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

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.

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.

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.

Psychosocial screening and access to integrated, trauma-informed, family-centered psychological care should form part of best practice recommendations for children with cardiac channelopathies.