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This study evaluates parent perceptions of child health-related quality of life and predictors of parental psychological distress.

January 10, 2026Quality of Life Research0 citations

Finding a new rhythm: child health-related quality of life, parent psychological distress, and unmet needs among families of children with cardiac channelopathies

MMMichelle McElduffNew South Wales Department of Health CTChristian TurnerSydney Children’s Hospitals Network DCDaniel S. J. CostaThe University of Sydney

Key Result

Parents of children with cardiac channelopathies reported an average of 12 unmet needs, with higher parental stress predicting lower child health-related quality of life.

Key Points

This study evaluates parent perceptions of child health-related quality of life and predictors of parental psychological distress.
Conducted a cross-sectional study with parents of children diagnosed with specific cardiac channelopathies.
Measured child health-related quality of life, unmet cardiac care needs, and parental psychological symptoms.
Achieved a response rate of 75% from 68 parents across 45 families.
Parents reported an average of 12 unmet needs related to their child's care.
50% of mothers and 38% of fathers indicated concerns about their child's emotional functioning.
Factors predicting lower child health-related quality of life included lower social support and greater parental stress.
Child out-of-hospital cardiac arrest was the strongest predictor of parental post-traumatic stress.

Structured PICO

Population

68 parents from 45 families of children diagnosed with Long QT Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia, or Brugada Syndrome

Outcome

Child health-related quality of life (HRQOL), unmet cardiac care needs, and parent symptoms of traumatic stress, anxiety, and depressionpatient reported

Parents of children with cardiac channelopathies report high levels of unmet needs and psychological distress, emphasizing the importance of integrated psychosocial screening and care.

Main Result

Absolute Event Rate: 0% vs 0%

Abstract

BACKGROUND: Children with cardiac channelopathies face significant challenges, including exposure to medical trauma, complex genetic testing options, activity restrictions, lifelong surveillance, and increased risk of sudden death. This study assessed parental perceptions of child health-related quality of life (HRQOL) and unmet cardiac care needs, as well as predictors of traumatic stress among parents of children with a cardiac channelopathy. METHODS: Parents of children diagnosed with Long QT Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia, or Brugada Syndrome were invited to participate in a cross-sectional study. Sixty-eight parents from 45 families (response rate: 75%) completed measures assessing child HRQOL, unmet cardiac care needs, and parent symptoms of traumatic stress, anxiety, and depression. RESULTS: Prior to attending their first multidisciplinary arrhythmia clinic, parents reported an average of 12 unmet needs. Half of mothers (50%) and 38% of fathers indicated their child was at-risk in terms of emotional functioning. Having a cardiac implantable electronic device, lower social support, and greater parental psychological stress predicted lower child HRQOL. Child out-of-hospital cardiac arrest was the strongest predictor of parent post-traumatic stress. CONCLUSIONS: Psychosocial screening and access to integrated, trauma-informed, family-centered psychological care should form part of best practice recommendations for children with cardiac channelopathies.

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