Using electronic patient-reported outcomes to promote quality of care and safety in the management of patients with end stage kidney disease requiring treatment with haemodialysis

Anderson, Nicola Elizabeth ORCID: 0000-0002-0614-3198 (2023). Using electronic patient-reported outcomes to promote quality of care and safety in the management of patients with end stage kidney disease requiring treatment with haemodialysis. University of Birmingham. Ph.D.

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Patients with Chronic Kidney Disease (CKD), particularly those with end-stage kidney disease (ESKD) undertaking haemodialysis (HD), often experience a high symptom burden and diminished health-related quality of life. Data on these constructs can be collected directly from patients and measured using electronic patient-reported outcomes (ePROs). Responses can be used at an individual level to facilitate optimal care and improve shared decision making; research from other clinical settings suggests ePROs use can improve clinician/patient communication, improve health related quality of life, reduce hospitalisations, and increase overall survival, while demonstrating cost effectiveness. At an aggregate level, these data can be used for audit and benchmarking to improve services. However, ePROs have not been implemented routinely and systematically in kidney care settings.
The overall aim of this thesis was to explore and inform the evidence on how ePROs might be used to promote quality of care and safety in the management of patients with ESKD requiring treatment with HD.
Firstly, a synthesis of current evidence on the use and implementation of PROs for patients with ESKD receiving HD was undertaken; identifying gaps in the evidence base and areas for investigation to deliver a roadmap for increasing the evidence base and introducing ePROs into mainstream HD clinical practice.
Informed by these findings, a qualitative study was conducted, exploring the views, perceptions, and experiences of 22 patients receiving HD and 17 health care professionals (HCPs) in the HD multi-disciplinary team regarding the collection and use ePROs, in HD settings. This study highlighted the need to measure outcomes important to both patients and clinicians and supported the relevance of patient-reported outcomes included in HD-specific core outcome sets (COS). The study stressed the importance of building an empirical evidence base to support the use of ePROs and discussed key contextual implementation factors, including barriers and facilitators, to successful integration into clinical workflow.
Leading on from this was a study to examine whether currently available patient-reported outcome measures (PROMs) used in HD adequately cover outcomes/domains recommended in HD-specific COS. A systematic search of published literature identified two HD-specific COS designed for use in HD research and routine clinical care and 46 validated PROMs currently being used in HD settings. Following assessment of COS coverage and measure characteristics, options for measure choice were outlined.
Finally, to gain a deeper understanding of how ePROs might be successfully implemented, a mixed methods study was undertaken to comprehensively identify ePRO systems for CKD to explore system characteristics including methods of administration, levels of integration into existing workflow and electronic health records (EHR) and the reporting of ePROs to manage patient safety. Overall, 15 ePRO systems were identified allowing a comprehensive classification of core factors which contribute to successful implementation of ePROs in nephrology, including common facilitators and barriers.
To conclude, this thesis describes the current and potential use of ePROs in CKD, with a focus on use in haemodialysis (HD) populations. It draws together a range of original research, including views on potential measures, existing and emerging ePRO systems and priority areas for future research to outline a roadmap to use ePROs to improve the quality of care delivered to patients with ESKD undergoing HD.

Type of Work: Thesis (Doctorates > Ph.D.)
Award Type: Doctorates > Ph.D.
Aiyegbusi, Olalekan
Licence: All rights reserved
College/Faculty: Colleges (2008 onwards) > College of Medical & Dental Sciences
School or Department: Institute of Applied Health Research
Funders: National Institute for Health Research
Subjects: R Medicine > R Medicine (General)
R Medicine > RT Nursing


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