Research In Practice Blog
Young patients with heart disease experience a host of challenges to their ability to participate in and enjoy age-appropriate activities, which is reflected in well documented differences between their health-related quality of life (HRQOL) compared to peers. Pediatric/congenital cardiac catheterization laboratory (PCCL) procedures are an important part of the effective diagnosis and treatment of many young patients with cardiac disease but necessarily is stressful and carries risk of potential harm. The impact of PCCL procedures on HRQOL has not been previously evaluated.
Study design & findings:
As part of NHLBI funded K23 research, our group performed a prospective cohort study of school age- and adolescent patients undergoing PCCL procedures and evaluated what changes occurred in both cardiac-specific and overall HRQOL, hypothesizing that HRQOL would improve in patients undergoing interventions during their catheterization and that no change would be seen in patients undergoing catheterizations in which no intervention was performed. In addition, a panel of other patient-reported outcomes, evaluating patient state anxiety and depression, optimism, and symptomatology were also applied at baseline to provide a better characterization of factors that influence baseline HRQOL and its responsiveness with catheterization.
A total of 70 patient-parent/guardian dyads with a broad of cardiac conditions, with 54% undergoing diagnostic procedures. As expected, no change in HRQOL was seen after diagnostic procedures. Patient-reported cardiac-specific HRQOL improved at 1- and 3-months. The same changes were not seen in parent/guardian reported cardiac-specific HRQOL or in either patient- or parent/guardian-reported general HRQOL. PROMIS measures of physical function, psychological symptoms, and social function were associated with baseline HRQOL but not with the change from baseline to subsequent HRQOL after catheterization.
Research in Practice Implications:
- Enrollment and evaluation were performed overlapping with the period of maximal impact from COVID which presented unique challenges.
- This study is the first to our knowledge of the short-term impact of minimally invasive procedures on HRQOL in children.
- There is no standard in evaluation of HRQOL between patient- and parent/guardian/proxy-report. The current research highlights that there were distinct differences in the responsiveness of HRQOL between those described by patients and their parent/guardian.
Actionable Insights:
- Clinical: Even in asymptomatic patients there is evidence that HRQOL is improved after transcatheter interventions. It is clinically important to determine if that reflects that we are not eliciting symptoms effectively in clinical practice or if there are other measures of health and well-being that should be evaluated in the care of these patients.
- Research: This demonstrates that cardiac-specific HRQOL is responsive after transcatheter interventions (even in a broad swath of procedures). Incorporating HRQOL in comparative effectiveness should be considered.
Clinical Futures Authors:
Michael L. O'Byrne MD, MSCE and Jonathan B. Edelson MD
Citation: