Author(s)
Ziemssen T1, Thomas FP2, Attarian S3, Sevilla T4, Gray A5, Hollett C6, Moore A6, Bertrand V7, Boutalbi Y7, Larrazet M7, Monteiro K7, Paoli X7, Llewellyn S8, Bagshaw E8, Kousoulakou H8, Larkin M8
1Zentrum für klinische Neurowissenschaften, Klinik und Poliklinik für Neurologie, Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Dresden, Germany, 2Hackensack University Medical Center, Hackensack, NJ, USA, 3Assistance Publique - Hopitaux de Marseille, Marseille, France, 4Hospital Universitari i Politècnic La Fe, Valencia, Spain, 5Charcot-Marie-Tooth Association, Glenolden, PA, USA, 6Hereditary Neuropathy Foundation, New York, NY, USA, 7Pharnext, Issy-les-Moulineaux, France, 8Vitaccess Ltd, Oxford, UK
OBJECTIVES The objective of this analysis was to examine patient-reported productivity losses for Charcot-Marie-Tooth disease (CMT) in EU and US real-world practice. METHODS Adults with CMT were recruited to a two-year international observational study exploring the real-world impact of the disease. Data were collected via CMT&Me, a ‘bring your own device’ app specifically developed for this study, through which participants were asked questions about demographic and employment variables. This interim analysis examined the impact of CMT on ability to work and study in participants from Germany, Italy, Spain, the UK and the US. RESULTS Of participants who responded, just over half (52%) reported that they were currently working for pay. Twenty-one percent of all participants reported not working due to a disabled status. A further 7% were unemployed, of whom 62% reported that CMT was a contributing factor. Of those working for pay, 77% reported that their work life was affected by CMT. The highest rates were in the UK (81%), while the lowest were in Italy and Spain (both 74%). The most frequently reported ways in which work life was affected by CMT were type of job (58%), number of days taken as sick leave (31%), and working part-time (28%). Participants reported missing a mean of 1.08 days of work in the past two weeks due to their condition. Of the 5% of participants who reported that they were studying, 74% reported that their study life was affected by CMT. The most frequently reported ways in which study life was affected were choice of school/college/university, and Other (both 52%). CONCLUSIONS CMT is associated with substantial productivity losses, which are comparable across EU countries and the US. Further research is needed to explore the specific indirect costs associated with these productivity losses, and to better manage CMT’s impact on patients’ work/study lives.
