Patient Perspectives of Centre Specific Reporting in Kidney Failure Care: An Australian Qualitative Study

Emily Duncanson; Christopher E Davies; Shyamsundar Muthuramalingam; Effie Johns; Kate McColm; Matty Hempstalk; Zoran Tasevski; Nicholas Gray; Stephen McDonald

doi:10.1016/j.ekir.2024.01.001

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Patient Perspectives of Centre Specific Reporting in Kidney Failure Care: An Australian Qualitative Study

Journal article

Open access

Peer reviewed

Patient Perspectives of Centre Specific Reporting in Kidney Failure Care: An Australian Qualitative Study

Emily Duncanson, Christopher E Davies, Shyamsundar Muthuramalingam, Effie Johns, Kate McColm, Matty Hempstalk, Zoran Tasevski, Nicholas Gray and Stephen McDonald

Kidney International Reports, Vol.9(4), pp.843-852

2024

DOI: https://doi.org/10.1016/j.ekir.2024.01.001

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Abstract

centre outcomes

kidney disease

public reporting

qualitative resaerch

quality indicators

Introduction: Public reporting of quality of care indicators in healthcare is intended to inform consumer decision-making, however people may be unaware such information exists or it may not capture their priorities. The aim of this study was to understand the views of people with kidney disease about public reporting of dialysis and transplant centre outcomes. Methods: This qualitative study involved twenty-seven patients with lived experience of kidney disease in Australia who participated across eleven online focus groups between August and December 2022. Transcripts were analysed thematically. Results: Patients from all Australian states and territories participated, with 22 (81%) having a functioning kidney transplant and 22 (81%) having current or previous experience of dialysis. Five themes were identified: 1) Surrendering to the health system, 2) The complexity of quality, 3) Benefits for patient care and experience, 4) Concerned about risks and unintended consequences, 5) Optimising the impact of data. Conclusion: Patients desire choice among kidney services but perceive this as rarely possible in the Australian context. Health professionals are trusted to make decisions about appropriate centres. Public reporting of centre outcomes may induce fear and a loss of balanced perspective, but was supported by all participants and represents an opportunity for self-advocacy and informed decision-making. Strategies to mitigate potential risks include availability of trusted clinicians and community members to aid in data interpretation, providing context about centres and patients, and framing statistics to promote positivity and hope.

Details

Title: Patient Perspectives of Centre Specific Reporting in Kidney Failure Care: An Australian Qualitative Study
Authors: Emily Duncanson (Author) - The University of Adelaide
Christopher E Davies (Corresponding Author) - The University of Adelaide
Shyamsundar Muthuramalingam (Author) - South Australian Health and Medical Research Institute
Effie Johns (Author) - South Australian Health and Medical Research Institute
Kate McColm (Author) - South Australian Health and Medical Research Institute
Matty Hempstalk (Author) - South Australian Health and Medical Research Institute
Zoran Tasevski (Author) - South Australian Health and Medical Research Institute
Nicholas Gray (Author) - University of the Sunshine Coast, Queensland, School of Health and Behavioural Sciences - Legacy
Stephen McDonald (Author) - The University of Adelaide
Publication details: Kidney International Reports, Vol.9(4), pp.843-852
Publisher: Elsevier Inc.
Date published: 2024
DOI: 10.1016/j.ekir.2024.01.001
ISSN: 2468-0249
Copyright note: This article is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/
Grants: Building on registry data to improve dialysis and kidney transplantation, 1173941, National Health and Medical Research Council (Australia, Canberra) - NHMRC
Organisation Unit: UniSC Clinical Trials Centre; School of Health and Behavioural Sciences - Legacy
Language: English
Record Identifier: 99991498102621
Output Type: Journal article

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