Quality of life and disease burden in tuberous sclerosis and comparison with the population with idiopathic autism spectrum disorder: an investigation conducted through questionnaires and clinical data collection in the pediatric population
Despite its lack of validation, the TSCQoL scale was established as an exploratory tool that consistently highlighted, along with the PedsQL, clinical factors that most impact quality of life. Quality of life was low in the TSC population, and this was strongly correlated with neuropsychiatric manifestations and epilepsy. Through comparison with idiopathic ASD, we observed a greater impact of the syndromic condition on disease burden.
Authors
- Alessandra Voci (ORCID: https://orcid.org/0000-0002-6952-8300)
- Massimiliano Valeriani (ORCID: https://orcid.org/0000-0001-6602-103X)
- Martina Proietti Checchi (ORCID: https://orcid.org/0000-0002-7312-2768)
- Giacomo Racioppi
- L E Gialloreti
- Romina Moavero (ORCID: https://orcid.org/0000-0002-6200-060X)
- L. Mazzone
- Mariagrazia Cicala
- Virginia Tonietti
Institutions
- University of Rome Tor Vergata (IT)
- Bambino Gesù Children's Hospital (IT)
- Center for Pain and the Brain (US)
- Istituti di Ricovero e Cura a Carattere Scientifico (IT)
Publication Details
- Journal
- Frontiers in Psychiatry
- Published
- 2026-01-14
- DOI
- https://doi.org/10.3389/fpsyt.2025.1730160
- Primary Topic
- Tuberous Sclerosis Complex Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Ministero della Salute