The role of illness uncertainty in the relationship between disease knowledge and patient-reported outcomes among adolescents and adults with congenital heart disease.

The study measured everything at one time, so it cannot show whether uncertainty caused distress, whether distress increased uncertainty, or whether knowledge affected either. Participants were mostly from one racial group and were recruited from two cardiology clinics, so the findings may not apply broadly. Some participants were contacted twice because new measures were added after data collection began, creating a time gap between parts of the assessment. The disease knowledge measure had limited internal consistency, especially for sex-specific general knowledge items, and risk-related knowledge consistency could not be calculated. The uncertainty scale had not previously been used with adults older than 18, although its internal consistency was acceptable in this sample. The study did not test an intervention, so it cannot say that reducing uncertainty or changing education improves outcomes.

Do not conclude that giving patients more risk information will improve emotional well-being. In this study, greater knowledge of risks was associated with poorer emotional quality of life and higher anxiety, especially when illness uncertainty was high, and the design cannot show cause.