [49] Hospital mortality rate – Surgery Beds (excluding NGA and including IDPs) (2019) 2.05 1.21 1.17 1.00 [49] Hospital mortality rate – Cardiology Beds (excluding NGA and including IDPs) 2.68 2.04 1.04 1.19 (2019) [49] Hospital mortality rate – Neurology Beds (excluding NGA and including IDPs) 4.02 2.62 1.75 1.84 (2019) [49] Hospital mortality rate – Traumatology Beds (excluding NGA and including IDPs) 0.77 0.57 0.26 0.26 (2019)[49] ALOS in days (excluding NGCA and including IDPs) (2019) [49] 11.4 12.6 11.3 10.6

3 Specialists included in this indicator: rheumatologists, pediatric cardiorheumatologists, cardiologists, gastroenterologists, nephrologists, endocrinologists, allergists, hematologists, infectious diseases, physiotherapists, doctors of functional diagnostics, surgeons, including pediatric surgeons, Cardiovascular surgeons, thoracic surgeons, proctologists surgeons, orthopedists-traumatologists, pediatric orthopedists-traumatologists, urologists, neurosurgeons, anesthesiologists, pediatric anesthesiologists, endoscopists, oncologists, radiologists, dentists, obstetricians and gynecologists, pediatricians, pediatricians-neonatologists, ophthalmologists, otolaryngologists, TB doctors, neurologists, pediatric neurologists, psychiatrists, child psychiatrists, narcologists, psychotherapists, psychologists, dermatovenereologists, pathologists, Eridemiologists, laboratory doctors, doctors in ultrasound diagnostics, and radiologists.

Annex 3. Population Calculation Methodology

Estimation of population, by administrative territories One of the top priorities of the study was to estimate the population in three regions (Donetsk, Luhansk, and Odessa oblasts), as well as the total population of Ukraine. The population size in a given territory is key for the calculation of relative indicators and their subsequent comparison.

The following algorithm was used to estimate the population by territories: 1. Identifying the data source 2. Considering the population living in NGCA 3. Adjusting indicators taking into account the number of internally displaced persons (IDPs)

The source of Ukraine’s population data by territories was the statistical compendium titled "Number of existing population of Ukraine as of January 1, 2020" of the State Statistics Service of Ukraine [87]. Since the last census of Ukraine was conducted in 2001, all demographic indicators are estimations. Estimated population is an approximate number of people living in the country or part of it established without a census. Current estimation of the population as of January 1 is based on the latest census, natural and migratory movements of the population, as well as changes in population due to administrative and territorial changes. These official data are used by all public bodies of Ukraine.

It should be noted that the migratory movement of the population in Ukraine is monitored through the person's registration. As the procedures for changing the registration are complex for many reasons, the number of people in Ukraine who do not actually live at the place of registration is estimated at least at 12% (excluding those with a certificate of internally displaced persons, foreigners, stateless persons and people without any registration at all)[59]. It was also revealed that living not at the place of registration generally did not depend on the region of Ukraine and the locality type (except for Kyiv and Kyiv oblast). Therefore, for the purposes of this study, it was assumed that the number of people living in certain territories but not included in state statistics is equally proportional in all territories of comparison. However, this does not apply to internally displaced persons.

To estimate the population living in the territories controlled by the Government of Ukraine, the relevant tables from the above statistical compendium of the State Statistics Service of Ukraine - Population by regions, rayons, cities, towns (estimated) - were used. In the lists of administrative units of Donetsk and Luhansk oblasts, the territories temporarily not controlled by the Government of Ukraine were identified, according to the Decree of the President of Ukraine as of February 7, 2019 No. 32/2019 «On borders and the list of rayons, cities, towns and villages, parts of their territories temporarily occupied in Donetsk and Luhansk oblasts." The population in the territories controlled and not controlled by the government was estimated separately (Annex 1).

The annexation of Crimea and hostilities in the east of the country led to numerous forced displacements, especially in the early years of the conflict. Since 2017, resettlement from territories not controlled by the Ukrainian government has stabilized somewhat, and the number of IDPs has been about 1.5 million people, with small deviations.

