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The utility of atrial fibrillation clinical registry data in the modelling of change in patient-reported outcomes

University of British Columbia

Patient-reported data collected in clinical registries are increasingly playing a role in improving patients’ outcomes by generating real-world information about the impact of treatment from patients’ perspectives. However, there is lack of methodological guidance on how to use these data to inform practice. Thus, the purpose of this study was to explore the analytical potential of patient-reported data stored in clinical registries with the aim of explicating the process of conducting such analyses and evaluating their utility. We examined patient-reported outcome trajectories of patients with atrial fibrillation in specialized multidisciplinary clinics and factors that predicted their different trajectories. The theoretical perspective that informed this study was the revised Wilson and Cleary framework using the Atrial Fibrillation Effect on QualiTy-of-Life (AFEQT) Questionnaire as the outcome. A retrospective analysis of provincial health registry data, collected by Cardiac Services BC, between 2008 and 2016, linked with administrative health data from Population Data BC was conducted using growth mixture models. We found that rather than a single health outcome trajectory, there were three different trajectories, with different patient characteristics (i.e., differences in age, gender, stroke risk score, and when ablation or anticoagulant therapy was received) that could inform tailored interventions. However, the findings highlighted the need for substantial transparency in the methods applied by the data stewards and researchers, including the need for well-defined data preparation and modelling specifications when conducting registry-based studies. To maximize the use of registry data, clinicians must share the responsibility in understanding informed consent and confidentiality, confirming data accuracy and structure, and selecting variables and cohorts of interest. Key questions in their use include: (1) What is the purpose of the registry and the rationale for its development? (2) What is the process and the context in which the registry data have been collected? and (3) What procedures have been applied to correct for sources of data error? Answering these questions will bring greater alignment between the quality of the patient-reported data, the questions they can help answer, and their intended purpose to integrate patients’ perspectives in registries and to effectively support patient-centred care.

Text

2020-05-12

Attribution-NonCommercial-ShareAlike 4.0 International

http://hdl.handle.net/2429/74408

Nursing

University of British Columbia

UBCV

http://creativecommons.org/licenses/by-nc-sa/4.0/