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Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study

Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study
Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study

OBJECTIVE: To explore dialysis decision-making for adults who lack capacity due to cognitive impairment, a common and under-recognised condition in those with advanced chronic kidney disease (CKD). DESIGN: Secondary analysis of qualitative data collected during the Conservative Kidney Management Assessment of Practice Patterns Study programme of research was performed. Sixty semistructured interviews were conducted with multiprofessional team members from UK renal centres. Staff were asked about local facilities, the value of conservative kidney management (CKM), when and with whom CKM was discussed and how CKM could be improved. Thematic analysis was employed to identify, characterise and report on themes that emerged from the data, focused on the specific issues experienced by people with dementia. SETTING: A purposive sample of nine UK renal centres differing in the scale of their CKM programmes. PARTICIPANTS: Clinical directors of renal centres identified staff involved in CKM. Staff were asked to participate if they had experience of low clearance clinics or of caring for patients with advanced CKD (estimated glomerular filtration rate <20mL/min/1.732 or >65 years with end-stage kidney disease). RESULTS: Two overarching themes were identified: factors taken into consideration during decision-making, and the process of decision-making itself. Comorbidity, social support, quality of life and the feasibility of dialysis were reported as factors pertinent to clinicians' decisions regarding suitability. The majority of renal centres practised multidisciplinary 'best interests' decision-making for those without capacity. Attitudes to advance care planning were divided. CONCLUSIONS: In view of the prevalence of cognitive impairment among those with advanced CKD, we suggest consideration of routine assessment of cognition and capacity. In the UK, dialysis is initiated and continued for individuals with dementia and services should be adapted to meet the needs of this population.

adult palliative care, dementia, dialysis, end stagerenal failure, nephrology
2044-6055
e022385
Scott, Jemima
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Owen-Smith, Amanda
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Tonkin-Crine, Sarah
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Rayner, Hugh
d9309eea-acda-449d-9759-3b7d5561ef80
Roderick, Paul
dbb3cd11-4c51-4844-982b-0eb30ad5085a
Okamoto, Ikumi
fc9b4fed-0c78-4925-9e6f-2bfa7c3d48bc
Leydon, Geraldine
c5cdaff5-0fa1-4d38-b575-b97c2892ec40
Caskey, Fergus
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Methven, Shona
95080b26-4430-4d08-aff8-e2f2956e863c
Scott, Jemima
4745fd5d-3236-4577-b4d4-2420a36486b9
Owen-Smith, Amanda
84f5d3a2-6f28-4f94-9fa4-a54fc0a51de6
Tonkin-Crine, Sarah
65679835-9bdc-48b6-92f3-cc6322cccc4f
Rayner, Hugh
d9309eea-acda-449d-9759-3b7d5561ef80
Roderick, Paul
dbb3cd11-4c51-4844-982b-0eb30ad5085a
Okamoto, Ikumi
fc9b4fed-0c78-4925-9e6f-2bfa7c3d48bc
Leydon, Geraldine
c5cdaff5-0fa1-4d38-b575-b97c2892ec40
Caskey, Fergus
5f576f0a-f2da-473d-82fe-a2b684b9fb29
Methven, Shona
95080b26-4430-4d08-aff8-e2f2956e863c

Scott, Jemima, Owen-Smith, Amanda, Tonkin-Crine, Sarah, Rayner, Hugh, Roderick, Paul, Okamoto, Ikumi, Leydon, Geraldine, Caskey, Fergus and Methven, Shona (2018) Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study. BMJ Open, 8 (11), e022385. (doi:10.1136/bmjopen-2018-022385).

Record type: Article

Abstract

OBJECTIVE: To explore dialysis decision-making for adults who lack capacity due to cognitive impairment, a common and under-recognised condition in those with advanced chronic kidney disease (CKD). DESIGN: Secondary analysis of qualitative data collected during the Conservative Kidney Management Assessment of Practice Patterns Study programme of research was performed. Sixty semistructured interviews were conducted with multiprofessional team members from UK renal centres. Staff were asked about local facilities, the value of conservative kidney management (CKM), when and with whom CKM was discussed and how CKM could be improved. Thematic analysis was employed to identify, characterise and report on themes that emerged from the data, focused on the specific issues experienced by people with dementia. SETTING: A purposive sample of nine UK renal centres differing in the scale of their CKM programmes. PARTICIPANTS: Clinical directors of renal centres identified staff involved in CKM. Staff were asked to participate if they had experience of low clearance clinics or of caring for patients with advanced CKD (estimated glomerular filtration rate <20mL/min/1.732 or >65 years with end-stage kidney disease). RESULTS: Two overarching themes were identified: factors taken into consideration during decision-making, and the process of decision-making itself. Comorbidity, social support, quality of life and the feasibility of dialysis were reported as factors pertinent to clinicians' decisions regarding suitability. The majority of renal centres practised multidisciplinary 'best interests' decision-making for those without capacity. Attitudes to advance care planning were divided. CONCLUSIONS: In view of the prevalence of cognitive impairment among those with advanced CKD, we suggest consideration of routine assessment of cognition and capacity. In the UK, dialysis is initiated and continued for individuals with dementia and services should be adapted to meet the needs of this population.

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Accepted/In Press date: 28 September 2018
e-pub ahead of print date: 12 November 2018
Keywords: adult palliative care, dementia, dialysis, end stagerenal failure, nephrology

Identifiers

Local EPrints ID: 426263
URI: http://eprints.soton.ac.uk/id/eprint/426263
ISSN: 2044-6055
PURE UUID: 220cda0f-abfd-4c46-b628-670bba462955
ORCID for Paul Roderick: ORCID iD orcid.org/0000-0001-9475-6850
ORCID for Geraldine Leydon: ORCID iD orcid.org/0000-0001-5986-3300

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Date deposited: 21 Nov 2018 17:30
Last modified: 11 Feb 2020 01:29

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Contributors

Author: Jemima Scott
Author: Amanda Owen-Smith
Author: Sarah Tonkin-Crine
Author: Hugh Rayner
Author: Paul Roderick ORCID iD
Author: Ikumi Okamoto
Author: Fergus Caskey
Author: Shona Methven

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