title: Patient-Reported Benefits of Extracranial Venous Therapy: British Columbia CCSVI Registry.
abstract: Objective Chronic cerebrospinal venous insufficiency (CCSVI) has been hypothesized to be a risk factor for multiple sclerosis (MS). Venoplasty has been proposed as a treatment for CCSVI. The aim of our study was to gain a better understanding of the "real-world" safety and longitudinal effectiveness of venoplasty Methods: British Columbia residents who self-reported having had venoplasty and consented to participate in the study were interviewed and followed for up to 24 months post-therapy using standardized structured questionnaires Results: Participants reported procedure-related complications (11.5%) and complications within the first month after the procedure (17.3%). Initially, more than 40% of participants perceived that the venoplasty had had positive effects on their health conditions, such as fatigue, numbness, balance, concentration/memory and mobility. However, this improvement was not maintained over time Conclusions: Follow-up patient-reported outcomes indicated that the initial perception of the positive impact of venoplasty on the health conditions of MS patients was not sustained over time. In addition, venoplasty was not without associated morbidity.
authors.affiliation: 1Department of Medical Genetics,University of British Columbia,Vancouver,British Columbia,Canada.
authors.forename: A Dessa
authors.initials: AD
authors.lastname: Sadovnick
authors.affiliation: 1Department of Medical Genetics,University of British Columbia,Vancouver,British Columbia,Canada.
authors.forename: Irene M
authors.initials: IM
authors.lastname: Yee
authors.affiliation: 2Vancouver Island Health Authority,Victoria,British Columbia,Canada.
authors.forename: Kristen
authors.initials: K
authors.lastname: Attwell-Pope
authors.affiliation: 3Wellington Medical Clinic,Nanaimo,British Columbia,Canada.
authors.forename: Glenn
authors.initials: G
authors.lastname: Keyes
authors.affiliation: 4Department of Medicine (Neurology),University of British Columbia,Vancouver,British Columbia,Canada.
authors.forename: Lucas
authors.initials: L
authors.lastname: Kipp
authors.affiliation: 4Department of Medicine (Neurology),University of British Columbia,Vancouver,British Columbia,Canada.
authors.forename: Anthony L
authors.initials: AL
authors.lastname: Traboulsee
mesh_terms: D000368:Aged; D000714:Anastomosis, Surgical / Q000379:methods; D017130:Angioplasty / Q000379:methods; D001955:British Columbia / Q000453:epidemiology; D002908:Chronic Disease; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D020529:Multiple Sclerosis, Relapsing-Remitting / Q000175:diagnosis / Q000453:epidemiology / Q000601:surgery; D017060:Patient Satisfaction; D012042:Registries; D057566:Self Report; D016896:Treatment Outcome; D014689:Venous Insufficiency / Q000175:diagnosis / Q000453:epidemiology* / Q000601:surgery*
keywords: CCSVI; Multiple sclerosis; adverse events; chronic cerebral spinal venous insufficiency; longitudinal study; patient-reported outcomes; venoplasty