Impact of intellectual and developmental disability on quality-of-life priorities in adults with epilepsy

September 14, 2021

SharonChiangaRobertMossbMary AnneMeskiscVanessaVogel-FarleydJoseph E.SullivanaAnup D.PateleVikram R.Raoa

Department of Neurology and Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, CA, United States
Seizure Tracker, LLC, Springfield, VA, United States
Dravet Syndrome Foundation, Cherry Hill, NJ, United States
Dup15q Alliance, Highland Park, IL, United States
Department of Pediatrics and Division of Neurology, Nationwide Children’s Hospital, Columbus, OH, United States


Adults with IDD-E often experience poorer quality of life than those without IDD.
We report HR-QOL priorities among adults with IDD-E and compare to those without IDD.
Patient/caregiver priorities may help inform minimum care standards for adults with IDD-E.



Adults living with intellectual and developmental disability (IDD) and epilepsy (IDD-E) face challenges in addition to those faced by the general population of adults with epilepsy, which may be associated with distinct priorities for improving health-related quality of life (HR-QOL). This study sought to (1) conduct a survey of HR-QOL priorities identified by adults with IDD-E and caregivers, and (2) perform an exploratory cross-sectional comparison to adults with epilepsy who do not have IDD.


This cross-sectional study recruited 65 adults with IDD-E and 134 adults with epilepsy without IDD and caregivers. Using a three-step development process, 256 items from existing quality-of-life scales recommended by the American Academy of Neurology (AAN) were rated by patients/caregivers for their importance as HR-QOL priorities. HR-QOL items identified as critical to the majority of the sample of adults with IDD-E were reported. Health-related quality of life priorities were compared between adults with IDD-E and adults with epilepsy without IDD.


Health-related quality of life was significantly lower in adults with IDD-E. Health-related quality of life domains identified as critical priorities by adults with IDD-E included seizure burden, anti-seizure medication side effects, seizure unpredictability, and family impact. Priorities for improving HR-QOL differed between adults with and without IDD-E, with concerns about family impact, difficulty finding appropriate living conditions, inadequate assistance, and difficulty transitioning from pediatric-to-adult care valued significantly more among those with IDD-E.


Intellectual and developmental disability is an important determinant of HR-QOL among adults with epilepsy. We report HR-QOL priorities identified by adults with IDD-E and their caregivers. These results may help epilepsy clinicians and researchers develop tailored strategies to address priorities of the patient with IDD-E/caregiver community.

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