Global development of children’s palliative care: the picture in 2017

Background: The growing interest in tracking the global development of palliative care provision is not matched by research on the development of palliative care services specifically for children. Yet it is estimated that worldwide, 21 million children annually could benefit from the provision of palliative care. We report on a global study of children’s palliative care development and offer suggestions for further improvement in design and method. Methods: Primary data on the level of children’s palliative care development in 2017 was collected from in-country experts through a specific question in an online questionnaire that sought to measure the overall level of palliative care provision globally. Countries were assigned to one of six categories on the basis of the responses obtained. Conflicting responses from the same country were resolved with reference to a hierarchy of preferred respondents. Results: Our data allowed the categorisation of 113 countries, accounting for 65% of the global population aged under 20. Number of countries (% of global child population) in each category were as follows: 1) no known activity, 21 (4%); 2) capacity-building, 16 (24%); 3a) isolated provision, 55 (30%); 3b) generalized provision, 5 (1%); 4a) preliminary integration into mainstream provision, 14 (8%); 4b) advanced integration, 7 (2%). Conclusions: Children’s palliative care at the highest level of provision is available in just 21 countries, accounting for fewer than 10% of the global population aged under 20. It is concentrated in high income settings, whilst the majority of the global need for such care is in low- and middle-income countries. Our study is a useful tool for global advocacy relating to children’s palliative care and a stimulus for the creation of improved indicators to measure it at the country level

Palliative care coverage across European National Health Systems: proposal of a synthetic indicator

Background: The coverage of palliative care (PC) may be understood as a country’s capacity to offer prevention and relief from serious health-related suffering in relation to an existing need. The aim of this study is to estimate European countries´ coverage capacities. Method: Secondary analysis of three indicators, including the number of specialized services (SSPC), integration capacity scores (ICS) and the PC needs. By means of a K-medians clustering supervised algorithm, three coverage profiles were obtained: (1) Advanced: countries with high ICS and SSPC, and low PC needs; (2) Limited: countries with low ICS and SSPC, and low PC needs; and (3) Low: countries with low ICS and SSPC and high PC needs. Results: On average, the ratio of specialized services per population was 0.79 per 100,000 inhabitants, the average ICS was 19.62 and the average number of deceased patients with SHS per 100,000 inhabitants was 5.69. Twenty countries (41%) reached an advanced coverage profile. Nine countries (18%) demonstrated a limited coverage profile; and 20 countries (41%) fell under a low-coverage capacity. Conclusion: The level of palliative care coverage across Europe shows that 59% of European countries have either limited or very low availability of PC resources as regards their palliative care needs

Development of an atlas of palliative care in the Eastern Mediterranean Region through a stakeholder participative process

Background: The increasing number of people experiencing serious health-related suffering due to severe illness is an urgent issue in the WHO Eastern Mediterranean Region (EMR). Although palliative care can mitigate much of this suffering, its current development and indicators to measure progress remain unknown. Aims: To describe the development of the Atlas of palliative care in the Eastern Mediterranean Region 2021. Methods: Recently, the WHO Regional Office for the Eastern Mediterranean, together with a network of palliative care experts, identified the best indicators and collected data across the Region. These indicators include national palliative care strategies, number of specialized palliative care services per population, inclusion of palliative care in the health benefits package and national health budget, and the use of pain medication. These and other useful information form the Atlas of palliative care in the Eastern Mediterranean Region 2021. Results: The Atlas shows that provision of specialized palliative care services and pain medication in the Region is low. Several of the indicators suitable to the region are new and include the level of public awareness of palliative care, inclusion of palliative care in health insurance plans, availability of centres of excellence for palliative clinical care, and availability of grants to finance palliative care research. Conclusion: Adoption of favourable policies, educational initiatives, and the involvement of stakeholders, represent an opportunity for future development of palliative care in the EMR

Region-specific macroindicators on palliative care development in the Eastern Mediterranean region: a Delphi study

