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Who to include in palliative care research? Consequences of different population definitions in palliative care epidemiology.

Borgsteede, S.D., Deliens, L., Francke, A.L., Stalman, W.A.B., Willems, D.L., Eijk, T.T.M. van, Wal, G. van der. Who to include in palliative care research? Consequences of different population definitions in palliative care epidemiology. European Journal of Palliative Care: 2003, 10(4), 6
Object of the study: Epidemiological research into palliative care faces the problem of defining an adequate research population. Subjects in studies are alternately defined as patients receiving 'palliative care' , 'palliative treatment' or 'end of life care'. So far, it is not known how populations defined by these definitions differ on outcomes and patient-characteristics. The research goal of this study is to illuminate the consequences of population definition on the number of included patients, their characteristics, symptoms and symptom management. Method: Data of this study orgininate from the second Dutch National Survey of General Practice of Nivel, in which information on all doctor-patient contacts in one year period (contact details, diagnosis, management, etc.) are registered. 106 Dutch general practices participated in this study. We asked for each patient who died whether he/she received (a) end of life care, (b) palliative treatment and/or (c) palliative care. Results: We analysed a sample of 283 completed questionnaires. Less patients (39%) were marked as receiving palliative treatment compared to patients categorised as 'end of life care' (56%) and patient receiving 'palliative care' (55%). Between the 'end of life care' and 'palliative care' populations no differences in age, sex and primary disease distributrions were found. Differences in moxst common symptom and symptom management were found between 'end of life care' and 'palliative care' populations. Conclusions: This study showed marked differences in data according to whether the population was defined as receiving palliative care, palliative treatment or end-of-life care. Epidemiological studies should be aware of this. (aut.ref.)
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