According to the data of the Ministry of Social Policy of Ukraine presented in the report of the International Organization for Migration [10], in April 2020, there were 1,446,881 internally displaced persons (IDPs), i.e., persons who left their homes and moved to another rayon and/or region of Ukraine. Almost half of the registered IDPs were located in the government-controlled territories (GCT) of Donetsk oblast (510,764) and Luhansk oblast (280,437). The areas with the largest numbers of IDPs located farther from these oblasts were Kyiv (159,533) and Kyiv oblast (62,901), Kharkiv oblast (134,100), Dnipropetrovsk oblast (71,171) and Zaporizhzhia oblast (56,017).

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

According to the results of the IOM study, IDPs generally remain in their current place of residence and do not travel further. In February-March 2020, 86% of IDPs surveyed reported staying in their current place of residence for more than three years. Thus, this percentage of the total number of IDPs should be considered as an additional (to the data of the State Statistics Service) part of the existing population of a certain administrative territory.

Thus, taking into account the above arguments, the estimated population for the three regions (Donetsk, Luhansk, Odesa oblasts) and Ukraine as a whole can be represented in the following table. № Indicator Donetsk Luhansk Odessa Ukraine 1. Population as of 4,131,808 2,135,913 2,377,230 41,902,416 January 1, 2020 – State Statistics Service of Ukraine 2. Population living in 2,245,014 1,482,306 0 3,727,320 uncontrolled territories 3. Population living in 1,886,794 653,607 2,377,230 38,175,096 controlled territories (1-2) 4. IDPs registered in an 510,764 280,437 37,487 1,446,881 administrative territory 5. IDPs registered in an 439,257 241,176 32,239 1,244,318 administrative territory and living there for the last three years (86% of 4) 6. Population, including 2,326,051 894,783 2,409,469 39,419,414 IDPs (3+5)

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Note: The above is our best estimate of the population in the GCA of Donetsk and Luhansk, given the current data limitations. However, this is likely not completely accurate because 1) some IDPs may lie about living in the GCA of Donetsk and Luhansk in order to receive benefits (such as pension) and without any method to track IDPs, the only way to verify area of residence is through the IOM surveys; and 2) as a result of the methodology (phone surveys with willing respondents), the IOM surveys are biased to include people who reside in the GCA and therefore, the percentage of IDPs that live in the NGCA or other regions may be higher, decreasing the IDP population estimate in the GCA. Despite this, we did not reduce our population estimate because the GCA of Donetsk and Luhansk may also serve people who come in from the NGCA for care as well as soldiers temporarily in the area. We strongly recommend further surveys and, ideally, a national census in order to validate and refine these population estimates, as well as other critical demographic and health data. Until more robust data can be collected, the above figures are our best estimate of the population in the GCA of Donetsk and Luhansk.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Annex 4. Population Survey Questions

The below tables list the questions/prompts and corresponding answer options (if applicable) for the three population surveys administered via the Premise mobile phone application. Due to dependencies within the surveys, not all survey respondents for each survey answered every question. For example, only respondents who identified as women answered questions about gynecological examinations. To keep the annex concise, this conditional logic is not included in the tables below. HCF Validation Survey:

Question/Prompt (& type of response) Answer Options This task will ask you to visit a health facility Continue and take a photo. (SELECT_ONE) Please follow all local guidance regarding I understand. Continue. COVID-19 protocol (SELECT_ONE) To earn the full amount for this task, you will I understand. Continue. need to provide a photo of the hours of operation, services available, and a service ramp, where available. (SELECT_ONE) Please only complete this task between 9 am I understand. Continue. and 4 pm Kyiv time. (SELECT_ONE) The location on the map indicates the general I understand. Continue. area of the health facility. (SELECT_ONE) The address for the health facility, as shown in I understand. Continue. the title of the task will help guide you to the precise location (SELECT_ONE) Start (CHECK_IN) Have you located the health facility? Yes | Yes, but it has a different name | No (SELECT_ONE) Is the health care facility located at the address Yes | No provided (in the title of the task)? (SELECT_ONE) What is the address of the health care facility? (TEXT) How do you know there is no health facility at Facility does not exist here - unable to locate | this location? (SELECT_MANY) Facility not in this area - told by someone | Wrong location - health facility is nearby, but not within a city block | Other Please take a picture of the front of the health care facility. (PHOTO) Please take a photo of the sign showing the name of the health care facility. (PHOTO) Enter the full name of the health care facility? (TEXT) Mark your location at the entrance to the health care facility? (GEOPOINT) Is this the primary main entrance to the health Yes | No | I don't know care facility? (SELECT_ONE) Is the health care facility operational? Yes, it appears to be an operational health care (SELECT_ONE) facility | No, the building appears to be used for another purpose | No, the building is abandoned | I can't tell

