Improving cardiovascular care and outcomes: data variables, definitions and capture across geographies

Introduction
Cardiovascular (CVD) disease represents a significant health and economic burden. Adherence to guideline indicated medical therapy is associated with improved outcomes and quality of life. An avenue for further gains in mortality and morbidity is the adoption of standardised outcome definitions for both clinicians reported outcomes (CROs) and patient reported outcome measures (PROMs) in both research and routine care. Implementing such standardised outcomes may be possible within the wider framework of an international unified registry across Europe.
In this thesis my aim was to create an internationally derived catalogue of standardised cardiovascular outcome measures that includes PROMs for the common CVD.
Methods
Both a systematic and scoping review on CROs and PROMs (alongside contemporary qualitative assessment of PROMs) were performed. These were used to inform consensus work to develop a catalogue of defined, internationally derived cardiovascular outcome measures using the modified Delphi method.
Following feedback from delegates we conducted a separate modified Delphi exercise to collate a checklist evaluating the feasibility of implementing PROMs in a variety of settings.
Results
The systematic review demonstrated heterogeneity in CROs and variation in composite outcome component selection. Similarly, the scoping review showed that most HRQoL PROMs require further validation studies prior to routine use. The final defined candidate list includes 9 PROMs that were ranked highest and 25 mandatory and 50 optional CROs across the five domains. The feasibility checklist included eight unique candidate items.
Discussion
I present two catalogues of internationally derived definitions for CROs and PROMs for a range of common CVD, and a checklist that evaluates the feasibility of implementing PROMs prior to use. These structured catalogues may be used to facilitate high-quality observational and randomised research and enable care to be more patient centred.