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
Highlights
- • 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.
Abstract
Objective
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.
Methods
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.
Results
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.
Significance
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.