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

End (CHECK_IN) None Are the hours of the health care facility posted Yes | No outside? (SELECT_ONE) Please take a picture of the posted hours. (PHOTO) Is the name of the health care facility visible Yes | No from the outside? (SELECT_ONE) Is there any information about the services Yes | No offered at the HCF visible from the outside? (SELECT_ONE) Please take a picture of the posted information about services. (PHOTO) Which option best describes the condition of Well-maintained, clean, and welcoming | Functional the health care facility, based on what you can but not inviting | Dilapidated and unsafe see from the outside? (SELECT_ONE) Is there a ramp for wheelchairs / strollers, a Yes, there is a ramp | Yes, there is a sign indicating sign indicating accessible entrances (e.g. an accessible entrance | Yes, there is a doorbell for wheelchair access), or a doorbell for accessibility service/access | No, there is no ramp accessibility service/access? (SELECT_MANY) or indication of an accessible entrance Please take a picture of the ramp. (PHOTO) Please take picture of the sign indicating an accessible entrance (PHOTO) Please take picture of a doorbell for accessibility service/access. (PHOTO) When you arrived at the health facility location, Yes | No did you see any signage to direct patients/visitors to the primary entrance? (SELECT_ONE) Take a photo of the sign showing any signage to direct patients/visitors to the primary entrance? (PHOTO)

PHC Survey:

Question/Prompt (& type of response) Answer Options Have you signed a declaration with a primary Yes, with a doctor from a municipal clinic | Yes, care (PHC) doctor for yourself? with a doctor from a private clinic | No, and I do (SELECT_ONE) not plan to get one in the near future | No, but I am planning to get one in the near future Why have you not signed a declaration with a I did not know that I needed to have a declaration PHC doctor? (SELECT_MANY) with a PHC doctor | I do not need a PHC doctor because I am a healthy person | I wanted to sign a declaration, but I do not have a doctor nearby whom I trust | I wanted to sign a declaration, but all the doctors whom I trust refused me | I do not trust PHC doctors | I do not trust electronic medical systems as my health data is not sufficiently protected | I do not want to and will never have a declaration with a PHC doctor | It is too difficult for me to reach the PHC doctor nearby | I do not have enough money to visit the PHC doctor | I haven't had the time to go to the PHC doctor to sign up | Other reason 60

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Why else do you not have a declaration with a primary care doctor? (TEXT) In the past two years, did you interact with Yes | No your PHC doctor? (SELECT_ONE) What is the primary reason(s) for not visiting I did not need to see the PHC doctor and my PHC your PHC doctor during the past two years? doctor did not ask to see me | My PHC doctor (SELECT_MANY) refused to visit me at home | My PHC doctor did not have availability to see me at the facility | I used the Internet and/or family/friends advice instead | I used pharmacists/pharmacy advice instead | I went to a specialized health care provider instead | I did not have time to visit the doctor | It is too difficult for me to reach the PHC doctor | I did not have enough money to visit the PHC doctor | Other reason Why else did you not seek help from your PHC doctor during the past two years? (TEXT) What was the format of your usual interaction Consultation over the phone | Online health with your PHC doctor over the past two resources (messengers, chat-bots, training courses, years? (SELECT_ONE) etc.) | In-person visit to a doctor in a facility | Home visit of a doctor | Other What was the other format of your interaction with your PHC doctor? (TEXT) Does your PHC doctor offer remote Yes | No | I don't know consultations (i.e. over the phone)? (SELECT_ONE) How did you get an appointment with your Through a medical information system or a PHC doctor? (SELECT_MANY) patient's electronic account | By calling my doctor by phone | By calling the reception desk or the hotline of the healthcare facility by phone | By visiting the reception desk | By visiting my doctor | I do not get any prior appointment, I just walk in and wait in a queue | My doctor made the appointment for me | In another way How else did you get an appointment with your PHC doctor? (TEXT) How easy is it to make an appointment with Very difficult | A little difficult | Neither difficult nor your PHC doctor on a scale from 1 (very easy | A little easy | Very easy | I don't know difficult) to 5 (very easy)? (SELECT_ONE) because I've never made an appointment with a PHC doctor How easy is it for you to physically reach the Very difficult | A little difficult | Neither difficult nor location of your PHC doctor on a scale from 1 easy | A little easy | Very easy | I don't know (very difficult) to 5 (very easy)? (SELECT_ONE) because I've never been to a PHC doctor How did you most typically physically reach the I drove | A friend or family member drove me | I location of your PHC doctor over the past two used public transportation | I paid for a private car / years? (SELECT_ONE) taxi to take me | An ambulance brought me | By foot How long did it take you to physically reach the Less than 30 minutes | 30 minutes to 1 hour | 1-2 location of your PHC doctor? (SELECT_ONE) hours | More than 2 hours | I don't know How satisfied were you with the care you Very unsatisfied | Slightly unsatisfied | Neither received from your PHC doctor on a scale satisfied nor unsatisfied | Slightly satisfied | Very from 1 (very unsatisfied) to 5 (very satisfied)? satisfied | I did not receive care from the PHC (SELECT_ONE) doctor

