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

Abstract

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.