Background: The World Health Organization Office for the Eastern Mediterranean Region (WHO/EMRO), and the recently created palliative care experts network for the Eastern Mediterranean Region (EMR), decided to develop region-specific indicators for monitoring national palliative care development in the Region. Aims: To identify relevant and feasible macro-indicators for palliative care development for the EMR. Methods: Palliative care experts from the EMR were nominated and invited to complete a 2-round Delphi study to rate macro-indicators from previous studies and propose new ones based on the EMR regional characteristics. All indicators were assessed according to regional relevance (R) and feasibility (F). A content validity index (CVI) was calculated. Indicators with CVI ≥ 0.7/1, and scoring ≥ 7/9 for the R and F averages were selected. Results: Twelve of the 22 countries in the Region were represented in the study. In the first round, 11 indicators were selected and 13 new ones proposed. In the second round, 15 indicators matched R, F and CVI criteria. Top-scored indicators were: existence of a current national palliative care strategy (R = 8, F = 8, CVI = 1); ratio of specialized services (for adults and children) in the country per population (R = 8, F = 7, CVI = 1); allocation of funds for palliative care in the national health budget by the Ministry of Health or equivalent government agency (R = 8, F = 6, CVI = 1); education for prequalification of doctors/nurses (R = 8, F = 8, CVI = 0.9); and availability of morphine and other strong opioids (R =8, F = 8, CVI= 0.9). Conclusion: A baseline set of 15 region-specific indicators for measuring the development of palliative care were validated by experts in the EMR

Palliative care in the Eastern Mediterranean: comparative analysis using specific indicators

Background Monitoring the development of palliative care (PC) illustrates the capacity of health systems to respond to the needs of people experiencing serious health-related suffering. Aim To analyse comparatively the situation of PC in the countries of the Easter Mediterranean region using context-specific indicators. Method An online questionnaire with 15 context-specific PC indicators investigating service provision, use of medicines, policy, education, and vitality was designed. Authors Institution 1 nominated in-country experts to complete the survey. Data were analysed using a comparative description of indicators per domain and a multivariate analysis. Results In-country experts were identified in 17/22 countries. 12/17 contributed to the survey. In total, 117 specialized PC services were identified. Specialized services per population ranges from 0.09 per 100,000 inhabitants in Lebanon and Saudi Arabia, Qatar and Kuwait; to zero services in the Occupied Palestinian Territories. On average, opioid consumption was 2.40 mg/capita/year. National PC strategies were reported in nine countries. In six countries, PC is officially accredited either as a specialty or sub-specialty, and PC mandatory courses are implemented in 36% of medical schools and 46% of nursing schools. National PC associations were documented in six countries. A higher pattern of development was identified in Jordan, Kuwait, Saudi Arabia, Oman, Lebanon, Qatar. Conclusions Despite a higher development in the Arabian Peninsula, the region is characterised by a very low provision of specialized PC services and opioid consumption. Policy improvements represent an opportunity to improve access to PC

Population's potential accessibility to specialized palliative care services: a comparative study in three European countries

Background: Palliative care is a priority for health systems worldwide, yet equity in access remains unknown. To shed light on this issue, this study compares populations’ driving time to specialized palliative care services in three countries: Ireland, Spain, and Switzerland. Methods: Network analysis of the population’s driving time to services according to geolocated palliative care services using Geographical Information System (GIS). Percentage of the population living within a 30-min driving time, between 30 and 60 minutes, and over 60 min were calculated. Results: The percentage of the population living less than thirty minutes away from the nearest palliative care provider varies among Ireland (84%), Spain (79%), and Switzerland (95%). Percentages of the population over an hour away from services were 1.87% in Spain, 0.58% in Ireland, and 0.51% in Switzerland. Conclusion: Inequities in access to specialized palliative care are noticeable amongst countries, with implications also at the sub-national level

Global development of children’s palliative care: the picture in 2017

Background: The growing interest in tracking the global development of palliative care provision is not matched by research on the development of palliative care services specifically for children. Yet it is estimated that worldwide, 21 million children annually could benefit from the provision of palliative care. We report on a global study of children’s palliative care development and offer suggestions for further improvement in design and method. Methods: Primary data on the level of children’s palliative care development in 2017 was collected from in-country experts through a specific question in an online questionnaire that sought to measure the overall level of palliative care provision globally. Countries were assigned to one of six categories on the basis of the responses obtained. Conflicting responses from the same country were resolved with reference to a hierarchy of preferred respondents. Results: Our data allowed the categorisation of 113 countries, accounting for 65% of the global population aged under 20. Number of countries (% of global child population) in each category were as follows: 1) no known activity, 21 (4%); 2) capacity-building, 16 (24%); 3a) isolated provision, 55 (30%); 3b) generalized provision, 5 (1%); 4a) preliminary integration into mainstream provision, 14 (8%); 4b) advanced integration, 7 (2%). Conclusions: Children’s palliative care at the highest level of provision is available in just 21 countries, accounting for fewer than 10% of the global population aged under 20. It is concentrated in high income settings, whilst the majority of the global need for such care is in low- and middle-income countries. Our study is a useful tool for global advocacy relating to children’s palliative care and a stimulus for the creation of improved indicators to measure it at the country level

