Van den Block, Lieve, Smets, Tinne, van Dop, Nanja, Adang, Eddy, Andreasen, Paula, Collingridge Moore, Danni, Engels, Yvonne, Finne Soveri, Harriet, Froggatt, Katherine, Gambassi, Giovanni, Kijowska, Violetta, Onwuteaka Philipsen, Bregje, Pasman, H. Roeline, Payne, Sheila, Piers, Ruth, Szczerbińska, Katarzyna, ten Koppel, Maud, Van Den Noortgate, Nele, van der Steen, Jenny T., Vernooij Dassen, Myrra, Deliens, Luc, Gambassi, Giovanni (ORCID:0000-0002-7030-9359), Van den Block, Lieve, Smets, Tinne, van Dop, Nanja, Adang, Eddy, Andreasen, Paula, Collingridge Moore, Danni, Engels, Yvonne, Finne Soveri, Harriet, Froggatt, Katherine, Gambassi, Giovanni, Kijowska, Violetta, Onwuteaka Philipsen, Bregje, Pasman, H. Roeline, Payne, Sheila, Piers, Ruth, Szczerbińska, Katarzyna, ten Koppel, Maud, Van Den Noortgate, Nele, van der Steen, Jenny T., Vernooij Dassen, Myrra, Deliens, Luc, and Gambassi, Giovanni (ORCID:0000-0002-7030-9359)
Objectives: Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. Design and Methods: To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. Conclusion: Considering the g