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

Sharon Chiang; Robert Moss; Mary Anne Meskis; Vanessa Vogel-Farley; Joseph E Sullivan; Anup D Patel; Vikram R Rao

doi:10.1016/j.yebeh.2021.108282

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

Epilepsy Behav. 2021 Oct:123:108282. doi: 10.1016/j.yebeh.2021.108282. Epub 2021 Sep 8.

Authors

Sharon Chiang¹, Robert Moss², Mary Anne Meskis³, Vanessa Vogel-Farley⁴, Joseph E Sullivan⁵, Anup D Patel⁶, Vikram R Rao⁵

Affiliations

¹ Department of Neurology and Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, CA, United States. Electronic address: Sharon.Chiang@ucsf.edu.
² Seizure Tracker, LLC, Springfield, VA, United States.
³ Dravet Syndrome Foundation, Cherry Hill, NJ, United States.
⁴ Dup15q Alliance, Highland Park, IL, United States.
⁵ Department of Neurology and Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, CA, United States.
⁶ Department of Pediatrics and Division of Neurology, Nationwide Children's Hospital, Columbus, OH, United States.

PMID: 34509036
DOI: 10.1016/j.yebeh.2021.108282

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.

Keywords: Core outcomes; Health-related quality of life; Intellectual disability; Patient-reported outcomes; Seizures.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Adult
Caregivers
Child
Cross-Sectional Studies
Developmental Disabilities
Epilepsy* / complications
Epilepsy* / therapy
Humans
Intellectual Disability*
Quality of Life

Grants and funding

UL1 TR001872/TR/NCATS NIH HHS/United States