EDITOR’S CHOICE POST . . .
Lieve Van den Block, MSc, PhD, Professor of Aging and Palliative Care Research, VUB-UGhent End-of-Life Care Research Group, Department of Family Medicine and Chronic Care, Department of Clinical Sciences, Vrije Universiteit Brussel (VUB), Belgium, explains the background to a longer article selected as ‘Editor’s Choice’ in the October 2018 issue of Palliative Medicine.
Prof Lieve Van den Block
In a time of ‘big data’, what can be the additional value of general practitioners (GPs) filling in questionnaires about the care delivered to their patients at the end of their lives? The EURO SENTIMELC study has been around for a long time. I first published with these data back in 2007 as part of my PhD using data collected by ‘Sentinel GPs’ in Belgium. I also published one of my very first articles using these data in JAMA;1 as a junior researcher in the field – I was so thrilled.
After that, a number of other countries joined the ‘Sentinel’ initiative and the EURO SENTIMELC study was born.2 The abbreviation stands for European Sentinel Networks Monitoring End-of-Life Care. Sentinel Networks are networks of practices or community based physicians who monitor one, several or an exhaustive list of health problems on a regular or continuing basis. The information from these practices is used to monitor the health of the entire population. It has proved to be a reliable surveillance system for a wide variety of health-related epidemiological data, e.g. on diabetes, stroke, cancer, accidents, and, of course, on end-of-life and palliative care.
Even though these Sentinel Networks started more than a decade ago with registering end- of-life data, some are still actively collecting data now, after so many years. So why are these registrations of added value? Why do GPs still engage in this time-consuming activity (some even still by paper and pencil!) when a lot of ‘data’ can be extracted from medical files or is routine collected for health insurance purposes? Where do they see added value?
Arguably, a number of important elements of care are not easily drawn from existing data or electronic medical files; it is there that the added value of these data collections lay. In the beginning of the EURO SENTIMELC work, we mainly focused on care settings and care settings transitions, to add to the existing literature on place of death data using death certificates. Some important insights included the high frequency of transitions to a wide range of settings and the exponential rise at the very end of life, in particular for people residing at home, but also the fact that these transitions were relatively often requested by patients and/or families.3 While place of care data are now better extractable from insurance claims data, the networks have identified another highly relevant focus that is not being measured anywhere else, i.e. the quality of end-of-life care in primary care using a core set of quality indicators.
My co-authors and I are very proud that our new paper‘Differences in primary palliative care between people with organ failure and people with cancer: an international mortality follow-back study using quality indicators’ was selected as the ‘Editor’s choice’ for the October 2018 issue of Palliative Medicine.4 The paper outlines and compares the quality of primary palliative care in Belgium, the Netherlands, Italy and Spain using a set of quality indicators evaluating eight domains relevant to palliative care, i.e. pain measurement, acceptance of the approaching end of life, communication about disease-related topics with patient and next-of-kin; multidisciplinary consultations; involvement of specialized palliative care services; place of death; and bereavement counselling. 
Using radar charts (see example chart pictured), we tried to visually present the data in an easily graspable way for clinicians and researchers.
We concluded that people who died of organ failure (cardiovascular disease excluding cerebrovascular accidents, or respiratory disease) are at risk of receiving lower quality palliative care than people who died of cancer, but differences vary considerably per country. Because of such intercountry variations, every country should probably identify their own most important priorities for improving their primary palliative care for different patient groups.
Happy reading and please do email us here if you would like to set up analogous studies in your country; our questionnaires and data are open access.
More about the author …
Lieve Van den Block is Chair of the Aging and Palliative Care Research Programme at the VUB-U-Gent End-of-Life Care Research Group in Brussels, Belgium, and coordinator of the EURO Sentimelc study.
References
- Van den Block L, Deschepper R, Bilsen J, Van Casteren V, Deliens L. Transitions between care settings at the end of life in Belgium. JAMA 2007; 298: 1638-9.
- Van den Block L, Onwuteaka-Philipsen B, Meeussen K, et al. Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe. BMC Fam Pract 2013; 14: 73.
- Van den Block L, Pivodic L, Pardon K, et al. Transitions between health care settings in the final three months of life in four EU countries. Eur J Public Health 2015; 25: 569-75.
- Penders YW, Onwuteaka-Philipsen B, Moreels S, et al. Differences in primary palliative care between people with organ failure and people with cancer: An international mortality follow-back study using quality indicators. Palliat Med 2018; 32: 1498-508.
Links
- End-of-Life Care Research Group.
- Follow us on Twitter @EoLC_research
- Read earlier Editor’s Choice posts on the EAPC blog.
Read the full article in Palliative Medicine
This post relates to the longer article, ‘Differences in primary palliative care between people with organ failure and people with cancer: an international mortality follow-back study using quality indicators’ by Penders YW, Onwuteaka-Philipsen B, Moreels S,Donker GA, Miccinesi G, Alonso TV, Deliens Land Van den Block L., published in Palliative Medicine 2018 Volume: 32 (9) issue: 1498-1508. Article first published online: July 30, 2018; Issue published: October 1, 2018. https://doi.org/10.1177/0269216318790386
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