Quality of Life Monitoring Online for Optimizing the Care of Children and Adolescents Suffering From Heart Disease

Objectives: The aim of the study is to optimize the early detection of promotion/rehabilitation needs and to improve the quality of life based on patient-reported outcomes, using a computer-based application (LQM-App).

Methods: In the multicenter study, 520 children/adolescents with congenital heart disease (0–17 years) are screened using the LQM application (baseline). Participants with conspicuous findings are included in the randomized controlled trial (RCT) with intervention group (LQM) and observation group (TAU). The LQM group receives a subsequent medical consultation including forwarding conspicuous findings to the treating pediatricians, with the aim of initiating further diagnostics/therapy. Six months after questioning, participants of the RCT receive a semistandardized telephone interview on the content of the doctor's talk and recommendations received. A follow-up examination takes place after 12 months. The screening tools include disease-specific quality of life (PCQLI), behavioral problems (SDQ), child developmental problems (ADHD), parental psychological stress questionnaire (PHQ-2), and symptoms of anxiety (GAD-7). Conspicuous findings are defined by cut-off values as indicative of clinical problems. In addition, sociodemographic data and medical information on the heart disease are collected.

Result: So far, n = 266 participants were screened (participation rate 80%). Of these, n = 116 (44%) showed a conspicuous finding (baseline) in at least one screening instrument. In terms of the severity of heart disease, 18% of participants with conspicuous findings have a mild, 45% represent moderate and 37% a severe heart disease. With regard to the medical prognosis, patients with conspicuous findings have an uncertain prognosis in 63% and a good prognosis in 37%. In terms of exercise tolerance (NYHA classification), 42% of the conspicuously tested patients are in NYHA I, 47% in NYHA II, 10% in NYHA III, and 1% in NYHA IV.

Conclusion: Initial follow-up observations indicate good acceptance and feasibility of the screening. The percentage of conspicuous findings is higher than expected. Severity of heart disease, medical prognosis, and exercise tolerance are risk factors. Detailed statistical analysis (intention to treat) has to be done after finishing the recruitment.

Publication History

Article published online:
21 February 2021