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Dying in long-term care facilities in Europe: The PACE epidemiological study of deceased residents in six countries

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Dying in long-term care facilities in Europe: The PACE epidemiological study of deceased residents in six countries. / Honinx, Elisabeth; Van Dop, Nanja; Smets, Tinne et al.
In: BMC Public Health, Vol. 19, No. 1, 1199, 30.08.2019.

Research output: Contribution to Journal/MagazineJournal articlepeer-review

Harvard

Honinx, E, Van Dop, N, Smets, T, Deliens, L, Van Den Noortgate, N, Froggatt, K, Gambassi, G, Kylänen, M, Onwuteaka-Philipsen, B, Szczerbińska, K, Van Den Block, L, Gatsolaeva, Y, Miranda, R, Pivodic, L, Tanghe, M, Van Hout, H, Pasman, RHRW, Oosterveld-Vlug, M, Piers, R, Wichmann, AB, Engels, Y, Vernooij-Dassen, M, Hockley, J, Payne, S, Leppäaho, S, Barańska, I, Pautex, S, Bassal, C, Mammarella, F, Mercuri, M, Rossi, P, Segat, I, Stodolska, A, Adang, E, Andreasen, P, Kuitunen-Kaija, O, Moore, DC, Pac, A, Kijowska, V, Ten Koppel, M, Van Der Steen, JT & De Paula, EM 2019, 'Dying in long-term care facilities in Europe: The PACE epidemiological study of deceased residents in six countries', BMC Public Health, vol. 19, no. 1, 1199. https://doi.org/10.1186/s12889-019-7532-4

APA

Honinx, E., Van Dop, N., Smets, T., Deliens, L., Van Den Noortgate, N., Froggatt, K., Gambassi, G., Kylänen, M., Onwuteaka-Philipsen, B., Szczerbińska, K., Van Den Block, L., Gatsolaeva, Y., Miranda, R., Pivodic, L., Tanghe, M., Van Hout, H., Pasman, R. H. R. W., Oosterveld-Vlug, M., Piers, R., ... De Paula, E. M. (2019). Dying in long-term care facilities in Europe: The PACE epidemiological study of deceased residents in six countries. BMC Public Health, 19(1), Article 1199. https://doi.org/10.1186/s12889-019-7532-4

Vancouver

Honinx E, Van Dop N, Smets T, Deliens L, Van Den Noortgate N, Froggatt K et al. Dying in long-term care facilities in Europe: The PACE epidemiological study of deceased residents in six countries. BMC Public Health. 2019 Aug 30;19(1):1199. doi: 10.1186/s12889-019-7532-4

Author

Honinx, Elisabeth ; Van Dop, Nanja ; Smets, Tinne et al. / Dying in long-term care facilities in Europe : The PACE epidemiological study of deceased residents in six countries. In: BMC Public Health. 2019 ; Vol. 19, No. 1.

