Patient experience in Australian outpatient rheumatology care
Date
2024
Authors
Bryant, Madeleine Jane
Editors
Advisors
Hill, Catherine
Black, Rachel
Black, Rachel
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Thesis
Citation
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Abstract
Patient Reported Experience Measures (PREMs) are surveys which directly capture the patient perspective of receiving healthcare, specifically addressing the process, content and impact of care. PREM use can give comprehensive insights into the state of healthcare delivery and service improvement, and PREMS are increasingly incorporated into processes to appraise care outcomes and performance. Routine PREM capture in the specialty of rheumatology is to date only sporadically described. The overall aim of the following thesis is to bring a rheumatology-specific PREM to Australian patients. To characterise the extent of PREM use in this context and establish a knowledge gap, a systematic review of internationally available rheumatology-specific PREMs was conducted. Six databases were searched systematically for articles describing the use or development of PREMs, with results of psychometric testing, for use with adult rheumatology outpatients. Included studies were appraised using the Consensus Based Standards for the selection of health status Measurement Instruments (COSMIN) Risk of Bias checklist and criteria for good measurement properties. The literature search yielded 3809 publications, and six studies met inclusion criteria. The systematic review identified five validated PREMs for use with adult rheumatology outpatients. Among the studies identified for inclusion, there was broad heterogeneity of methodology used in instrument development and content validity testing. The systematic review highlighted the need for further well-designed studies to validate rheumatology-specific PREMs. The PREMs identified in the systematic review were assessed in further detail for suitability for adaptation and validation with adult Australian rheumatology outpatients. Pre-defined criteria for appraisal included target population, target domains, proven psychometric properties, item generation and language. By consensus, the instrument identified for validation in Australia was the Commissioning for Quality in Rheumatoid Arthritis-Rheumatoid Arthritis-Patient Reported Experience Measure (CQRA-RA-PREM). A qualitative study was undertaken to establish a framework of priorities identified by Australian rheumatology patients (n=16) and healthcare providers (n=14). Focus group methodology was used to explore the priorities of participants when attending and providing care, lived experience and identified areas for care improvement. The study identified seven key qualitative themes relating to differing and shared priorities among stakeholders. Themes formed a framework to question (and confirm) alignment of concerns with this population of interest and the domains covered by the candidate CQRA-RA-PREM instrument. Face validity testing of the instrument was subsequently performed with Australian patients (n=8) and informed modifications to the wording and definitions contained within the instrument, such that an Australian version (CQRAPREM- AU) could thereafter be tested. Psychometric validation of CQRA-PREM-AU was undertaken in a nationally-derived population of adult Australian rheumatology outpatients (n=707) with mixed diagnoses of rheumatoid arthritis (RA), psoriatic arthritis (PsA) and ankylosing spondylitis (AS). Psychometric properties of structural validity, internal consistency, divergent validity and measurement invariance, and interpretability were confirmed for the instrument in this cohort. An overall summary score was applied to the instrument with confirmed reliability. Finally, CQRA-PREM-AU was implemented in a networked rheumatology service, to determine patient care experience captured by the instrument in this context. Responses (n=1194) were analysed for ranked agreement with CQRA-PREM-AU care domains, overall mean score, and correlation with patient- and clinic-related covariates. Groups of patients with specific diagnoses were identified as having lower overall experience score. Older age and contact with a rheumatology specialty nurse were correlates of better overall experience score. The study demonstrated the use of CQRAPREM- AU in clinical practice and informed conceptual understanding of how experience data can be used to inform changes to service delivery and patient care.
School/Discipline
Adelaide Medical School
Dissertation Note
Thesis (Ph.D.) -- University of Adelaide, Adelaide Medical School, 2025
Provenance
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