Rationale and design of Congenital Heart Disease (CHD) PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience
Authors' conclusion
With surveys from 3,133 participants from across the U.S., CHD PULSE is poised to provide keen insights into the lifelong journey of those living with CHD, extending beyond mere survival.
Study context
- Population
- Adults aged 18 and older with a history of at least 1 intervention for CHD at 1 of 11 US centres in the Pediatric Cardiac Care Consortium, September 2021 to April 2023eligible
- Participants
- 14,322 adults
- Exposure
- Adults with CHD vs sibling controls
- CHDn = 3,133
- Sibling controlsn = 326reference
- Outcome
- Response and participant characteristics
Methodological detailssurvey, 11 US centres
- Survey
- 11 US centres
Main finding
As reported in the abstract
| Group | Value | Median age | Female | Non-Hispanic White |
|---|---|---|---|---|
| CHD | 21.9% | 32.8 years (IQR 27.2 to 39.7; range 20.1 to 82.9) | 55.1% | 87.1% |
| Sibling controls | 47.2% |
Value
CHD21.9%
Sibling controls47.2%
Median age
CHD32.8 years (IQR 27.2 to 39.7; range 20.1 to 82.9)
Sibling controlsNot reported in the abstract
Female
CHD55.1%
Sibling controlsNot reported in the abstract
Non-Hispanic White
CHD87.1%
Sibling controlsNot reported in the abstract
Observational data: associations, not effects.
Original publication
Rationale and design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience. Am Heart J. Published 17 September 2024. doi:10.
Summarised from the published abstract; every number is checked against it