THIS MONTH’S EDITOR’S CHOICE FROM PALLIATIVE MEDICINE …
A lack of common criteria to describe a palliative care cancer population in studies has led to the development of the first version of the European Association for Palliative Care (EAPC) basic dataset. Dr Katrin Sigurdardottir, a palliative care consultant and post-doctoral researcher working in the Regional Centre of Excellence for Palliative Care, Haukeland University, Norway, explains the background to the research study now published in the July issue of ‘Palliative Medicine’.
Preparatory work for this article began many years ago and is the result of a long-standing collaboration between a former PhD student (me) and my mentor, Professor Dagny Faksvåg Haugen. Along the way, many others have given substantial contributions, and without their help I would not be writing this blog post. I want to use the opportunity to express my gratitude to all collaborating researchers, clinicians and patients.
As part of my PhD work, I was involved in mapping research in cancer palliative care in Europe and identifying barriers to this research. 1, 2 The work was performed within a European Union-funded project led by Professor Irene Higginson and Professor Richard Harding: “Reflecting the positive diversities of European priorities for research and measurement in end of life care” (PRISMA). One of the identified barriers was the lack of common criteria to describe a palliative care cancer population in studies. With the aim to overcome this barrier, the European Palliative Care Research Centre (PRC) in collaboration with PRISMA and the EAPC Research Network started a process to develop and reach consensus on a basic dataset to describe a study sample.
The first step was to conduct a systematic literature review to explore how samples of cancer patients with advanced disease were described in randomised clinical trials. 3The results were a wake-up call for me. Some of the studies we read contained exciting research results, and the internal validity was impeccable. At the same time it was impossible to know whether the results were applicable to a given patient group, due to deficient descriptions of the study participants.
Our next step was to achieve international consensus on the contents of a basic dataset of demographic and disease-related variables. We managed to reach agreement on the dataset through a Delphi process with five rounds. The resulting questionnaire was named the EAPC basic dataset. 4The first version contained 31 variables: demographic information, patient-reported outcome measures and disease-related variables.
The current publication presents the results from pilot testing of the first version of the EAPC basic dataset. Three hundred and eighty-one patients and healthcare professionals from nine study sites in five European countries participated. We found that palliative care cancer patients, as well as their healthcare providers, were willing and able to use the dataset, and time expenditure was acceptable. The pilot testing led to rewording of items, improvement in response options and shortening of the data set to 29 items.
EAPC basic dataset is now available in English, French, Norwegian and Italian. The English version of the dataset is available here.
Our hope is that palliative care researchers will agree on using this dataset, with the aim to develop it further in years to come. To honour patients who participate in research, we have an obligation to describe the sample in such a way that results are easily transferable. If not, we are failing our patients.
- Sigurdardottir KR, Haugen DF, Bausewein C, et al. A pan-European survey of research in end-of-life cancer care. Support Care Cancer. 2012; 20: 39-48.
- Sigurdardottir KR, Haugen DF, van der Rijt CC, et al. Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop. Eur J Cancer. 2010; 46: 1815-22.
- Sigurdardottir KR, Oldervoll L, Hjermstad MJ, et al. How are palliative care cancer populations characterized in randomized controlled trials? A literature review. J Pain Symptom Manage. 2014; 47: 906-14 e17.
- Sigurdardottir KR, Kaasa S, Rosland JH, et al. The European Association for Palliative Care basic dataset to describe a palliative care cancer population: Results from an international Delphi process. Palliat Med. 2014; 28: 463-73. (EAPC members can download this paper free of charge from the EAPC website in the ‘Collection of EAPC white papers published in Palliative Medicine).
- Contact Dr Katrin Sigurdardottir by email.
- European Palliative Care Research Centre (PRC).
- EAPC Research Network.
This post relates to the longer article, ‘Pilot Testing of the First Version of the European Association for Palliative Care (EAPC) Basic Dataset: a mixed methods study’ by Sigurdardottir KR, Hjermstad MJ, Filbet M, Tricou C, McQuillan R, Costantini M, Autelitano C, Bennett MI, Faksvåg Haugen D, published in Palliative Medicine 2019 Volume: 33 issue: 7, page(s): 832-849. https://doi.org/10.1177/0269216319844439
Article first published online: April 26, 2019. Issue published: 1 July 2019.
- Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
- Follow Palliative Medicine on Twitter @palliativemedj
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