What is PC⁴ PRO?
The Pediatric Cardiac Critical Care Consortium (PC⁴) and Cardiac Networks United are introducing a Patient-Reported Outcomes (PRO) Module to collect and analyze data directly from patients and their family members. PRO enables a longitudinal picture of health by engaging patients beyond the hospital setting and regardless of the location of clinical follow-up. Children’s hospitals and centers participating in PC⁴ can now begin collecting PROs to gain a more comprehensive view of the quality of care for patients with pediatric and congenital cardiovascular disease.
What are the benefits of participating in PRO?
By participating in PRO, providers will drive deeper engagement with patients and their parents or primary caregivers to gain a longitudinal view into important outcomes such as survival, re-interventions/hospitalizations, burden of disease, and quality of life. The PRO module is easy to use, and contains many automated features to aid in reducing data collection burden at participating hospitals. Standardized data collection across centers will allow for benchmarking and advancement of long-term outcomes. The data collected can also be used for reporting to third parties who request longitudinal outcomes information such as certain payers and organizations rating heart center performance.
What type of data are collected?
Vital status, burden of disease/morbidities, re-interventions or hospitalizations, and quality of life (collected via the PedsQL) data are collected. All questions on the PedsQL are age customized and have been pilot tested and refined. Completing the questions takes no more than 15 minutes, often less.
Which patients are included?
Data are currently collected on the 10 STS-defined benchmark operations which span the spectrum of disease complexity.
What type of personnel/resources are required?
The module has many automated features to reduce FTE burden.
Pilot testing to date at two large volume surgical centers (>800 total cases/year) has suggested ~ 0.5 FTE of coordinator time was needed during the start-up phase, and ~ 0.25 thereafter.
Typically half of eligible patients will respond electronically via the e-mail link, significantly reducing the number of patients a coordinator has to contact by phone.
If available, a database programmer is helpful to engage during the start-up phase to aid with automating imports of patient contact information, which may be customized by center depending on the type of EHR etc.
How do patients provide data?
Patients and family members will respond to electronic surveys sent to them via email. This email will include a pre-authenticated link to provide longitudinal information at regular intervals after surgery. PC⁴ PRO aims to have patients complete surveys annually on their birthdays. Phone and mail can be used as secondary methods of contact. The process of identifying eligible patients and collecting data is automated as much as possible to reduce data collection burden and personnel required.
How do I access my PRO data?
PC⁴ PRO data are displayed alongside PC⁴ data in real time as they are collected in the online ArborMetrix platform, which is available 24/7. Filters, patient-level drill downs, trends over time, and benchmarking to other centers are all available.
What is the cost to participate in PRO?
Hospitals and centers who participate in the registry pay an annual subscription fee of $7,500.
Download a PRO Brochure (in PDF format)
If you are a patient and wish to learn more about PC⁴ PRO, please click on the following link which provides a one page summary of PC⁴ PRO.