The Life With Amyotrophic Lateral Sclerosis: Socioeconomic Impact of the Disease on Patients and Their Caregivers in the Czech Republic
Author(s)
Matyáš Smolík, MSc.1, Katerina Chadimova, MA1, Jana Berežná, MSc.1, Eva Bezuchová, MSc.2, Tereza Blažková, MSc.1, Linh Thuy Duong, MSc.1, Aneta Syrovátková, MSc.1, Robert Chlád, MSc.1, Tomáš Doležal, PhD, MD1, Helena Dolezal, MSc.1.
1Value Outcomes an IQVIA business, Prague, Czech Republic, 2ALSA z.s., Prague, Czech Republic.
1Value Outcomes an IQVIA business, Prague, Czech Republic, 2ALSA z.s., Prague, Czech Republic.
OBJECTIVES: Amyotrophic lateral sclerosis (ALS) is a rare, progressive, neurodegenerative disease that affects motor neurons of the central nervous system, leading to muscle weakness, paralysis, and ultimately respiratory failure. Most patients survive for 3-5 years after disease onset. Our study explored its socioeconomic burden.
METHODS: A cross-section survey was conducted among patients and their caregivers to observe local socioeconomic impact of ALS. Data were collected in March 2025 in cooperation with the patient association ALSA. For patients and caregivers, we collected demographic and clinical data, healthcare resource use data, out-of-pocket and social transfer costs, WPAI, EQ-5D-5L, and Zarit Scale of Caregiver Burden. Work productivity costs were assessed using a human capital approach.
RESULTS: In total, 53 patients and 55 caregivers completed questionnaires, with a mean age of 58 years for patients and 52 years for caregivers. Mean EQ-5D-5L score was 0.104 for patients and 0.756 for caregivers.
Average total out-of-pocket costs per patient were €371/month including transport costs, medical equipment, additional payments for medicines/co-payments, over-the-counter medicines, vitamins, and other costs (e.g. physiotherapy, personal assistant). A significant proportion of patients received a disability pension due to ALS (60%), a care allowance for their caregivers (75%), and mobility allowance (36%), with total social transfer costs amounting to €999/month.
The work impairment of employed patients (n=9) was 54%, with the majority being presenteeism at 38%. For employed caregivers (n=22) work impairment was 48%, with the majority being presenteeism at 39%. Total yearly productivity loss costs were €12 488/patient and €15 477/caregiver.
CONCLUSIONS: The results of the cross-sectional survey highlight the significant socioeconomic impact of ALS on both patients and caregivers. By stratifying patients according to the MiToS staging system, we observe a clear association between advanced disease stages and higher socioeconomic burden, alongside with a decline in quality of life.
METHODS: A cross-section survey was conducted among patients and their caregivers to observe local socioeconomic impact of ALS. Data were collected in March 2025 in cooperation with the patient association ALSA. For patients and caregivers, we collected demographic and clinical data, healthcare resource use data, out-of-pocket and social transfer costs, WPAI, EQ-5D-5L, and Zarit Scale of Caregiver Burden. Work productivity costs were assessed using a human capital approach.
RESULTS: In total, 53 patients and 55 caregivers completed questionnaires, with a mean age of 58 years for patients and 52 years for caregivers. Mean EQ-5D-5L score was 0.104 for patients and 0.756 for caregivers.
Average total out-of-pocket costs per patient were €371/month including transport costs, medical equipment, additional payments for medicines/co-payments, over-the-counter medicines, vitamins, and other costs (e.g. physiotherapy, personal assistant). A significant proportion of patients received a disability pension due to ALS (60%), a care allowance for their caregivers (75%), and mobility allowance (36%), with total social transfer costs amounting to €999/month.
The work impairment of employed patients (n=9) was 54%, with the majority being presenteeism at 38%. For employed caregivers (n=22) work impairment was 48%, with the majority being presenteeism at 39%. Total yearly productivity loss costs were €12 488/patient and €15 477/caregiver.
CONCLUSIONS: The results of the cross-sectional survey highlight the significant socioeconomic impact of ALS on both patients and caregivers. By stratifying patients according to the MiToS staging system, we observe a clear association between advanced disease stages and higher socioeconomic burden, alongside with a decline in quality of life.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR235
Topic
Patient-Centered Research
Topic Subcategory
Health State Utilities, Patient Behavior and Incentives, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Neurological Disorders, Rare & Orphan Diseases