Whom is the study about?

– by Katrin Rut Sigurdardottir

This is a fundamental question when reading a scientific paper. Unfortunately, all too often the description of the patient population is insufficient in trials in end-of-life and palliative care. Many of us have read interesting papers from studies with impressive results, but due to the lack of an adequate description of the sample, the results have been useless to us.

Patients entering our trials, as well as health care professionals putting much effort into data collections, deserve that study results can be generalized to groups and settings beyond those included in the trial. One of the main reasons for many palliative care patients to participate in clinical studies, is that the results can be of help to others.

The need to standardize reporting has been recognized for many years. The PRC in collaboration with the EAPC-RN and the project PRISMA started in 2010 a process to develop and reach consensus on a basic set of variables to describe a palliative care cancer population. In a five step Delphi exercise, 64 experts from 30 countries reached consensus on 31 variables to be included in the EAPC Basic Dataset. The paper describing the work was recently published online in Palliative Medicine:

Katrin R Sigurdardottir, Stein Kaasa, Jan H Rosland, Claudia Bausewein, Lukas Radbruch, Dagny F Haugen, on behalf of PRISMA: The European Association for Palliative Care basic dataset to describe a palliative care cancer population: Results from an international Delphi process.

The EAPC basic dataset of patient characteristics and medical variables provides a unique platform for standardizing research reporting, and a common framework for researchers, clinicians, and other palliative care stakeholders. The EAPC basic dataset is now available as PDF files on the PRC websiteand will soon also be available on the EAPC homepage.

EAPC_Patient form_2

I strongly encourage researchers and clinicians to start using the dataset. We owe that to patients participating in our trials.

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