Bibtex

@article{d9e1c56ca1554cd2b3e642ce67dc20e3,
title = "Dying in long-term care facilities in Europe: The PACE epidemiological study of deceased residents in six countries",
abstract = "Background: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally representative empirical data, either demographic or clinical, about people who die in long-term care facilities makes appropriate policy responses more difficult. Additionally, there is a lack of comparable cross-country data; the opportunity to compare and contrast data internationally would allow for a better understanding of both common issues and country-specific challenges and could help generate hypotheses about different options regarding policy, health care organization and provision. The objectives of this study are to describe the demographic, facility stay and clinical characteristics of residents dying in long-term care facilities and the differences between countries. Methods: Epidemiological study (2015) in a proportionally stratified random sample of 322 facilities in Belgium, Finland, Italy, the Netherlands, Poland and England. The final sample included 1384 deceased residents. The sampled facilities received a letter introducing the project and asking for voluntary participation. Facility manager, nursing staff member and treating physician completed structured questionnaires for all deaths in the preceding 3 months. Results: Of 1384 residents the average age at death ranged from 81 (Poland) to 87 (Belgium, England) (p < 0.001) and length of stay from 6 months (Poland, Italy) to 2 years (Belgium) (p < 0.05); 47% (the Netherlands) to 74% (Italy) had more than two morbidities and 60% (England) to 83% (Finland) dementia, with a significant difference between countries (p < 0.001). Italy and Poland had the highest percentages with poor functional and cognitive status 1 month before death (BANS-S score of 21.8 and 21.9 respectively). Clinical complications occurred often during the final month (51.9% England, 66.4% Finland and Poland). Conclusions: The population dying in long-term care facilities is complex, displaying multiple diseases with cognitive and functional impairment and high levels of dementia. We recommend future policy should include integration of high-quality palliative and dementia care.",
keywords = "End-of-life care, Long-term care facility, Nursing homes, Palliative care, Policy",
author = "Elisabeth Honinx and {Van Dop}, Nanja and Tinne Smets and Luc Deliens and {Van Den Noortgate}, Nele and Katherine Froggatt and Giovanni Gambassi and Marika Kyl{\"a}nen and Bregje Onwuteaka-Philipsen and Katarzyna Szczerbi{\'n}ska and {Van Den Block}, Lieve and Yuliana Gatsolaeva and Rose Miranda and Lara Pivodic and Marc Tanghe and {Van Hout}, Hein and Pasman, {Roeline H.R.W.} and Mariska Oosterveld-Vlug and Ruth Piers and Wichmann, {Anne B.} and Yvonne Engels and Myrra Vernooij-Dassen and Jo Hockley and Sheila Payne and Suvi Lepp{\"a}aho and Ilona Bara{\'n}ska and Sophie Pautex and Catherine Bassal and Federica Mammarella and Martina Mercuri and Paola Rossi and Ivan Segat and Agata Stodolska and Eddy Adang and Paula Andreasen and Outi Kuitunen-Kaija and Moore, {Danni Collingridge} and Agnieszka Pac and Violetta Kijowska and {Ten Koppel}, Maud and {Van Der Steen}, {Jenny T.} and {De Paula}, {Emilie Morgan}",
year = "2019",
month = aug,
day = "30",
doi = "10.1186/s12889-019-7532-4",
language = "English",
volume = "19",
journal = "BMC Public Health",
issn = "1471-2458",
publisher = "BMC",
number = "1",

}

RIS

TY - JOUR

T1 - Dying in long-term care facilities in Europe

T2 - The PACE epidemiological study of deceased residents in six countries

AU - Honinx, Elisabeth

AU - Van Dop, Nanja

AU - Smets, Tinne

AU - Deliens, Luc

AU - Van Den Noortgate, Nele

AU - Froggatt, Katherine

AU - Gambassi, Giovanni

AU - Kylänen, Marika

AU - Onwuteaka-Philipsen, Bregje

AU - Szczerbińska, Katarzyna

AU - Van Den Block, Lieve

AU - Gatsolaeva, Yuliana

AU - Miranda, Rose

AU - Pivodic, Lara

AU - Tanghe, Marc

AU - Van Hout, Hein

AU - Pasman, Roeline H.R.W.

AU - Oosterveld-Vlug, Mariska

AU - Piers, Ruth

AU - Wichmann, Anne B.

AU - Engels, Yvonne

AU - Vernooij-Dassen, Myrra

AU - Hockley, Jo

AU - Payne, Sheila

AU - Leppäaho, Suvi

AU - Barańska, Ilona

AU - Pautex, Sophie

AU - Bassal, Catherine

AU - Mammarella, Federica

AU - Mercuri, Martina

AU - Rossi, Paola

AU - Segat, Ivan

AU - Stodolska, Agata

AU - Adang, Eddy

AU - Andreasen, Paula

AU - Kuitunen-Kaija, Outi

AU - Moore, Danni Collingridge

AU - Pac, Agnieszka

AU - Kijowska, Violetta

AU - Ten Koppel, Maud

AU - Van Der Steen, Jenny T.

