The experience of fathers of children hospitalised with advanced heart disease.

Background: There are little reported data on the perspectives of fathers caring for children with chronic conditions. Although survival of children with advanced heart disease has improved, long-term morbidity remains high. This study describes the experience and prognostic awareness of fathers of hospitalised children with advanced heart disease.

The family burden of paediatric heart disease during the chronic phase of illness.

Background: CHD is a lifelong condition with a significant burden of disease to patients and families. With increased survival, attention has shifted to longer-term outcomes, with a focus on social determinants of health. Among children with CHD, socioeconomic status is associated with disparities in outcomes.

Living with Congenital Aortic Stenosis: Exercise Restriction, Patterns of Adherence, and Quality of Life.

Modern consensus panel guidelines recommend restriction from most organized sports for patients with moderate or severe aortic stenosis (AS). However, there is little published data on how frequently physicians deviate from guidelines, how well patients adhere to exercise restrictions, or the effect of restriction on patient-reported quality of life. In this study, we surveyed 93 subjects with AS and their cardiologists regarding participation in organized sports, physical activity, weightlifting, and exercise restriction.

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 advanced heart disease 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%).

Parent and Physician Understanding of Prognosis in Hospitalized Children With Advanced Heart Disease.

Background The unpredictable trajectory of pediatric advanced heart disease makes prognostication difficult for physicians and informed decision-making challenging for families. This study evaluated parent and physician understanding of disease burden and prognosis in hospitalized children with advanced heart disease. Methods and Results A longitudinal survey study of parents and physicians caring for patients with advanced heart disease age 30 days to 19 years admitted for ≥7 days was performed over a 1-year period (n=160 pairs).

Incidence and Predictors of Clinically Important and Dangerous Arrhythmias During Exercise Tests in Pediatric and Congenital Heart Disease Patients.

Objectives: This study quantified the incidence of arrhythmias during pediatric exercise stress tests (ESTs) and evaluated criteria to identify patients at risk of clinically important arrhythmias.

Background: The incidence of clinically important arrhythmias during pediatric ESTs and criteria for identifying high-risk patients are poorly characterized.

Methods: A retrospective review of ESTs performed from 2013 to 2015 was studied.