Holistic Mixed Approaches to Capture the Real Life of Children With Rare Eye Diseases

"A Mixed Methods Research (MMR) using quantitative (QUAN) Vision Related-QoL (VR-QoL = FVQ-CYP and VQoL-CYP) tools and psychosocial PEM-CY, and qualitative (QUAL) socio-anthropologic investigations can capture reliably children's and teenagers' Patient-Reported Outcome (PRO).~The QUAN study is a cross-sectional study including short-term re-test repetition (children/teenagers only) using the following PROMs for children/teenagers:~1. Self-reported questionnaires for patients (FVQ-CYP and VQoL-CYP)~2. For caregivers: PEM-CY questionnaires~The QUAL study will rely on the following instruments:~1. Semi-directive interviews,~2. Focus groups,~3. Field observation."