AU - De Paula, Emilie Morgan

PY - 2019/8/30

Y1 - 2019/8/30

N2 - Background: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally representative empirical data, either demographic or clinical, about people who die in long-term care facilities makes appropriate policy responses more difficult. Additionally, there is a lack of comparable cross-country data; the opportunity to compare and contrast data internationally would allow for a better understanding of both common issues and country-specific challenges and could help generate hypotheses about different options regarding policy, health care organization and provision. The objectives of this study are to describe the demographic, facility stay and clinical characteristics of residents dying in long-term care facilities and the differences between countries. Methods: Epidemiological study (2015) in a proportionally stratified random sample of 322 facilities in Belgium, Finland, Italy, the Netherlands, Poland and England. The final sample included 1384 deceased residents. The sampled facilities received a letter introducing the project and asking for voluntary participation. Facility manager, nursing staff member and treating physician completed structured questionnaires for all deaths in the preceding 3 months. Results: Of 1384 residents the average age at death ranged from 81 (Poland) to 87 (Belgium, England) (p < 0.001) and length of stay from 6 months (Poland, Italy) to 2 years (Belgium) (p < 0.05); 47% (the Netherlands) to 74% (Italy) had more than two morbidities and 60% (England) to 83% (Finland) dementia, with a significant difference between countries (p < 0.001). Italy and Poland had the highest percentages with poor functional and cognitive status 1 month before death (BANS-S score of 21.8 and 21.9 respectively). Clinical complications occurred often during the final month (51.9% England, 66.4% Finland and Poland). Conclusions: The population dying in long-term care facilities is complex, displaying multiple diseases with cognitive and functional impairment and high levels of dementia. We recommend future policy should include integration of high-quality palliative and dementia care.

AB - Background: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally representative empirical data, either demographic or clinical, about people who die in long-term care facilities makes appropriate policy responses more difficult. Additionally, there is a lack of comparable cross-country data; the opportunity to compare and contrast data internationally would allow for a better understanding of both common issues and country-specific challenges and could help generate hypotheses about different options regarding policy, health care organization and provision. The objectives of this study are to describe the demographic, facility stay and clinical characteristics of residents dying in long-term care facilities and the differences between countries. Methods: Epidemiological study (2015) in a proportionally stratified random sample of 322 facilities in Belgium, Finland, Italy, the Netherlands, Poland and England. The final sample included 1384 deceased residents. The sampled facilities received a letter introducing the project and asking for voluntary participation. Facility manager, nursing staff member and treating physician completed structured questionnaires for all deaths in the preceding 3 months. Results: Of 1384 residents the average age at death ranged from 81 (Poland) to 87 (Belgium, England) (p < 0.001) and length of stay from 6 months (Poland, Italy) to 2 years (Belgium) (p < 0.05); 47% (the Netherlands) to 74% (Italy) had more than two morbidities and 60% (England) to 83% (Finland) dementia, with a significant difference between countries (p < 0.001). Italy and Poland had the highest percentages with poor functional and cognitive status 1 month before death (BANS-S score of 21.8 and 21.9 respectively). Clinical complications occurred often during the final month (51.9% England, 66.4% Finland and Poland). Conclusions: The population dying in long-term care facilities is complex, displaying multiple diseases with cognitive and functional impairment and high levels of dementia. We recommend future policy should include integration of high-quality palliative and dementia care.

KW - End-of-life care

KW - Long-term care facility

KW - Nursing homes

KW - Palliative care

KW - Policy

U2 - 10.1186/s12889-019-7532-4

DO - 10.1186/s12889-019-7532-4

M3 - Journal article

C2 - 31470875

AN - SCOPUS:85071751647

VL - 19

JO - BMC Public Health

JF - BMC Public Health

SN - 1471-2458

IS - 1

M1 - 1199

ER -