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Nurse-led advance care planning with older people who have end-stage kidney disease: feasibility of a deferred entry randomised controlled trial incorporating an economic evaluation and mixed methods process evaluation (ACReDiT)

O’Halloran, Peter; Noble, Helen; Norwood, Kelly; Maxwell, Peter; Murtagh, Fliss; Shields, Joanne; Mullan, Robert; Matthews, Michael; Cardwell, Christopher; Clarke, Mike; Morton, Rachael; Shah, Karan; Forbes, Trisha; Brazil, Kevin

Authors

Peter O’Halloran

Helen Noble

Kelly Norwood

Peter Maxwell

Joanne Shields

Robert Mullan

Michael Matthews

Christopher Cardwell

Mike Clarke

Rachael Morton

Karan Shah

Trisha Forbes

Kevin Brazil



Abstract

© 2020, The Author(s).
Background: Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness.
Methods: A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life.
Results: Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups.
Conclusions: A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions.
Trial registration: Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200.

Citation

O’Halloran, P., Noble, H., Norwood, K., Maxwell, P., Murtagh, F., Shields, J., …Brazil, K. (2020). Nurse-led advance care planning with older people who have end-stage kidney disease: feasibility of a deferred entry randomised controlled trial incorporating an economic evaluation and mixed methods process evaluation (ACReDiT). BMC Nephrology, 21, https://doi.org/10.1186/s12882-020-02129-5

Journal Article Type Article
Acceptance Date Oct 26, 2020
Publication Date Nov 13, 2020
Deposit Date Dec 23, 2020
Publicly Available Date Dec 23, 2020
Journal BMC Nephrology
Print ISSN 1471-2369
Electronic ISSN 1471-2369
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 21
Article Number 478
DOI https://doi.org/10.1186/s12882-020-02129-5
Public URL https://hull-repository.worktribe.com/output/3664489

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