O’Byrne ML, Sharma P, Huang J, Smith CL, Tang J, Callahan R, Edelson JB, Dori Y, Gillespie MJ, Rome JJ, Glatz AC.
Am Heart J. 2024 Dec 4;281:71-83. doi: 10.1016/j.ahj.2024.11.017. Online ahead of print.
PMID: 39643098
Commentary by:
Dr. Ryan Romans (Kansas City, MO), section editor of Congenital Heart Disease Interventions Journal Watch:
Take-home Points:
- Investigation of the outcomes of transcatheter interventions has thus far focused on technical success and procedural safety.
- This study suggests that cardiac catheterizations (especially interventional procedures for simple congenital heart disease) have the potential to improve patient and family quality of life.
- Further multi center studies to better understand psychosocial outcomes in the extremely vulnerable congenital and acquired heart disease population are needed to better understand how to support these patients and families.
Studies on the outcomes of pediatric and congenital cardiac catheterization lab (PCCL) procedures have historically focused on technical success and safety. However, these studies do not capture the impact of PCCL procedures on patient symptoms, exertional capacity, or psychological stress that play a large role in overall quality of life. Health related quality of life (HRQOL) is a patient-reported metric (PRM) that measures an individual’s ability to participate in age-appropriate activities and derive satisfaction from them. It is known the children with heart disease have lower HRQOL compared with healthy controls. However, the impact of procedures on HRQOL in symptomatic children has not been studied.
A single center prospective cohort study over a 5-year period (2017-2022) screened 530 patients (age 8-18) and parents of which 70 consented and met inclusion criteria. Review of the patients’ medical record was used to obtain clinical data. HRQOL and other PRM (collected to provide insight into potential covariates for HRQOL) were obtained at baseline, with HRQOL also obtained within 24 hours of the procedure, 30 ± 7 days, and 90 ± 14 days using the Pediatric Cardiac Quality of Life Index (PCQLI) and Pediatric Quality of Life Index (PEDSQL) total scores score. The HRQOL surveys were answered by both patients and parents. Other clinical factors the others suspected would influence HRQOL independently outside of the catheterization were also collected (including cardiac diagnosis, which was described as simple unrepaired shunt lesion, simple biventricular repair, complex biventricular repair, single ventricle palliation, s/p heart transplant, pulmonary hypertension, and other diagnoses). Of the 70 patients in the study, 54% underwent diagnostic catheterizations, 29% were asymptomatic and underwent interventions, and 17% were symptomatic and underwent interventions. Those who underwent diagnostic catheterizations were more likely to be s/p heart transplant, have pulmonary hypertension, or to have undergone single ventricle palliation while those undergoing interventional procedures were more likely to have unrepaired simple shunts (such as an ASD or PDA) and complex biventricular CHD. In the interventional group, those with more complicated forms of CHD were more likely to be symptomatic. There were not any significant differences in baseline PCQLI and immediate post catheterization. In those undergoing diagnostic catheterizations, there was a modest trend towards higher PCQLI, though this was not statistically significant. In those who underwent an intervention, patient PCQLI increased significantly from baseline to 3 months post procedure, though this was not seen in the parent/guardian surveys. Interestingly, the increase was more prevalent in those who were asymptomatic at baseline, both in patient and parent/guardian surveys. The PEDSQL scores generally increased from baseline to follow up in both the patient and parent surveys.
This study is the first to investigate the impact of cardiac catheterizations on quality of life in children with heart disease. While not all surveys showed statistical significance and there was some discrepancy in patient and parent surveys, this study suggests improvement in quality-of-life metrics in those undergoing interventional procedures. While this is encouraging, the number of patients in this study is inadequate to draw broad sweeping conclusions, especially given that we care for such a homogenous patient population. While this study was not able to achieve recruitment levels sufficient to provide robust statistical data, it should serve as a beginning for the interventional pediatric cardiology community to recognize that while evaluating outcomes (how well we are doing) is important it does not tell the whole picture. We should also strive to understand how our procedures impact our patients’ quality of life (how well they are doing). Until we understand this we will not be able to provide the best psychosocial support possible for this vulnerable patient population and their families.