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Did your PHC doctor provide you with No information provided and no questions information about the services provided and answered | Very limited information provided | answer all of your questions? (SELECT_ONE) Some information provided, but not enough | Information provided and some questions answered | All necessary information provided and all questions answered | I do not remember Did the PHC doctor provide you with Smoking / tobacco use | Alcohol consumption | information about any of the following topics Illicit drug use | Cancer screening / Disease related to disease prevention? screening programs | Nutrition / weight (SELECT_MANY) management | Exercise | Vaccinations | None of the above Did you follow the orders, guidance, I followed nothing that my PHC doctor recommendations, referrals, or prescriptions recommended | I slightly followed some of what my given by your PHC doctor? (SELECT_ONE) PHC doctor recommended | I followed some of what my PHC doctor recommended | I followed most of what my PHC doctor recommended | I followed everything my PHC doctor recommended | My PHC doctor did not give me any orders, guidance, recommendations, referrals, or prescriptions Why did you not follow orders fully? I did not understand how to | I did not have enough (SELECT_MANY) money | I did not want to | I did not agree / trust my doctor | I forgot | My health condition changed | Other Did your PHC doctor follow up with you after Yes | No | I don't remember the appointment? (SELECT_ONE) How much do you trust PHC doctors on a Complete distrust | Partial distrust | Neither trust scale from 1 (complete distrust) to 5 (complete nor distrust | Partial trust | Complete trust trust)? (SELECT_ONE) How much are you aware of which PHC Completely unaware | Barely aware | Somewhat services should be provided for free by the aware | Almost completely aware | Completely government? (SELECT_ONE) aware Based on your knowledge, which of the Primary care is unconditionally free of charge for following statements best reflects the cost of any patient | Primary care is free for the patients if primary care to patients? (SELECT_ONE) they are eligible to social, age-related or similar benefits | Primary care is free for the patients if they have signed a declaration with a doctor contracted by the NHSU | Patients have to pay for some components of primary care such as cost of vaccines or tests | Patients have to absorb the full cost of primary care | Hard to say Did you make any payments to your PHC Yes | No | I don't remember doctor or other staff in PHC facilities for the care you received over the past two years? (SELECT_ONE) Why did you pay for the primary health care PHC doctor asked me | Nurse asked me | Other you received? (SELECT_MANY) healthcare staff asked me | Other patients recommended it | My friends or relatives recommended it | It was my own will | Other What other reason did you pay for the primary health care you received? (TEXT) In general, what is your attitude towards Very positive | Positive | Neutral | Negative | Very vaccinations? (SELECT_ONE) negative

