JMIR Publications

ABSTRACT

Background:

Mitral valve prolapse (MVP) is a common valvulopathy associated, in a minority of cases, with heart failure, severe mitral regurgitation (MR), and sudden arrhythmic death. Digital tools hold promise for faster and more efficient recruitment of study subjects into a large-scale MVP Registry.

Objective:

This study sought to evaluate the feasibility of surveying participants in an existing e-Cohort to identify and clinically characterize MVP cases based on self-reporting, and to recruit them in an MVP Registry at the University of California, San Francisco.

Methods:

We surveyed Northern Californian participants of the Health eHeart (HeH) Study, a large e-Cohort utilizing the Eureka digital research infrastructure, about a prior diagnosis of MVP. MVP positive respondents were asked to provide relevant medical records to confirm their eligibility and were invited to enroll in an MVP Registry if evidence of MVP was confirmed. A follow-up survey was sent after 1 month and after 5 years to collect data about clinical outcomes, including arrhythmias and need for mitral valve repair.

Results:

The survey was delivered to 5,746 participants, and 520 completed responses were collected. A prior diagnosis of MVP was self-reported in 85 responses (16%). Echocardiograms were obtained from 44 of these participants (52%), and evidence of MVP was confirmed in 28 individuals (33%) who all joined the registry. Participants with more severe MR had a higher number of correct responses regarding both MVP (OR: 10.58, 95% CI: 3.58 – 63.04, p = 0.0007) and MR diagnosis (OR: 4.86, 95% CI: 2.11 – 16.14, p = 0.002). Longitudinal data was available from most patients through responses to a follow-up survey sent one month and 5 years later (64% and 68% of the MVP confirmed respondents, respectively). Of the 14 patients with electronic health records available, self-reported diagnosis of arrhythmia was correct in 75%.

Conclusions:

E-Cohort methods with self-reported clinical data can be used to prescreen candidates fo r a research study of MVP. These methods can rapidly identify and retain, among many cases of benign MVP, the minority with clinically relevant presentations such as significant MR and ventricular arrhythmias. These cases may be missed, especially when asymptomatic, by small-scale clinic-based recruitment or family screening methods.