Content comparison and person-centeredness of standards for quality improvement in cardiovascular health care

Background Quality standards are important for improving health care by providing compelling evidence for best practice. High quality person-centered health care requires information on patients' experience of disease and of functioning in daily life. Objective To analyze and compare the content of five Swedish National Quality Registries (NQRs) and two standard sets of the International Consortium of Health Outcomes Measurement (ICHOM) related to cardiovascular diseases. Materials and methods An analysis of 2588 variables (= data items) of five NQRs—the Swedish Registry of Congenital Heart Disease, Swedish Cardiac Arrest Registry, Swedish Catheter Ablation Registry, Swedish Heart Failure Registry, SWEDEHEART (including four sub-registries) and two ICHOM standard sets–the Heart Failure Standard Set and the Coronary Artery Disease Standard Set. According to the name and definition of each variable, the variables were mapped to Donabedian’s quality criteria, whereby identifying whether they capture health care processes or structures or patients’ health outcomes. Health outcomes were further analyzed whether they were clinician- or patient-reported and whether they capture patients’ physiological functions, anatomical structures or activities and participation. Results In total, 606 variables addressed process quality criteria (31%), 58 structure quality criteria (3%) and 760 outcome quality criteria (38%). Of the outcomes reported, 85% were reported by clinicians and 15% by patients. Outcome variables addressed mainly ‘Body functions’ (n = 392, 55%) or diseases (n = 209, 29%). Two percent of all documented data captured patients’ lived experience of disease and their daily activities and participation (n = 51, 3% of all variables). Conclusions Quality standards in the cardiovascular field focus predominately on processes (e.g. treatment) and on body functions-related outcomes. Less attention is given to patients’ lived experience of disease and their daily activities and participation. The results can serve as a starting-point for harmonizing data and developing a common person-centered quality indicator set.