title: Comparing Palliative Care in Care Homes Across Europe (PACE): Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries.
abstract: 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.
  
  
  
  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.
  
  
  
  Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes.
authors.affiliation: Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium. Electronic address: lvdblock@vub.ac.be.
authors.forename: Lieve
authors.initials: L
authors.lastname: Van den Block
authors.affiliation: Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
authors.forename: Tinne
authors.initials: T
authors.lastname: Smets
authors.affiliation: Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
authors.forename: Nanja
authors.initials: N
authors.lastname: van Dop
authors.affiliation: Department of Health Evidence, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Eddy
authors.initials: E
authors.lastname: Adang
authors.affiliation: National Institute for Health and Welfare, Helsinki, Finland.
authors.forename: Paula
authors.initials: P
authors.lastname: Andreasen
authors.affiliation: International Observatory on End-of-Life Care, Lancaster University, Lancaster, United Kingdom.
authors.forename: Danni
authors.initials: D
authors.lastname: Collingridge Moore
authors.affiliation: Department of Anesthesiology, Pain, and Palliative Medicine, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Engels
authors.affiliation: National Institute for Health and Welfare, Helsinki, Finland.
authors.forename: Harriet
authors.initials: H
authors.lastname: Finne-Soveri
authors.affiliation: International Observatory on End-of-Life Care, Lancaster University, Lancaster, United Kingdom.
authors.forename: Katherine
authors.initials: K
authors.lastname: Froggatt
authors.affiliation: Università Cattolica del Sacro Cuoro, Rome, Italy.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Gambassi
authors.affiliation: Unit for Research on Aging Society, Department of Sociology of Medicine, Epidemiology and Preventive Medicine Chair, Faculty of Medicine, Jagiellonian University Medical College, Krakow, Poland.
authors.forename: Violetta
authors.initials: V
authors.lastname: Kijowska
authors.affiliation: EMGO Institute for Health and Care research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands.
authors.forename: Bregje
authors.initials: B
authors.lastname: Onwuteaka-Philipsen
authors.affiliation: EMGO Institute for Health and Care research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands.
authors.forename: H Roeline
authors.initials: HR
authors.lastname: Pasman
authors.affiliation: International Observatory on End-of-Life Care, Lancaster University, Lancaster, United Kingdom.
authors.forename: Sheila
authors.initials: S
authors.lastname: Payne
authors.affiliation: Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium; Department of Geriatric Medicine, Ghent University Hospital, Ghent, Belgium.
authors.forename: Ruth
authors.initials: R
authors.lastname: Piers
authors.affiliation: Unit for Research on Aging Society, Department of Sociology of Medicine, Epidemiology and Preventive Medicine Chair, Faculty of Medicine, Jagiellonian University Medical College, Krakow, Poland.
authors.forename: Katarzyna
authors.initials: K
authors.lastname: Szczerbińska
authors.affiliation: EMGO Institute for Health and Care research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands.
authors.forename: Maud
authors.initials: M
authors.lastname: Ten Koppel
authors.affiliation: Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium; Department of Geriatric Medicine, Ghent University Hospital, Ghent, Belgium.
authors.forename: Nele
authors.initials: N
authors.lastname: Van Den Noortgate
authors.affiliation: EMGO Institute for Health and Care research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands.
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.affiliation: Radboud University Medical Center, IQ healthcare, Nijmegen, the Netherlands.
authors.forename: Myrra
authors.initials: M
authors.lastname: Vernooij-Dassen
authors.affiliation: Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium; Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
mesh_terms: D000368:Aged; D003430:Cross-Sectional Studies; D005060:Europe; D006801:Humans; D009735:Nursing Homes; D017063:Outcome Assessment, Health Care; D010166:Palliative Care; D013727:Terminal Care
keywords: European; Palliative care; care home; nursing home; quality of end-of-life care