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

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.

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