Exciting news – but valid for my own patients?

Dagny Faksvåg Haugen, Lead Consultant and Head of Centre, Regional Centre of Excellence for Palliative Care, Western Norway, Haukeland University Hospital, Bergen, Norway, and Senior Advisor, European Palliative Care Research Centre, Faculty of Medicine, Norwegian University of Science and Technology, Trondheim, Norway.

Dagny Faksvåg Haugen

Dagny Faksvåg Haugen

Have you ever had such thoughts after having read a research report in Palliative Medicine or another palliative care journal?  You are enthusiastic about the new findings, but have this nagging feeling that they may not apply to the patients at your own workplace.

If you have ever felt like this, you are not alone. Palliative care populations are not the same all over. In fact, they may be very different. Age, diagnosis, functional status, symptom profile, and comorbidity may differ, as well as the patient’s life expectancy.

This variation in patient characteristics means that we need to know quite a few details about the study population to be able to judge if the results may be generalised for other settings – for our own patients. Unfortunately, this information has often not been provided in research reports. A recent literature review of randomised controlled trials in patients with advanced cancer showed that only gender, age, and diagnosis were consistently reported in the articles.1 Even performance status, which has important implications for treatment choices and decision making, was only reported in less than half of the cases. This shows a real need for a more standardised description of study samples in palliative care.

A newly published article in Palliative Medicine online presents the first internationally developed dataset to describe a palliative care cancer population.2 The work was performed as an extension of the project PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-Life Care) and in cooperation with the European Association for Palliative Care (EAPC). By means of an international Delphi study, Katrin Sigurdardottir and co-workers managed to obtain consensus on a set of variables for reporting population characteristics and biomedical variables in palliative care cancer studies. This dataset has the potential to improve research reporting and make it easier for you and me to judge the relevance of published studies for our own practice.

The new EAPC Basic Dataset is readily accessible and we very much hope that it will  be adopted by all researchers in cancer palliative care. It needs to be considered already when planning a clinical study. And why not implement the dataset in daily clinical practice? You might not know the details of the patient sample in a published report – but are you able to give a detailed description of your own patient population? The dataset may not only be of help to evaluate the work of others, but to understand and document important aspects of your own practice.

I encourage you to start using the EAPC Basic Dataset! If you are interested in joining a clinical study to test the dataset, please contact Dr Sigurdardottir, KatrinRuth.Sigurdardottir@haraldsplass.no


  1. Sigurdardottir KR, Oldervoll L, Hjermstad MJ, Kaasa S, Knudsen AK, Løhre ET, Loge JH, Haugen DF. How are palliative care cancer populations characterized in randomized controlled trials? A literature review. J Pain Symptom Manage 2013 Sep 6  pii: S0885-3924(13)00390-4. doi: 10.1016/j.jpainsymman.2013.06.005. [Epub ahead of print]
  2. Sigurdardottir K, Kaasa S, Rosland JH, Bausewein C, Radbruch L, Haugen DF. The EAPC Basic Dataset to describe a palliative care cancer population. Results from an international Delphi process. Palliat Med 0269216314521264, first published on February 6, 2014 as doi:10.1177/0269216314521264.  

Palliative care in critical care settings
This Special Edition of Palliative Medicine is focused on developing our knowledge of the care of patients nearing the end of their lives in intensive and critical care settings. For more information and guidance please read the journal’s Author Guidelines. Deadline for submissions is 30 April 2014.  For further information please contact the Editorial Office: debbie.ashby@bristol.ac.uk

This entry was posted in EAPC White Papers, Guidelines & Recommendations, RESEARCH and tagged , . Bookmark the permalink.

One Response to Exciting news – but valid for my own patients?

  1. Pingback: Exciting news – but valid for my own patients? | EAPC Blog | All Things Palliative - Article Feed

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