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

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

Sharon Chiang  1 , Robert Moss  2 , Mary Anne Meskis  3 , Vanessa Vogel-Farley  4 , Joseph E Sullivan  5 , Anup D Patel  6 , Vikram R Rao  5
Affiliations

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

Sharon Chiang et al. Epilepsy Behav. 2021 Oct.

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.

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Conflict of interest statement

Disclosure of conflicts of interest

RM is the co-founder/owner of Seizure Tracker, LLC, which has received funding from Cyberonics, Courtagen, Engage Therapeutics, Greenwich Biosciences, Neurelis, UCB, Brain Sentinel, Xenon Pharmaceuticals, and grants from Tuberous Sclerosis Alliance. JES serves as a consultant for Encoded Therapeutics, Greenwich Biosciences, Xenon, Epygenix Therapeutics, and the Epilepsy Study Consortium. JES has contracted research with Zogenix, Stoke Therapeutics, Marinus Pharmaceuticals, and Biopharm and has stock options in Epygenix Therapeutics. JES is chair of the PCDH19 Scientific advisory board, Dravet Syndrome Foundation board member, Medical Advisory Board member, and Epilepsy Foundation of Northern California board member. ADP serves as a consultant for Greenwich Biosciences and serves on the advisory board for Neurelis. ADP has research funding from the Pediatric Epilepsy Research Foundation (PERF) and the National Institutes of Health (NIH). ADP performs webinar and educational development for Medscape. VRR has served as a consultant for NeuroPace, Inc., manufacturer of the RNS System. The remainder of the authors report no disclosures relevant to the manuscript.

Figures

Fig. 1.
Fig. 1.
Health-related quality-of-life priorities in (A) language, (B) memory, and (C) cognition. Proportion of adults with IDD-E and adults with epilepsy without IDD rating each item as “critically important to quality of life” (Likert 7–9) on 10-point Likert scale are shown. Error bars denote standard error. Statistically significant differences after controlling the false discovery rate at the 0.10 level and stratified confounder analysis are denoted with a triangle (▼). There were no statistically significant differences after false discovery rate control at the 0.05 level. Abbreviations: IDD-E, intellectual and developmental disability and epilepsy; IDD, intellectual and developmental disability.
Fig. 2.
Fig. 2.
Health-related quality-of-life priorities in (A) seizure unpredictability, (B) seizure burden, and (C) fear of seizures. Proportion of adults with IDD-E and adults with epilepsy without IDD rating each item as “critically important to quality of life” (Likert 7–9) on 10-point Likert scale are shown. Error bars denote standard error. Statistically significant differences after controlling the false discovery rate at the 0.10 level and stratified confounder analysis are denoted with a triangle (▼). There were no statistically significant differences after false discovery rate control at the 0.05 level. Abbreviations: IDD-E, intellectual and developmental disability and epilepsy; IDD, intellectual and developmental disability.
Fig. 3.
Fig. 3.
Health-related quality-of-life priorities in (A) healthcare accessibility and (B) healthcare utilization. Proportion of adults with IDD-E and adults with epilepsy without IDD rating each item as “critically important to quality of life” (Likert 7–9) on 10-point Likert scale are shown. Error bars denote standard error. Statistically significant differences after controlling false discovery rate at 0.05 level and stratified confounder analysis are denoted with an asterisk (*). Abbreviations: IDD-E, intellectual and developmental disability and epilepsy; IDD, intellectual and developmental disability.
Fig. 4.
Fig. 4.
Health-related quality-of-life priorities in family impact. Proportion of adults with IDD-E and adults with epilepsy without IDD rating each item as “critically important to quality of life” (Likert 7–9) on 10-point Likert scale are shown. Error bars denote standard error. Statistically significant differences after controlling false discovery rate at 0.05 level and stratified confounder analysis are denoted with an asterisk (*). Abbreviations: IDD-E, intellectual and developmental disability and epilepsy; IDD, intellectual and developmental disability.
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