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

In the past two years, have you received a flu Yes | No | I don't know vaccination? (SELECT_ONE) Why have you not received a flu vaccination in I don’t believe in vaccinations | The doctor is not the past two years? (SELECT_MANY) convenient or easy to get to | I didn’t know that I needed a flu vaccination | My doctor is against vaccination | There is no vaccine available | I don’t have enough money | COVID- is preventing me from going to get vaccinated | Other What other reasons do you have for not getting the flu vaccination? (TEXT) If you experience symptoms of the flu or Contact my PHC provider | Contact a specialist respiratory infection (i.e., cough, fever, etc.), (i.e. ENT doctor) | Go to the hospital | Go to the how do you seek care? (SELECT_ONE) pharmacy | Treat myself at home Have you taken antibiotics in the past two Yes | No | I don't know years? (SELECT_ONE) How often do you take antibiotics without a Very often | Often | Sometimes | Rarely | Never prescription from a doctor? (SELECT_ONE) Have you needed mental health care in the past Yes | No | I don’t believe in mental health care | two years? (SELECT_ONE) Prefer not to answer If you needed to seek mental health care, PHC doctor | Psychologist | Psychiatrist | Other where is the first place you would go/contact? doctor at a hospital | Pharmacy | Other (SELECT_ONE) Where else would you go/contact to seek mental health care? (TEXT) Did you receive the mental health care that you Yes, fully | Partially | No needed in the past two years? (SELECT_ONE) Why did you not receive the mental health There is no mental health care provider nearby | It care you needed in the past two years? is difficult to get to a mental health care provider | (SELECT_MANY) The mental health care provider is not available or the wait is too long | I do not have enough money to pay for mental health care | I do not trust mental health care providers | My family/friends prevented me from accessing mental health care services | Other What other reasons do you have for not receiving the mental health care you needed? (TEXT) How often do you receive a gynecological More than once per year | Once per year | Once exam? (SELECT_ONE) every two years | Once every three years | Less than once every three years | Prefer not to answer What reasons do you have for not receiving a I don’t know what a gynecological exam is | I didn't gynecological exam more often? know that I needed a gynecological exam | I don’t (SELECT_MANY) know when and how to get a gynecological exam | There are no doctors nearby that give gynecological exams | I do not trust any doctors to give me a gynecological exam | It’s too difficult to get to a doctor who can give me a gynecological exam | I do not have enough money pay for a gynecological exam | I don’t need a gynecological exam because of my age | Other | Prefer not to answer

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

What other reasons do you have for not receiving a gynecological exam more often? (TEXT) Can you provide general information about the Yes | No health care that your child/minor in your guardianship receives (i.e., if they have a doctor and if they are vaccinated)? (SELECT_ONE) Does your child/minor in your guardianship Yes, a family doctor | Yes, a pediatrician | No | I have a family doctor or pediatrician? don't know (SELECT_ONE) Why doesn't your child/minor in your I don’t think he/she needs a pediatrician or family guardianship have a family doctor or doctor | There is no pediatrician or family doctor pediatrician? (SELECT_MANY) nearby whom I trust | All the doctor whom I trust refused us | I do not trust doctors | I do not trust electronic medical systems and my child's health data is not sufficiently protected | It is too difficult to reach the pediatrician or family doctor | I do not have enough money to visit the pediatrician or family doctor | I haven’t had time to go to the doctor to sign up | Other reason What other reasons do you have for not signing up your child/minor with a family doctor or pediatrician? (TEXT) Is your child/minor in your guardianship up-to- Yes | No | I don't know date with vaccinations (according to the vaccination schedule)? (SELECT_ONE) Why isn't your child/minor up-to-date with I don’t believe that vaccinations work | I am afraid vaccinations? (SELECT_MANY) of the side effects of vaccinations | My child is ineligible for vaccinations due to illness | I haven’t had time to take my child to be vaccinated | I don’t know which vaccinations my child needs | COVID- is preventing me from taking my child to get vaccinations | I don't trust pharmaceutical developers | The PHC doctor did not explain vaccinations well or why my child needs them | Vaccines were not available | Other What other reasons do you have for not being getting your child/minor vaccinated? (TEXT)

SHC Survey:

Question/Prompt (& type of response) Answer Options Have you been to the hospital or a specialized Yes | No health care provider in the past two years? (SELECT_ONE) Where did you go for your most recent Municipal / Rayon facility | Oblast facility | National- hospital / specialized care visit? (SELECT_ONE) level facility | Private facility | Departmental facility (railway, police hospital, etc.) | Other Who referred you to the specialized health Self-referral | Emergency care doctor | PHC doctor care provider? (SELECT_ONE) | Follow-up hospitalization | Other Who else referred you to the specialized health care provider? (TEXT)

