Melanie D Whittington1, Kelly G Knupp2, Gina Vanderveen2, Chong Kim1, Arnold Gammaitoni3, Jonathan D Campbell4. 1. Department of Clinical Pharmacy, University of Colorado Anschutz Medical Campus, Aurora, CO, USA. 2. School of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, USA. 3. Zogenix, Inc., Emeryville, CA, USA. 4. Department of Clinical Pharmacy, University of Colorado Anschutz Medical Campus, Aurora, CO, USA. Electronic address: jon.campbell@ucdenver.edu.
Abstract
OBJECTIVE: The objective of this study was to estimate the annual direct and indirect costs associated with Dravet Syndrome (DS). METHODS: A survey was electronically administered to the caregivers of patients with DS treated at Children's Hospital Colorado. Survey domains included healthcare utilization of the patient with DS and DS caregiver work productivity and activity impairment. Patient healthcare utilization was measured using modified questions from the National Health Interview Survey; caregiver work productivity and activity impairment were measured using modified questions from the Work Productivity and Activity Impairment questionnaire. Direct costs were calculated by multiplying the caregiver-reported healthcare utilization rates by the mean unit cost for each healthcare utilization category. Indirect costs included lost productivity, income loss, and lost leisure time. The indirect costs were a function of caregiver-reported hours spent caregiving and an hourly unit cost. RESULTS: The survey was emailed to 60 DS caregivers, of which 34 (57% response rate) responded. Direct costs on average were $27,276 (95% interval: $15,757, $41,904) per patient with DS. Hospitalizations ($11,565 a year) and in-home medical care visits ($9894 a year) were substantial cost drivers. Additionally, caregivers reported extensive time spent providing care to an individual with DS. This caregiver time resulted in average annual indirect costs of $81,582 (95% interval: $57,253, $110,151), resulting in an average total annual financial burden of $106,378 (95% interval: $78,894, $137,906). CONCLUSION: Dravet Syndrome results in substantial healthcare utilization, financial burden, and time commitment. Establishing evidence on the financial burden of DS is essential to understanding the overall impact of DS, identifying potential areas for support needs, and assessing the impact of novel treatments as they become available. Based on the study findings, in-home visits, hospitalizations, and lost productivity and leisure time of caregivers are key domains for DS economic evaluations. Future research should extend these estimates to include the potential additional healthcare utilization of the DS caregiver.
OBJECTIVE: The objective of this study was to estimate the annual direct and indirect costs associated with Dravet Syndrome (DS). METHODS: A survey was electronically administered to the caregivers of patients with DS treated at Children's Hospital Colorado. Survey domains included healthcare utilization of the patient with DS and DS caregiver work productivity and activity impairment. Patient healthcare utilization was measured using modified questions from the National Health Interview Survey; caregiver work productivity and activity impairment were measured using modified questions from the Work Productivity and Activity Impairment questionnaire. Direct costs were calculated by multiplying the caregiver-reported healthcare utilization rates by the mean unit cost for each healthcare utilization category. Indirect costs included lost productivity, income loss, and lost leisure time. The indirect costs were a function of caregiver-reported hours spent caregiving and an hourly unit cost. RESULTS: The survey was emailed to 60 DS caregivers, of which 34 (57% response rate) responded. Direct costs on average were $27,276 (95% interval: $15,757, $41,904) per patient with DS. Hospitalizations ($11,565 a year) and in-home medical care visits ($9894 a year) were substantial cost drivers. Additionally, caregivers reported extensive time spent providing care to an individual with DS. This caregiver time resulted in average annual indirect costs of $81,582 (95% interval: $57,253, $110,151), resulting in an average total annual financial burden of $106,378 (95% interval: $78,894, $137,906). CONCLUSION: Dravet Syndrome results in substantial healthcare utilization, financial burden, and time commitment. Establishing evidence on the financial burden of DS is essential to understanding the overall impact of DS, identifying potential areas for support needs, and assessing the impact of novel treatments as they become available. Based on the study findings, in-home visits, hospitalizations, and lost productivity and leisure time of caregivers are key domains for DS economic evaluations. Future research should extend these estimates to include the potential additional healthcare utilization of the DS caregiver.
Authors: Barbara C Jobst; Elinor Ben-Menachem; Kevin E Chapman; Aradia Fu; Alica Goldman; Lawrence J Hirsch; Lara E Jehi; Eric H Kossoff; Madona Plueger; Jong M Rho; Catherine A Schevon; Shlomo Shinnar; Michael R Sperling; Timothy A Simeone; Janelle L Wagner; Fred Lado Journal: Epilepsy Curr Date: 2019-05-03 Impact factor: 7.500
Authors: Ángel Aledo-Serrano; Ana Mingorance; Vicente Villanueva; Juan José García-Peñas; Antonio Gil-Nagel; Susana Boronat; JoséÁngel Aibar; Silvia Cámara; María José Yániz; Luis Miguel Aras; Bárbara Blanco; Rocío Sánchez-Carpintero Journal: Front Neurol Date: 2022-09-01 Impact factor: 4.086