Parent-Reported Symptoms and Perceived Effectiveness of Treatment in Children Hospitalized with Advanced Heart Disease

UMMS Affiliation

School of Medicine; Senior Scholars Program

Publication Date


Document Type



Cardiology | Cardiovascular Diseases | Medical Education | Pediatrics


OBJECTIVE: To characterize parent-reported symptom burden and effectiveness of symptom management in children hospitalized with advanced heart disease.

STUDY DESIGN: Prospective survey study of 161 parents whose child was admitted to a single institution with AHD between March 2018 and February 2019 using the Survey about Caring for Children with Heart Disease.

RESULTS: Of the 161 patients, 54% were under 2 years old with a diagnosis of single ventricle physiology (39%), pulmonary hypertension (12%), and other congenital heart disease (28%). Over half (56%) of parents reported that their child was experiencing a high degree ('a great deal'/'a lot') of symptoms. The most frequently reported symptoms were pain (68%), fatigue (63%), and breathing difficulties (60%). Of the symptoms that were treated, parents perceived successful treatment to be least likely for their child's sleep disturbance (24%), depression (29%), and fatigue (35%). Parents who reported their child's functional status as NYHA class III/IV were more likely to report that their child was experiencing 'a great deal' of symptoms, compared with those who reported class I/II (51% vs. 19%, p<0.001). Parents who reported their child was experiencing a high degree of suffering from fatigue were also more likely to report a high symptom burden (P < .001).

CONCLUSIONS: Parents of children with AHD reported high symptom burden with a broad spectrum of symptoms. Parents reported fatigue and psychiatric symptoms frequently and rarely reported treatment as successful. Parents' view of their child's symptom burden was concordant with their perception of their child's functional status.


cardiomyopathy, children, congenital heart disease, fatigue, heart failure, patient reported outcomes, pediatric, symptoms

DOI of Published Version



Molloy MA, DeWitt ES, Morell E, Reichman JR, Brown DW, Kobayashi R, Sleeper LA, Elia EG, Samsel C, Blume ED. Parent-Reported Symptoms and Perceived Effectiveness of Treatment in Children Hospitalized with Advanced Heart Disease. J Pediatr. 2021 Jul 1:S0022-3476(21)00659-4. doi: 10.1016/j.jpeds.2021.06.077. Epub ahead of print. PMID: 34217766.

Journal/Book/Conference Title

The Journal of pediatrics


Meaghan A. Molloy participated in this study as a medical student in the Senior Scholars research program at the University of Massachusetts Medical School.

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