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

How did you physically reach the hospital / I drove | A friend or family member drove me | I specialized health care provider? used public transportation | I paid for a private car / (SELECT_ONE) taxi to take me | An ambulance brought me | By foot How long did it take you to physically reach the Less than 30 minutes | 30 minutes to 1 hour | 1 – 2 hospital / specialized health care provider? hours | More than 2 hours | I don't know (SELECT_ONE) How satisfied were you with the Very unsatisfied | Unsatisfied | Neither satisfied nor specialized/hospital care you received on a unsatisfied | Satisfied | Very satisfied scale from 1 (very unsatisfied) to 5 (very satisfied)? (SELECT_ONE) Why have you not been to the hospital or a I have not needed hospital/specialized health care | specialized health care provider in the past two It is too difficult to reach the hospital / specialized years? (SELECT_ONE) care provider | I do not have enough money to pay for specialized care | I do not trust doctors | Other What other reason do you have for not going to the hospital or specialized health care provider in the past two years? (TEXT) How easy is it for you to physically reach the Very difficult | A little difficult | Neither difficult nor location of the nearest hospital on a scale from easy | A little easy | Very easy | I don't know 1 (very difficult) to 5 (very easy)? (SELECT_ONE) Are all the specialized health care services you No health care services are provided at the nearest need (or would need in the future) provided at hospital | Only one service is provided at the the nearest hospital? (SELECT_ONE) nearest hospital | Some of the services I need are provided at the nearest hospital | Most of the services I need are provided at the nearest hospital | All of the services I need are provided at the nearest hospital | I don't know How much do you trust doctors in the hospital Complete distrust | Partial distrust | Neither trust on a scale from 1 (complete distrust) to 5 nor distrust | Partial trust | Complete trust (complete trust)? (SELECT_ONE) How much do you trust doctors from private Complete distrust | Partial distrust | Neither trust health care facilities on a scale from 1 nor distrust | Partial trust | Complete trust (complete distrust) to 5 (complete trust)? (SELECT_ONE) How much are you aware of which specialized Completely unaware | Barely aware | Somewhat health care services should be provided for free aware | Almost completely aware | Completely by the government? (SELECT_ONE) aware Based on your knowledge, are patients eligible No, they have to pay for any type of specialized to get specialized care for free after the health care in any case | Yes, if they have a referral from a care reform? (SELECT_MANY) primary care doctor and chose a facility that has a contract with the NHSU for the provision of the type of care they seek | Yes, if they are in a condition that endangers their life or health or the life or health of others | Yes, all specialized care in Ukraine is free for patients | Hard to say How much do you trust the ambulance system Complete distrust | Partial distrust | Neither trust on a scale from 1 (complete distrust) to 5 nor distrust | Partial trust | Complete trust (complete trust)? (SELECT_ONE) Have you sought health care services in other Yes | No oblasts (outside of where you live) in the past two years? (SELECT_ONE)

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Why did you seek health care services in other There was higher quality medical care in other oblasts? (SELECT_MANY) oblasts | I was referred/recommended to visit a particular doctor | It was easier to travel to another oblast | There are no relevant health services in my oblast | Health care delivery conditions (i.e., premises) are worse in my oblast | Health care costs are higher in my oblast | Other What other reason do you have for seeking health care services in other oblasts? (TEXT) In the past year, have you crossed the contact Yes | No line into the nongovernment-controlled area to receive health care services? (SELECT_ONE) What health care services did you receive in Primary health care services | Specialized health the nongovernment-controlled area? care services | Mental health care | Other (SELECT_MANY) What specialized health care services did you Oncology (cancer) care | Cardiac (heart) care | receive in the nongovernment-controlled area? Pulmonary (lung) care | Neurology (brain) care | (SELECT_MANY) Orthopedic (bone) care | Ophthalmology (vision) care | Ear, nose, and throat (ENT) care | Dermatology (skin) care | Dentistry | Other specialized care What other health care services did you receive in the nongovernment-controlled area? (TEXT) Why did you cross the contact line into the There was a higher quality of medical care in the nongovernment-controlled area to receive nongovernment-controlled area | It was easier to health care services? (SELECT_MANY) travel to the nongovernment-controlled area than to access a provider in the government-controlled area | There are no relevant health services in the government-controlled area | Health care delivery conditions (i.e., premises) are worse in the government-controlled area | Health care costs are higher in the government-controlled area | Other Why else did you cross the contact line into the nongovernment-controlled area to receive health care services? (TEXT) In the past year, have you gone to another Yes | No country to receive health care services? (SELECT_ONE) What health care services did you receive in Primary health care services | Specialized health another country? (SELECT_MANY) care services | Mental health care | Other What specialized health care services did you Oncology (cancer) care | Cardiac (heart) care | receive in another country? (SELECT_MANY) Pulmonary (lung) care | Neurology (brain) care | Orthopedic (bone) care | Ophthalmology (vision) care | Ear, nose, and throat (ENT) care | Dermatology (skin) care | Dentistry | Other specialized care What other health care services did you receive in another country? (TEXT) Why did you go to another country to receive For a higher quality of medical care | It was easier health care services? (SELECT_MANY) to travel to another country | There are no relevant health services in my country | Health care delivery conditions (i.e., premises) are worse in my

