CELPI: trial protocol for a randomised controlled trial of a Carer End of Life Planning Intervention in people dying with dementia.

Arendts, G; Chenoweth, L; Hayes, BJ; Campbell, E; Agar, M; Etherton-Beer, C; Spilsbury, K; Howard, K; Braitberg, G; Cubitt, M; Sheehan, C; Magann, L; Sudharshan, T; Schnitker, LM; Pearce, J; Gilmore, I; Cerra, N; duPreez, J; Jaworski, R; Soh, S-C; Celenza, A

CELPI: trial protocol for a randomised controlled trial of a Carer End of Life Planning Intervention in people dying with dementia.

Arendts, G Chenoweth, L Hayes, BJ Campbell, E Agar, M

Etherton-Beer, C Spilsbury, K Howard, K Braitberg, G Cubitt, M Sheehan, C Magann, L Sudharshan, T Schnitker, LM Pearce, J Gilmore, I Cerra, N duPreez, J Jaworski, R Soh, S-C Celenza, A

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Publisher:: Springer Science and Business Media LLC
Publication Type:: Journal Article
Citation:: BMC Geriatr, 2022, 22, (1), pp. 869
Issue Date:: 2022-11-16

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Field	Value	Language
dc.contributor.author	Arendts, G
dc.contributor.author	Chenoweth, L
dc.contributor.author	Hayes, BJ
dc.contributor.author	Campbell, E
dc.contributor.author	Agar, M https://orcid.org/0000-0002-6756-6119
dc.contributor.author	Etherton-Beer, C
dc.contributor.author	Spilsbury, K
dc.contributor.author	Howard, K
dc.contributor.author	Braitberg, G
dc.contributor.author	Cubitt, M
dc.contributor.author	Sheehan, C
dc.contributor.author	Magann, L
dc.contributor.author	Sudharshan, T
dc.contributor.author	Schnitker, LM
dc.contributor.author	Pearce, J
dc.contributor.author	Gilmore, I
dc.contributor.author	Cerra, N
dc.contributor.author	duPreez, J
dc.contributor.author	Jaworski, R
dc.contributor.author	Soh, S-C
dc.contributor.author	Celenza, A
dc.date.accessioned	2022-11-30T23:16:44Z
dc.date.available	2022-10-16
dc.date.available	2022-11-30T23:16:44Z
dc.date.issued	2022-11-16
dc.identifier.citation	BMC Geriatr, 2022, 22, (1), pp. 869
dc.identifier.issn	1471-2318
dc.identifier.issn	1471-2318
dc.identifier.uri	http://hdl.handle.net/10453/163937
dc.description.abstract	BACKGROUND: Dementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic barriers to accessing palliative care in older people dying of dementia. Evidence exists that 70% of people living with severe dementia attend an emergency department (ED) in their last year of life. The aim of this trial is to test whether a Carer End of Life Planning Intervention (CELPI), co-designed by consumers, clinicians and content specialists, improves access to end of life care for older people with severe dementia, using an ED visit as a catalyst for recognising unmet needs and specialist palliative care referral where indicated. METHODS: A randomised controlled trial (RCT) enrolling at six EDs across three states in Australia will be conducted, enrolling four hundred and forty dyads comprising a person with severe dementia aged ≥ 65 years, and their primary carer. Participants will be randomly allocated to CELPI or the control group. CELPI incorporates a structured carer needs assessment and referral to specialist palliative care services where indicated by patient symptom burden and needs assessment. The primary outcome measure is death of the person with dementia in the carer-nominated preferred location. Secondary outcomes include carer reported quality of life of the person dying of dementia, hospital bed day occupancy in the last 12 months of life, and carer stress. An economic evaluation from the perspective of a health funder will be conducted. DISCUSSION: CELPI seeks to support carers and provide optimal end of life care for the person dying of dementia. This trial will provide high level evidence as to the clinical and cost effectiveness of this intervention. TRIAL REGISTRATION: ACTRN12622000611729 registered 22/04/2022.
dc.format	Electronic
dc.language	eng
dc.publisher	Springer Science and Business Media LLC
dc.relation.ispartof	BMC Geriatr
dc.relation.isbasedon	10.1186/s12877-022-03534-1
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1103 Clinical Sciences, 1106 Human Movement and Sports Sciences
dc.subject.classification	Geriatrics
dc.subject.mesh	Humans
dc.subject.mesh	Aged
dc.subject.mesh	Caregivers
dc.subject.mesh	Dementia
dc.subject.mesh	Quality of Life
dc.subject.mesh	Palliative Care
dc.subject.mesh	Death
dc.subject.mesh	Randomized Controlled Trials as Topic
dc.subject.mesh	Humans
dc.subject.mesh	Dementia
dc.subject.mesh	Death
dc.subject.mesh	Palliative Care
dc.subject.mesh	Quality of Life
dc.subject.mesh	Aged
dc.subject.mesh	Caregivers
dc.subject.mesh	Randomized Controlled Trials as Topic
dc.title	CELPI: trial protocol for a randomised controlled trial of a Carer End of Life Planning Intervention in people dying with dementia.
dc.type	Journal Article
utslib.citation.volume	22
utslib.location.activity	England
utslib.for	1103 Clinical Sciences
utslib.for	1106 Human Movement and Sports Sciences
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
utslib.copyright.status	open_access	*
dc.date.updated	2022-11-30T23:16:43Z
pubs.issue	1
pubs.publication-status	Published online
pubs.volume	22
utslib.citation.issue	1

Abstract:

BACKGROUND: Dementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic barriers to accessing palliative care in older people dying of dementia. Evidence exists that 70% of people living with severe dementia attend an emergency department (ED) in their last year of life. The aim of this trial is to test whether a Carer End of Life Planning Intervention (CELPI), co-designed by consumers, clinicians and content specialists, improves access to end of life care for older people with severe dementia, using an ED visit as a catalyst for recognising unmet needs and specialist palliative care referral where indicated. METHODS: A randomised controlled trial (RCT) enrolling at six EDs across three states in Australia will be conducted, enrolling four hundred and forty dyads comprising a person with severe dementia aged ≥ 65 years, and their primary carer. Participants will be randomly allocated to CELPI or the control group. CELPI incorporates a structured carer needs assessment and referral to specialist palliative care services where indicated by patient symptom burden and needs assessment. The primary outcome measure is death of the person with dementia in the carer-nominated preferred location. Secondary outcomes include carer reported quality of life of the person dying of dementia, hospital bed day occupancy in the last 12 months of life, and carer stress. An economic evaluation from the perspective of a health funder will be conducted. DISCUSSION: CELPI seeks to support carers and provide optimal end of life care for the person dying of dementia. This trial will provide high level evidence as to the clinical and cost effectiveness of this intervention. TRIAL REGISTRATION: ACTRN12622000611729 registered 22/04/2022.

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http://hdl.handle.net/10453/163937