Pilot testing of the International Council of Cardiovascular Prevention and Rehabilitation Registry

Abstract

The International Council of Cardiovascular Prevention and Rehabilitation developed an International Cardiac Rehabilitation (CR) Registry (ICRR) to support CR programs in low-resource settings to optimize care provision and patient outcomes. This study assessed implementation of the ICRR, site data steward experience with on-boarding and data entry, and patient acceptability. Multimethod observational pilot involves (I) analysis of ICRR data from three centers (Iran, Pakistan, and Qatar) from inception to May 2022, (II) focus group with on-boarded site data stewards (also from Mexico and India), and (III) semistructured interviews with participating patients. Five hundred sixty-seven patients were entered. Based on volumes at each program, 85.6 of patients were entered in ICRR. 99.3 patients approached consented to participate. The average time to enter data at pre- and follow-up assessments by source was 6.8-12.6 min. Of 22 variables preprogram, completion was 89.5. Among patients with any follow-up data, of four program-reported variables, completion was 99.0 in program completers and 51.5 in none; of 10 patient-reported variables, completion was 97.0 in program completers and 84.8 in none. The proportion of patients with any follow-up data was 84.8 in program completers, with 43.6 of noncompleters having any data entered other than completion status. Twelve data stewards participated in the focus group. Main themes were valuable on-boarding process, data entry, process of engaging patients, and benefits of participation. Thirteen patients were interviewed. Themes were good understanding of the registry, positive experience providing data, and value of lay summary and eagerness for annual assessment. Feasibility and data quality of ICRR were demonstrated.