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

country | Health care costs are higher in my country | Other Why else did you go to another country to receive health care services? (TEXT)

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Annex 5. Consultations with Partners

To validate our assessment findings and recommendations, we reached out to all known partners and donor organizations working in the Donetsk/Luhansk regions and/or in work related to health care accessibility. We then scheduled seven (7) expert interviews with the partners that responded to our request and agreed to participate. The interviews, conducted between May 13 and 21, 2021, included the USAID Economic Resilience Activity, the Health Cluster Coordinator from the WHO, the USAID Ukraine Confidence Building Initiative, ACTED IMPACT Initiative, GIZ Perspectives for Eastern Ukraine, the USAID Decentralization Offering Better Results and Efficiency project, and Medicos del Mundo. All experts were invited to participate via email with a description of the purpose of the interview and a draft presentation summarizing key findings and recommendations of the assessment. The interviews were conducted online in Zoom, and after participants provided verbal informed consent, the interview was digitally recorded. All non-native English-speaking experts could use either Ukrainian or Russian languages, with simultaneous translation provided. The duration of the interviews was approximately 60 minutes and no remuneration was provided. The agenda and expert interview script are below.

AGENDA 0:00-0:10 – Welcome, Quick Introductions, & Opening Script (English) 0:10-0:20 – Presentation of Findings/Barriers (English) 0:20-0:35 – Facilitated Discussion on Findings/Barriers (Ukrainian) 0:35-0:40 – Presentation of Recommendations (English) 0:40-0:49 – Facilitated Discussion on Recommendations (Ukrainian) 0:49-0:50 – Closing Script (English)

OPENING SCRIPT Welcome: Hello everyone! Thank you very much for joining us today. We appreciate you taking the time to share your feedback on our assessment of patient barriers in Eastern Ukraine. Before we get started, I just wanted to let you know that we have our fantastic translator, Vasylyna, on the line, providing simultaneous translation between English and Ukrainian so that people can speak whichever language they are most comfortable with. Please select your language in the Zoom menu at the bottom of your screen to hear her translation. Intros: My name is Betsy Hinchey and the Project Manager of the USAID Health Reform Support project. Let’s very quickly go around with introductions… Purpose: The purpose of this meeting is to hear from each of you your feedback and discuss any modifications and elaborations we can add to our report based off your on-the-ground experience related to health care in Donetsk and Luhansk. For the first half of the meeting, I will share an overview of our assessment and findings on patient barriers and then Anna will facilitate a discussion with several open-ended questions to gather your thoughts and feedback. Then, I will share our ideas for recommendations to improve accessibility of health care and again, Anna will facilitate a brief discussion. For this meeting, we are hoping to focus discussion around your experiences, rather than the 68

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

methodology, data, or sources that we’ve used in our report. However, we’d be happy to answer questions and share additional information via email or in follow up meetings if you’d like. Because we are so limited on time, Anna may sometimes encourage us to move along to keep the discussion on schedule; thank you in advance for your understanding with this. Confidentiality: A quick note on confidentiality -- although we plan to use your feedback and shared experiences to strengthen our findings and recommendations in our report, we will not attribute any comments or experiences that you share with us directly to you or your organization. We’ll be taking notes, but they will be transcribed anonymously and will be used to shape the development of our recommendations. We’d also like to record this meeting, just to help us internally with our notes; the recording will not be shared with anyone outside of HRS and it will be deleted once we complete our notes. Additionally, again, our report will not contain any information that links your name or organization to specific statements. Does anyone have any objections to us recording this meeting? If not, I will begin recording now… Wrap Up: Does anyone have any questions so far? If not, I’ll get started.

