ArticleBrain and behavior2025
Life Beyond Childhood: Insight Into the Lived Experience of 91 Adults With KBG Syndrome Through an Online Patient/Caregiver-Reported Co-Produced Questionnaire.
Article in Brain and behavior, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Case Report: Sustained Cognitive Improvement and Reversible Brain Hypoperfusion in the Context of Posterior Fossa Arachnoid Cyst Shunting Procedure in KBG Syndrome.Cerebellum (London, England) · 2026Article
- How do clinician and parent-reported data differ? An analysis of similarity and difference in the datasets from a cross-syndrome genetics cohort study (GenROC).Journal of medical genetics · 2026Article
- Recognizing KBG syndrome in pediatric practice: a case series highlighting phenotypic variability and diagnostic clues.Frontiers in pediatrics · 2026Article
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Authors and funding
9 authors.
Funding
Abstract
purposeKBG syndrome (KBGS) is a rare neurodevelopmental syndrome. We aimed to study the impact of KBGS in adulthood as reported by individuals with KBGS and their families/caregivers, thereby exploring aspects of everyday life underreported by healthcare professionals.
methodsWe co-produced an online questionnaire for adults with KBGS and their families/caregivers. Participants were recruited via the KBG Foundation, an American-based charity supporting individuals with KBGS and their families worldwide, and other international collaborators.
resultsThere were 91 responses for analysis, across the age range of 16-86 years. Respondents described a range of living arrangements, education, employment, leisure activities, and relationships. A higher proportion of 45-54year-olds had achieved independent living skills such as driving and grocery shopping compared to the younger age groups. None of the participants who were experiencing seizures lived independently. We described high rates of psychiatric comorbidities, behavioral difficulties, sleep problems, seizures, visual and hearing problems, dental and skeletal issues, and a higher than expected cardiovascular and gastrointestinal burden of disease.
conclusionThis study provides new insights into the everyday life of adults with KBGS, along with high rates of comorbidities that continue to impact quality of life into adulthood, with implications for medical care.
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