Why quality of life outcomes matter for children with heart disease?

Dear Sir, One out of five children with heart disease will report a reduced quality of life (QoL).[1] Reduced QoL in children involves an inability to exercise with their peers, increased missed school time, and psychosocial impairment.[1] Improving a child’s exercise capacity has been associated with improved QoL.[2] Our group collected data before and after 12 weeks of cardiac telerehabilitation in a cohort of 42 children with a broad range of heart disease (age range 10–24 years). We found improvements in peak exercise time, VO2 at the anaerobic threshold, and decreased depression score pediatric health questionnaire 9 questionnaire (PHQ-9) correlated with improvements in QoL pediatric quality of life questionnaire (PedsQL) (r = 0.38, P = 0.013 and r = 0.355, P = 0.021, r = 0.332, P = 0.039, respectively). Our findings are consistent with prior research, which also reported a positive impact of pediatric cardiac rehabilitation on QoL.[2] However, in pediatric cardiology, we often have to compete against adult cardiology researchers for funding where the primary outcomes are direct treatment of heart disease or mortality, focusing on quantity rather than quality. While treating the disease and prolonging life is the ultimate goal, we should not ignore the emotional distress caused by surgical interventions and hospitalizations that these children face after therapy and the amount of time it may take to discover the impact of our interventions on morbidity and mortality.[3] Gonzalez et al. published here in Pediatrics in 2021[3] the higher prevalence of mental disease in children with congenital heart disease, including anxiety, depression, and attention deficit disorder. Emotional distress is a major contributor to poor QoL leads to premature death and societal concerns.[4] In children, poor QoL is associated with an increased risk of emotional, behavioral, and psychiatric distress symptoms.[4] Social-emotional distress symptoms include anger, fear, anxiety, depression, isolation, and increased sedentary behavior.[4] Social-emotional distress is associated with increased high-risk sexual behavior and drug use in youth, particularly in children with chronic disease.[5] Exercise decreases anxiety and depression symptoms in children, which may be why it is so impactful on QoL.[1] In addition, children with heart disease report the inability to keep up with their peers as a major factor in decreased QoL.[1] Unlike adults, socializing for children often involves movement and play. This may be why when exercise capacity is improved QoL is improved. Based on prior research, pediatric cardiac rehabilitation will likely improve a child with heart disease’s QoL and this outcome is meaningful to children. However, to get such work funded clinical scientists need to demonstrate the long-term impact of emotional distress from chronic disease and that poor QoL is representative of such distress. Then, we can make the argument that pediatric cardiac rehabilitation reduces symptoms of emotional distress and the emotional and physiological burden treatment and a life with chronic disease brings. We bring this information to light in hopes that clinicians will consider publishing work on the negative impact of cardiac disease on long-term emotional well-being and use these findings to demonstrate the positive impact of interventions on the emotional health of these children as they grow into adulthood. Declaration of patient consent The authors certify that they have obtained all appropriate patient consent forms. In the form the patients have given their consent for their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed. Financial support and sponsorship The data included in this letter were collected through funding from the Department of Pediatrics Innovation Nucleation Fund, Columbia University. Conflicts of interest There are no conflicts of interest.