Abstract
Purpose Patient perceived effectiveness of care is increasingly recognized as a measure of quality. There is little data on the frequency or treatment of symptoms in children with advanced heart disease. We sought to evaluate parental report of symptoms and successful treatment of those symptoms in their children hospitalized with advanced heart disease (AHD). Methods We performed a prospective cohort survey of parents of children hospitalized with AHD at a single institution. Parents were approached if their child was (1) admitted for > 7 days with single ventricle physiology, pulmonary vein stenosis, or pulmonary hypertension, or (2) had ICU stay >30d, mechanical circulatory support, >3 surgeries/ admissions in the last year, mechanical ventilator support >14d, or listed for heart transplant. Information was collected regarding symptoms, suffering from those symptoms, and whether symptoms were addressed and treated by medical providers. Results 112 parents participated, with the majority ward admissions (60%). 51% of parents reported that their child was experiencing ‘a great deal’ or ‘a lot’ of symptoms related to their heart disease. Frequent symptoms reported included: fatigue (76%), feeding difficulties (67%), irritability (66%), pain (65%), and dyspnea (64%). The percentage suffering from the symptoms was fairly consistent across individual symptoms (37-47%). The least often treated symptoms were sadness/depression (47%), fatigue (49%), and sleep disturbances (52%), and these were some of the least likely to be reported as successfully treated (31-33%) (Fig). Conclusion Fatigue, pain, dyspnea, irritability and feeding difficulties are the symptoms most frequently identified by parents caring for children with AHD in the hospital setting, with pain and dyspnea most often being the symptoms treated successfully. Our data suggest that cardiologists may inadequately assess and treat mental health symptoms associated with hospitalization for advanced heart disease.
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