PM1017: Implementation of a Mental Health Screening Program in Parents/caregivers of Children with Cyanotic Heart Disease

Background: The diagnosis and treatment of pediatric congenital heart disease (CHD) is known to cause significant levels of distress in caregivers, however less is known specifically about caregivers of children with single ventricle CHD. Caregiver stress is exacerbated when hospitalizations and/or surgeries are required, thus as single ventricle CHD patients typically require three surgeries in the first years of life and often have multiple and/or prolonged hospitalizations, higher rates of feeding dysfunction, and neurodevelopmental delays, it is especially important to monitor caregiver levels of depression, anxiety, and stress. This study evaluated a mental health screening protocol for caregivers of pediatric patients with single ventricle CHD to provide holistic and supportive care.

Methods: Parents/caregivers of infants and children with single ventricle CHD were screened for mental distress in both the inpatient and outpatient settings over 10 months (June 2021 - March 2022). The study utilized the DASS-21 questionnaire - a 21 item survey that assesses levels of depression, anxiety, and stress. Ratings are summed for each subscale with higher scores indicating greater distress and converted to a scale of normal, mild, moderate, severe, and very severe. Moderate or greater depression, anxiety, and/or stress levels triggered intervention by the multidisciplinary medical team.

Results: Thirty caregivers were surveyed at least once, yielding a total of 77 surveys (Table 1). Caregivers of pediatric patients with single ventricle CHD displayed significant levels of depression, anxiety, and stress (Table 2). Notably, 31% of completed surveys revealed an elevated level of at least one of the three types of distress, while 40% of unique caregivers reported elevated distress at least once during the survey period. Anxiety was reported in the greatest number of surveys and by the most individual caregivers, and it was the only type of distress to score in the very severe range. Based on our criteria of moderate or above depression, anxiety, or stress requiring intervention, 18% of surveys prompted an intervention and 23% of caregivers required intervention at some point during the study period.

Conclusion: Caregivers of children with single ventricle CHD experience high levels of distress at rates significantly higher than those in the general adult population. Implementation of formal screening programs for caregivers of single ventricle CHD patients should be considered and should evaluate for anxiety alongside depression, as this type of distress was most prevalent in the caregiver population. More research is needed to examine how levels of depression, anxiety, and stress in caregivers are related to variables including social determinants of health, hospitalizations/surgeries, other indicators of severity of child illness, and the stage of the child in single ventricle palliation. Responding to caregiver distress may lead to improved outcomes for pediatric CHD patients and their families.