The association of single ventricle morphology with long term quality of life among survivors: A report from congenital heart disease project to understand lifelong survivor experience (congenital heart disease (CHD) PULSE)
Authors' conclusion
Ventricular morphology was not associated with differences in long-term outcomes. Adults with SV CHD have medical, neurocognitive, and socioeconomic differences compared to siblings, but similar PROMIS scores compared to the general population.
Study context
- Population
- Adults with single ventricle (SV) congenital heart disease (CHD) interventions and siblings226 SV patients and 40 siblings · SV patients 226 · siblings 40
- Participants
- 146 / 80 / 40
- Exposure
- left vs right ventricular morphology; SV CHD patients vs siblings
- left ventricularn = 146
- right ventricularn = 80
- siblingsn = 40
Methodological detailssurvey conducted from 2021 to 2023, 11 US Pediatric Cardiac Care Consortium centers
- Survey conducted from 2021 to 2023
- 11 US Pediatric Cardiac Care Consortium centers
Main finding
As reported in the abstract
Outcomes by ventricular morphology
- No outcome differences were found between left and right ventricular groups
Observational data: associations, not effects.
Further findings
Medical comorbidities, future health concerns, disability benefits, work affected by health (SV patients vs siblings)
- SV patients reported more medical comorbidities
- P < 0.001
- SV patients reported more future health concerns
- 0.008
- SV patients reported more disability benefits
- P < 0.001
- SV patients reported more work affected by health
- P < 0.001
College/graduate degrees and employment (siblings vs SV patients)
- Siblings had higher rates of college/graduate degrees
- P = 0.002
- Siblings had higher rates of employment
- P = 0.044
Education and employment among SV patients
- SV patients completed high school
- 95.6%
- SV patients had college/graduate degrees
- 45.6%
- SV patients were employed
- 73.9%
Patient-Reported Outcomes Measurement Information System (PROMIS) scores (SV patients vs siblings)
- SV patients had lower PROMIS scores for global mental health and physical function
- Similar scores for global physical health, cognitive function, anxiety, depression, and ability to participate in social roles
Original publication
The association of single ventricle morphology with long term quality of life among survivors: A report from congenital heart disease project to understand lifelong survivor experience (CHD PULSE). Am Heart J. Published 20 June 2026. doi:10.
Summarised from the published abstract; every number is checked against it