Assessing health-related quality of life in pediatric patients with chronic health conditions across and beyond Europe

Health-related quality of life (HrQoL) is a key health outcome in epidemiological and clinical studies. Despite the recognition of its potential benefits for facilitating patient-physician communication, improving patient satisfaction, identifying hidden psychosocial morbidities and facilitating clinical decision-making, HrQoL measures are rarely used in pediatric clinical practice because of lack of time and human/financial resources.

The cross-cultural adaptation of existing HrQoL measures and the application of modern information technologies (IT)/e-health to the measurement of patient- and parent-reported HrQoL in pediatric healthcare settings (e.g., computer-adaptive testing [CAT]) represent an innovative approach to overcome these barriers, by providing reliable and valid HrQoL assessments, while decreasing the burden of respondents and healthcare professionals. Although CAT systems for specific countries are already available, a cross-cultural CAT to be used in Portugal and other European and non-European countries is still missing.

Based on the extensive work derived from the KIDSCREEN/DISABKIDS projects and further worldwide research with these instruments (available publications and datasets), this project intends to examine the cross-cultural psychometric performance of the KIDSCREEN/DISABKIDS 3-level measurement system and to develop/evaluate an innovative cross-cultural CAT system for HrQoL assessment in children/adolescents with chronic health conditions/disabilities. The results will contribute to the incorporation of routine pediatric HrQoL assessment in research/clinical settings.