Patient-reported outcomes in adult survivors with single-ventricle physiology

Objectives: Data on patient-reported outcomes (PROs) in patients
with single-ventricle physiology (SVP) are scarce. We
sought (1) to describe the perceived health status, quality of
life, symptoms of anxiety and depression, and sense of coherence
in adult survivors with SVP, (2) to compare PROs across
functional classes, and (3) to compare PROs between patients
and controls.
Methods: A case-control study in two adult congenital
heart programmes with 62 adult survivors with SVP
were matched to 172 healthy controls. A wide range of PROs
were measured using validated questionnaires. The treating
physician classified patients according to the Ability Index.
Results: Patients with SVP have a good functional status. Patients
in Ability Index class I consistently reported the best
scores, similar to those of healthy controls. Negative associations
were found between functional class and outcomes of
perceived health and quality of life. For patients in Ability Index
class II and III, PROs were poorer.
Conclusions: PROs in patients with SVP are generally good.