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Comparing palliative care in care homes across Europe (PACE) : protocol of a cross-sectional study of deceased residents in 6 EU countries

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Abstract
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 socio-demographic 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 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.
Keywords
END, HEALTH, QUALITY, BELGIUM, NURSING-HOMES, NATIONWIDE SURVEY, LONG-TERM-CARE, ADVANCED DEMENTIA, FLANDERS, Palliative care, care home, nursing home, European, quality of end-of-life care, OF-LIFE CARE

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MLA
Van den Block, Lieve, Tinne Smets, Nanja van Dop, et al. “Comparing Palliative Care in Care Homes Across Europe (PACE) : Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries.” JOURNAL OF THE AMERICAN MEDICAL DIRECTORS ASSOCIATION 17.6 (2016): 566.e1–566.e7. Print.
APA
Van den Block, Lieve, Smets, T., van Dop, N., Adang, E., Andreasen, P., Collingridge Moore, D., Engels, Y., et al. (2016). Comparing palliative care in care homes across Europe (PACE) : protocol of a cross-sectional study of deceased residents in 6 EU countries. JOURNAL OF THE AMERICAN MEDICAL DIRECTORS ASSOCIATION, 17(6), 566.e1–566.e7.
Chicago author-date
Van den Block, Lieve, Tinne Smets, Nanja van Dop, Eddy Adang, Paula Andreasen, Danni Collingridge Moore, Yvonne Engels, et al. 2016. “Comparing Palliative Care in Care Homes Across Europe (PACE) : Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries.” Journal of the American Medical Directors Association 17 (6): 566.e1–566.e7.
Chicago author-date (all authors)
Van den Block, Lieve, Tinne Smets, Nanja van Dop, Eddy Adang, Paula Andreasen, Danni Collingridge Moore, Yvonne Engels, Harriet Finne-Soveri, Katherine Froggatt, Giovanni Gambassi, Violetta Kijowska, Bregje Onwuteaka-Philipsen, H Roeline Pasman, Sheila Payne, Ruth Piers, Katarzyna Szczerbinska, Maud ten Koppel, Nele Van Den Noortgate, Jenny T van der Steen, Myrra Vernooij-Dassen, and Luc Deliens. 2016. “Comparing Palliative Care in Care Homes Across Europe (PACE) : Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries.” Journal of the American Medical Directors Association 17 (6): 566.e1–566.e7.
Vancouver
1.
Van den Block L, Smets T, van Dop N, Adang E, Andreasen P, Collingridge Moore D, et al. Comparing palliative care in care homes across Europe (PACE) : protocol of a cross-sectional study of deceased residents in 6 EU countries. JOURNAL OF THE AMERICAN MEDICAL DIRECTORS ASSOCIATION. 2016;17(6):566.e1–566.e7.
IEEE
[1]
L. Van den Block et al., “Comparing palliative care in care homes across Europe (PACE) : protocol of a cross-sectional study of deceased residents in 6 EU countries,” JOURNAL OF THE AMERICAN MEDICAL DIRECTORS ASSOCIATION, vol. 17, no. 6, pp. 566.e1-566.e7, 2016.
@article{8048182,
  abstract     = {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 socio-demographic 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 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.},
  author       = {Van den Block, Lieve and Smets, Tinne and van Dop, Nanja and Adang, Eddy and Andreasen, Paula and Collingridge Moore, Danni and Engels, Yvonne and Finne-Soveri, Harriet and Froggatt, Katherine and Gambassi, Giovanni and Kijowska, Violetta and Onwuteaka-Philipsen, Bregje and Pasman, H Roeline and Payne, Sheila and Piers, Ruth and Szczerbinska, Katarzyna and ten Koppel, Maud and Van Den Noortgate, Nele and van der Steen, Jenny T and Vernooij-Dassen, Myrra and Deliens, Luc},
  issn         = {1525-8610},
  journal      = {JOURNAL OF THE AMERICAN MEDICAL DIRECTORS ASSOCIATION},
  keywords     = {END,HEALTH,QUALITY,BELGIUM,NURSING-HOMES,NATIONWIDE SURVEY,LONG-TERM-CARE,ADVANCED DEMENTIA,FLANDERS,Palliative care,care home,nursing home,European,quality of end-of-life care,OF-LIFE CARE},
  language     = {eng},
  number       = {6},
  pages        = {566.e1--566.e7},
  title        = {Comparing palliative care in care homes across Europe (PACE) : protocol of a cross-sectional study of deceased residents in 6 EU countries},
  url          = {http://dx.doi.org/10.1016/j.jamda.2016.03.008},
  volume       = {17},
  year         = {2016},
}

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