Congenital heart defects and health-related quality of life Psychosocial support needs of affected children and adolescents as well as the parents

Background Congenital heart diseases (CHD) occur in around 1% of all neonates. Due to better treatment options, > 90% of those affected survive into adulthood, resulting in approximately 300,000 people with CHD currently living in Germany. Especially those with severe CHD and need for surgery in infancy have a greatly increased risk of developmental/behavioral disorders and impaired health-related quality of life (HrQoL) This results in special needs for rehabilitation, which sometimes remain undetected in the routine clinical care or are recognized too late. Objective The aim of this work is to present e-health methods that can help to improve an early detection of the need for rehabilitation. Material and methods Patient reported outcomes (PRO) are examined with respect to the relevance for documenting the HrQoL in children with CHD and their parents. The project quality of life monitoring (LQM) online and the LQM app developed for the purpose of treatment optimization in children and adolescents with CHD and their parents are presented. Results The PROs facilitate communication in doctor-patient consultations and show a positive effect on psychosocial well-being. Computer-based screening is characterized by a direct feedback of the processed results of the patient survey to the clinician and thus a more time-efficient identification of problematic areas for the patient. A high level of acceptance and user satisfaction have been reported by the patients. Conclusion Regular screening of the HrQoL in children and adolescents with chronic somatic diseases and their parents is becoming increasingly more important in order to identify patients with special rehabilitation needs at an early stage in order to be able to initiate the necessary measures.