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Defining the patient population: one of the problems for palliative care research

Department of Public and Occupational Health, VU University Medical Center, Amsterdam and EMGO Institute, VU University Medical Center, Amsterdam, s.borgsteede{at}vumc.nl

Luc Deliens

Department of Public and Occupational Health, VU University Medical Center, Amsterdam and EMGO Institute, VU University Medical Center, Amsterdam and Palliative Care Research Group, Vrije Universiteit Brussel, Brussels

Anneke L Francke

NIVEL, Netherlands Institute for Health Services Research, Utrecht

Wim AB Stalman

EMGO Institute, VU University Medical Center, Amsterdam and Department of General Practice, University of Amsterdam, Amsterdam

Dick L Willems

Department of General Practice, Academic Medical Centre, Amsterdam

Jacques ThM van Eijk

Department of Medical Sociology, University of Maastricht, Maastricht

Gerrit van der Wal

Department of Public and Occupational Health, VU University Medical Center, Amsterdam and EMGO Institute, VU University Medical Center, Amsterdam

There is a lack of clear definition and clear inclusion criteria in palliative care research. The aim of this study was to describe consequences of three inclusion criteria in the build up of different study populations, studied in terms of size, number of doctor-patient contacts and demographic characteristics. General practitioners received a questionnaire for all patients who died during the second Dutch National Survey of General Practice (n = 2194), to determine whether (1) patients received non-curative treatment; (2) patients received palliative care; and (3) death was expected (total response rate= 73%). The criterion ‘death was expected’ included most patients (62%) followed by ‘palliative care’ (46%) and ‘noncurative treatment’ (39%). Similarity between the definition-based populations was fair to moderate. More ‘palliative care’ and ‘death was expected’ in patients who had cancer than ‘non-curative treatment’ patients. The conclusions show substantial differences in populations according to the different inclusion criteria used to select them. Future research in palliative care should acknowledge the limitations of using certain inclusion criteria and explore potential bias.

Key Words: definitions • epidemiology • general practice • palliative care • patient selection • public health

Palliative Medicine, Vol. 20, No. 2, 63-68 (2006)
DOI: 10.1191/0269216306pm1112oa


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