What is the methodological rigour of palliative care research in long-term care facilities in Europe? A systematic review.
The European population is rapidly ageing, resulting in increasing numbers of older people dying in long-term care facilities. There is an urgent need for palliative care in long-term care facilities. The aim of this study was to systematically review the literature on palliative care research in long-term care facilities in Europe with respect to how the palliative care populations were described, and to determine the study designs and patient outcome measures utilized. We used a systematic literature review. The search strategy included searches of PubMed, Embase and PsychINFO databases from 2000 up to May 2010, using search terms related to 'palliative care' and 'end-of-life care' combined with search terms related to 'long-term care'. We selected articles that reported studies on patient outcome data of palliative care populations residing in a long-term care facility in Europe. This review demonstrated that there are few, and mainly descriptive, European studies on palliative care research in long-term care facilities. Fourteen studies were retained in the review, of which eight were conducted in the Netherlands. None of these studies described their study population specifically as a palliative care or end-of-life care population. Retrospective and prospective designs were applied using many different measurement instruments. Most instruments were proxy ratings. Symptom (management) was the most frequently measured outcome. To improve future research on palliative care in long-term care facilities, agreement on what can be considered as palliative care in long-term care facilities and, the availability of well-developed and tested measurement instruments is needed to provide more evidence, and to make future research more comparable.