†Deceased (see In Memoriam at the end of this document) *Representative of the Pediatric and Congenital Electrophysiology Society (PACES) ‡Representative of the European Heart Rhythm Association (EHRA) xRepresentative of the Society of Thoracic Surgeons (STS) {Representative of the American College of Cardiology (ACC) #Representative of the Latin American Heart Rhythm Society (LAHRS) **Representative of the Infectious Diseases Society of America (IDSA) ‡ ‡Representative of the American Heart Association (AHA) xxRepresentative of the American Society of Anesthesiologists (ASA) {{Representative of the Asia Pacific Heart Rhythm Society (APHRS)
Background
The value of patient-reported outcomes (PRO) is increasingly recognized in patient-centered care. Longitudinal data collection may be challenging and cost prohibitive. Automation of PRO collection may complement routine clinical follow-up, especially for procedures aiming to improve quality of life, such as atrial fibrillation (AF) ablation.
Methods
We aimed to develop a fully automated platform to collect PRO and evaluate its first clinical application in a prospective cohort of AF ablation. The duration of follow-up and data availability were assessed with automated PRO and routine follow-up versus routine follow-up alone (primary outcome). Quality of life and healthcare utilization (secondary outcomes) by PRO were assessed.
Results
Between 2013 and 2016, 2175 patients were eligible to receive 10 903 PRO assessment invitations, and the automated platform sent all invitations as programmed. More follow-up assessments were obtained with automated PRO and routine follow-up compared with routine follow-up alone (12 859 versus 10 248;
P
<0.0001) which allowed longer duration of follow-up (378 versus 217 days, 74% increase;
P
<0.0001). By automated PRO, a large number of disease-specific variables were collected and showed improvement in quality of life (baseline median AF symptom severity score AFSSS of 12 [6–18] and ranged between 2 and 3 on subsequent assessments;
P
<0.0001). This improvement was also true for each of the AFSSS individual components (
P
<0.0001). In PRO, there was a significant reduction in AF burden (such as frequency and duration of episodes;
P
<0.0001) and associated healthcare utilization (including emergency visits and hospitalizations;
P
<0.0001) after the ablation procedures.
Conclusions
A fully automated system for PRO collection enhanced clinical follow-up and allowed collection of disease-specific data when applied in a prospective cohort of AF ablation.
Public reporting of health care data continues to proliferate as consumers and other stakeholders seek information on the quality and outcomes of care. Medicare’s Hospital Compare website, the U.S. News & World Report hospital rankings, and several state-level programs are well known. Many rely heavily on administrative data as a surrogate to reflect clinical reality. Clinical data are traditionally more difficult and costly to collect, but more accurately reflect patients’ clinical status, thus enhancing the validity of quality metrics. We describe the public reporting effort being launched by the American College of Cardiology and partnering professional organizations using clinical data from the National Cardiovascular Data Registry (NCDR) programs. This hospital-level voluntary effort will initially report process of care measures from the percutaneous coronary intervention (CathPCI) and implantable cardioverter-defibrillator (ICD) registries of the NCDR. Over time, additional process, outcomes, and composite performance metrics will be reported.
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