Palliative care integration indicators: an European regional analysis

Objective To estimate the capacity of European countries to integrate palliative care (PC) into their health systems through PC service provision for patients of all ages, with different care needs and diseases, in various settings and by a range of providers. Methods Secondary analysis of survey data from 51 countries with 22 indicators explored the integration of available PC resources for children, for patients of all ages, at the primary care level, for oncology and cardiac patients, and in long-term care facilities. We also measured volunteer participation. Results were quantified, converted into weighted subscores by area and combined into a single ‘Integration Capacity Score (ICS)’ for each country. Results Thirty-eight countries reported 543 specialised paediatric PC services. One-third of all surveyed countries reported 20% or more of patients with PC needs at the primary care level. Twenty-four countries have a total of 155 designated centres that integrate oncology and PC. Eight countries were pioneering cardiology services that integrate PC. Eight reported a volunteer workforce of over 1000 and 12 had policies regulating PC provision and interventions in long-term care facilities. Across all indicators, 39 countries (76%) score from low to very low integration capacity, 8 (16%) score at an intermediate level, and 4 (8%; the Netherlands, UK, Germany and Switzerland) report a high-level integration of PC into their health systems. Conclusion Variable progress according to these indicators shows that most European countries are still in the process of integrating PC into their health systems

Palliative care coverage across European National Health Systems: proposal of a synthetic indicator

Background: The coverage of palliative care (PC) may be understood as a country’s capacity to offer prevention and relief from serious health-related suffering in relation to an existing need. The aim of this study is to estimate European countries´ coverage capacities. Method: Secondary analysis of three indicators, including the number of specialized services (SSPC), integration capacity scores (ICS) and the PC needs. By means of a K-medians clustering supervised algorithm, three coverage profiles were obtained: (1) Advanced: countries with high ICS and SSPC, and low PC needs; (2) Limited: countries with low ICS and SSPC, and low PC needs; and (3) Low: countries with low ICS and SSPC and high PC needs. Results: On average, the ratio of specialized services per population was 0.79 per 100,000 inhabitants, the average ICS was 19.62 and the average number of deceased patients with SHS per 100,000 inhabitants was 5.69. Twenty countries (41%) reached an advanced coverage profile. Nine countries (18%) demonstrated a limited coverage profile; and 20 countries (41%) fell under a low-coverage capacity. Conclusion: The level of palliative care coverage across Europe shows that 59% of European countries have either limited or very low availability of PC resources as regards their palliative care needs

Development of an atlas of palliative care in the Eastern Mediterranean Region through a stakeholder participative process

Background: The increasing number of people experiencing serious health-related suffering due to severe illness is an urgent issue in the WHO Eastern Mediterranean Region (EMR). Although palliative care can mitigate much of this suffering, its current development and indicators to measure progress remain unknown. Aims: To describe the development of the Atlas of palliative care in the Eastern Mediterranean Region 2021. Methods: Recently, the WHO Regional Office for the Eastern Mediterranean, together with a network of palliative care experts, identified the best indicators and collected data across the Region. These indicators include national palliative care strategies, number of specialized palliative care services per population, inclusion of palliative care in the health benefits package and national health budget, and the use of pain medication. These and other useful information form the Atlas of palliative care in the Eastern Mediterranean Region 2021. Results: The Atlas shows that provision of specialized palliative care services and pain medication in the Region is low. Several of the indicators suitable to the region are new and include the level of public awareness of palliative care, inclusion of palliative care in health insurance plans, availability of centres of excellence for palliative clinical care, and availability of grants to finance palliative care research. Conclusion: Adoption of favourable policies, educational initiatives, and the involvement of stakeholders, represent an opportunity for future development of palliative care in the EMR