Recalibrating the ‘world map’ of palliative care development

Abstract

Background: Despite growing interest from policy makers, researchers and activists in the global development of palliative care, there is still little science to underpin it. This study presents the methods deployed in the creation of a ‘world map’ of palliative care development. Building on two previous iterations, with improved rigour and taking into account reviewers’ feedback, the aim of this recalibrated version of the study is to determine the level of palliative care development in 198 United Nations recognised countries in 2017, whilst ensuring comparability with previous versions. We present methods of data collection and analysis. Methods and analysis: Primary data on the level of palliative care development in 2017 was collected from in-country experts through an online questionnaire and, where required, supplemented by published documentary sources and grey literature. Data relating to the total population of each country as well as per capita opioid consumption were derived from independent sources. Data analysis was conducted according to a new scoring system and algorithm developed by the research team. Ethics and dissemination: The study was approved by the University of Glasgow College of Social Sciences Research Ethics Committee. Findings of the study will be disseminated in peer-reviewed journals, as a contribution to the second edition of the Global Atlas of Palliative Care at the End-of-Life, and via social media, including the Glasgow End of Life Studies Group blog and the project website. Limitations of the study: There are potential biases associated with self-reporting by key in-country experts. In some countries, the identified key expert failed to complete the questionnaire in whole or part and data limitations were potentially compounded by language restrictions, as questionnaires were available only in three European languages. The study relied in part on data from independent sources, the accuracy of these data could not be verified.

Estimating the Number of Patients Receiving Specialized Palliative Care Globally in 2017

“…In 2017, 1.49 million beneficiaries receive one or more days of hospice care provided by 4515 certified care providers in the United States or 330 patients per service. 10 Based on this and eight other high-income countries surveyed, which had similar findings, each service provider served an average of 324 patients that year. Combining all the regions and groups shows significant disparities in access to palliative care both by region and income group.…”

“…The methods for the mapping study have been previously published. 10 An online survey of experts in 198 countries generated 2017 data on 10 indicators of palliative care provision, linked to six categories of development. Factor analysis and discriminant analysis showed the validity of the categorization.…”

Mapping Levels of Palliative Care Development in 198 Countries: The Situation in 2017

“…An open-access protocol 14 contains a full description of our methods, design, use of indicators, data collection, analysis, and how these have been improved over previous iterations of the study, taking into account of published commentary about limitations of the method. 15,16…”

“…We describe these limitations and the improvements in detail in the study protocol. 14 There is a debate in the literature 7,14 about the merits of using palliative care specialists or government sources to obtain the kind of data we report here. Both have their limitations.…”

Palliative Care in Public Policy: Results from a Global Survey

“…Nevertheless, the method still has certain limitations and we have described these elsewhere. 10 More specifically, for the items described here, we encountered some practical limitations in assessing measures relating to policy. First, our findings on the various policy-related indicators have not been verified with documentary sources.…”