QUESTIONS FOLLOWING BARRIERS PRESENTATION (Timing – 3 minutes per overall discussion and 3 minutes per each of 5 tiers = around 15-18 min) Overall: What do you think? (looking at this graph overall or maybe you would like to comment on some specific tier?) Taking into account your professional experience and knowledge are there any additional patient barriers (that you think we missed)? Questions for each tier: What do you think? Can you elaborate on your experiences? Probes: Can you give me an example? Are there anything you would like to change/add? What and why (if we have time)?

QUESTIONS FOLLOWING RECOMMENDATIONS PRESENTATION Timing – 10 min Overall: What do you think? Probes: What else would you recommend? Why so? Can you give me an example? What do you mean when…?

CLOSING SCRIPT Thank You: Unfortunately, that’s all the time we have for today! Thank you for your participation in this meeting and your feedback! It’s very valuable to us. Confidentiality: Again, as a reminder, we will use your feedback and comments to strengthen our report, but we will not be attributing any of your comments directly to you or your organization.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

Next Steps: If you have any additional questions or comments that we didn’t have time to discuss today, please email me! We can communicate over email or can set up another time for us to continue a discussion. We will also share the final report with you and the wider partner/counterpart community in June as well as host a large meeting to present the complete findings and recommendations, so please be on the lookout for this invitation next month. Bye: Have a great rest of your day! Thank you again!

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

REFERENCES 1. Two Ukrainian soldiers killed in eastern Ukraine: military, P. Polityuk, Editor. APRIL 6, 2021, Reuters, Ukraine. 2. COUNTRY DEVELOPMENT COOPERATION STRATEGY - UKRAINE, U. Ukraine, Editor. January 09, 2019 - January 09, 2024, Last updated: February 24, 2021. 3. Levesque, J., Harris, M.F. & Russell, G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health 12, 18 (2013). https://doi.org/10.1186/1475-9276-12-18. . 4. Donabedian, A., Evaluating the quality of medical care. , ed. T.M.m.f. quarterly. 1966. 166-206. 5. Kruk, M.E., et al., Measuring quality of health-care services: what is known and where are the gaps? . Bulletin of the World Health Organization, 2017. 95(6): p. p. 389. 6. Akachi, Y.a.M.E.K., Quality of care: measuring a neglected driver of improved. Bulletin of the World Health Organization health. 95, 2017. 6(465). 7. Institute of Medicine, Crossing the Quality Chasm: A New Health System for the 21st Century. , N.A.P.U.C.b.t.N.A.o.S.A.r.r.W. (DC). Editor. 2001. 8. Donabedian, A., The Quality of Care: How Can It Be Assessed? . JAMA, 1988. 260(12): p. 1743-1748. 9. Чисельність наявного населення - дані зі статистичного довідника «Населення України» за 2011-2020 роки (станом на 01 січня). Табл. 1.8. Чисельність наявного населення по регіонах (за оцінкою) станом на 1 січня (відповідного року).У роках 2011-2013 без урахування АР Крим та м. Севастополь. Донецька обл. та Луганська обл. з окупованими територіями. . 10. International Organisation of Migration. March 2020. National Monitoring System Report on the Situation of Internally Displaced Persons. http://ukraine.iom.int/sites/default/files/nms_round_16_ukr_web.pdf 11. International Ethical Guidelines for Health-related Research Involving Humans, P.b.t.C.f.I.O.o.M.S.C.i.c.w.t.W.H.O. (WHO), Editor. 2016. 12. HUMANITARIAN CONTEXT. 2019; Available from: https://www.medicosdelmundo.org/que-hacemos/europa/ucrania. 13. HUMANITARIAN RESPONSE PLAN UKRAINE Revised Requirements due to the COVID-19 Pandemic, U.O.f.t.C.o.H.A. (OCHA), Editor. 2020. 14. Shepotylo, M.O.a.O., Conflict, financial well-being, and health: the case of RussianUkrainian hybrid war. Economic Systems, 2018. 44(1). 15. RREACH, Government Controlled Areas of Donetsk and Luhansk, UKRAINE: COVID-19 Knowledge, Attitudes, and Practices Assessment. Round 3: November 2020 2020.

Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

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Assessment of Patient Barriers in Conflict-Impacted Areas of Eastern Ukraine

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