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

Launched by UNIVERSITY HOSPITAL, STRASBOURG, FRANCE · Oct 3, 2023

Keywords

ClinConnect Summary

The SeeMyLife clinical trial is studying the real-life experiences of children and teenagers with rare eye diseases that can lead to severe vision loss or blindness. The goal is to understand how these conditions affect their daily lives, emotional well-being, and social interactions. By using surveys and personal interviews, the trial aims to gather important information from both the young patients and their caregivers. This will help create better tools for measuring the quality of life for children with visual impairments, ultimately leading to improved care and support for them and their families.

To participate in this trial, children aged 8 to 18 with specific levels of visual impairment, as defined by the World Health Organization, and their parents or caregivers are eligible. Participants can expect to share their feelings and experiences related to their vision challenges through surveys and interviews. This research is crucial as it will not only enhance our understanding of the impact of these eye diseases but will also help develop more effective treatments and support systems tailored to the needs of these children and their families.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Children (age 8-12) and teenagers (age 13-18) with various levels of visual impairment defined according to World Health Organization (WHO) International Classification of Diseases (ICD) 10 - WHO ICD 10 \[best-corrected visual acuity ≤ 0.3 decimal or ≤ 6/18\], and their parents/caregivers.
• Exclusion Criteria:
• * Children, teenagers, and caregivers:
• • 1. who lack the ability to respond in a reliable way to the questions on how they feel about their visual impairment (patients with mild intellectual or cognitive deficiency may be able to reply accurately as opposed to cases with severe intellectual disability)
• • 2. with functional or non-ophthalmic reasons of visual impairment
• • 3. unable to provide consent/assent;
• • 4. who do not speak/read the language