Life Beyond Childhood: Insight Into the Lived Experience of 91 Adults With KBG Syndrome Through an Online Patient/Caregiver-Reported Co-Produced Questionnaire.

ABSTRACT:

Purpose

KBG 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.

Methods

We 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.

Results

There 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 45-54y

SUBMITTER: Low KJ 

PROVIDER: S-EPMC12066804 | biostudies-literature | 2025 May

REPOSITORIES: biostudies-literature