Skip to main content Accessibility help
×
×
Home

Medical Tourism for CCSVI Procedures in People with Multiple Sclerosis: An Observational Study

  • Luanne M. Metz (a1) (a2), Jamie Greenfield (a1) (a2), Ruth Ann Marrie (a3), Nathalie Jette (a1) (a2) (a4) (a5), Gregg Blevins (a6), Lawrence W. Svenson (a4) (a7) (a8), Katayoun Alikhani (a1) (a2), Winona Wall (a1) (a2), Raveena Dhaliwal (a1) (a2) and Oksana Suchowersky (a9)...

Abstract

Background: Many Canadians with multiple sclerosis (MS) have recently travelled internationally to have procedures for a putative condition called chronic cerebrospinal venous insufficiency (CCSVI). Here, we describe where and when they went and describe the baseline characteristics of persons with MS who participated in this non–evidence-based medical tourism for CCSVI procedures. Methods: We conducted a longitudinal observational study that used online questionnaires to collect patient-reported information about the safety, experiences, and outcomes following procedures for CCSVI. A convenience sample of all Albertans with MS was recruited between July 2011 and March 2013. Results: In total, 868 individuals enrolled; 704 were included in this cross-sectional, baseline analysis. Of these, 128 (18.2%) participants retrospectively reported having procedures for CCSVI between April 2010 and September 2012. The proportion of participants reporting CCSVI procedures declined from 80 (62.5%) in 2010, to 40 (31.1%) in 2011, and 8 (6.3%) in 2012. In multivariable logistic regression analysis, CCSVI procedures were independently associated with longer disease duration, secondary progressive clinical course, and greater disability status. Conclusions: Although all types of people with MS pursued procedures for CCSVI, a major driver of participation was greater disability. This highlights that those with the greatest disability are the most vulnerable to unproven experimental procedures. Participation in CCSVI procedures waned over time possibly reflecting unmet expectations of treated patients, decreased media attention, or that individuals who wanted procedures had them soon after the CCSVI hypothesis was widely publicized.

Étude observationnelle du tourisme médical pour des interventions pour IVCSC par des individus atteints de SP. Contexte: Plusieurs Canadiens atteints de sclérose en plaques (SP) se sont rendus dans différents pays pour subir une intervention visant à traiter une prétendue insuffisance veineuse cérébrospinale chronique (IVCSC). Nous rapportons où et quand ils sont allés ainsi que les caractéristiques initiales des individus atteints de SP qui ont participé à ce tourisme médical pour y subir cette intervention non fondée sur des données probantes. Méthode: Nous avons effectué une étude observationnelle longitudinale au moyen de questionnaires en ligne pour recueillir de l’information de ces patients sur la sécurité, les expériences et les résultats suite à des interventions pour IVCSC. Un échantillon de commodité de tous les Albertains atteints de SP a été recruté entre juillet 2011 et mars 2013. Résultats: En tout, 868 individus se sont inscrits et 704 ont été inclus dans l’analyse transversale des données initiales. Parmi eux, 128 participants (18,2%) ont rapporté rétrospectivement avoir subi des interventions pour IVCSC entre avril 2010 et septembre 2012. Le nombre des participants qui ont rapporté avoir subi ces interventions a diminué de 80 (62,5%) en 2010 à 40 (31%) en 2011 et à 8 (6,3%) en2012. L’analyse de régression logistique multivariée a montré que les interventions pour IVCSC étaient associées de façon indépendante à une durée plus longue de la maladie, à une forme secondaire progressive au point de vue évolution clinique et à un niveau d’invalidité plus important. Conclusions: Bien que des individus de tous types atteints de SP aient eu recours à des interventions pour IVCSC, un niveau de handicap plus sévère constituait un facteur déterminant de cette décision. Ceci souligne le fait que ceux qui ont un plus haut degré d’invalidité sont les plus vulnérables quand il s’agit d’interventions expérimentales dont l’efficacité n’a pas été démontrée. La participation à des interventions pour IVCSC a diminué avec le temps, ce qui reflète possiblement la déception des patients n’ayant pas bénéficié des résultats escomptés, une diminution de l’exposition dans les médias ou que les individus qui voulaient subir l’intervention l’ont subi peu après que l’hypothèse de l’IVCSC ait été largement médiatisée.

  • View HTML
    • Send article to Kindle

      To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

      Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

      Find out more about the Kindle Personal Document Service.

      Medical Tourism for CCSVI Procedures in People with Multiple Sclerosis: An Observational Study
      Available formats
      ×

      Send article to Dropbox

      To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

      Medical Tourism for CCSVI Procedures in People with Multiple Sclerosis: An Observational Study
      Available formats
      ×

      Send article to Google Drive

      To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

      Medical Tourism for CCSVI Procedures in People with Multiple Sclerosis: An Observational Study
      Available formats
      ×

Copyright

Corresponding author

Correspondence to: Luanne M. Metz, Department of Clinical Neurosciences, University of Calgary, Foothills Hospital, 1403 29 Street NW, Calgary, Alberta, T2N 2T9, Canada. Email: lmetz@ucalgary.ca

References

Hide All
1. Johnston, R, Crooks, VA, Snyder, J. “I didn’t even know what I was looking for:” A qualitative study of the decision-making processes of Canadian medical tourists. Global Health. 2012;8:23.
2. Crooks, VA, Turner, L, Cohen, G, et al. Ethical and legal implications of the risks of medical tourism for patients: a qualitative study of Canadian health and safety representatives’ perspectives. BMJ Open. 2013;3:e002302.
3. Cameron, K, Crooks, VA, Chouinard, V, Snyder, J, Johnston, R, Casey, V. Motivation, justification, normalization: talk strategies used by Canadian medical tourists regarding their choices to go abroad for hip and knee surgeries. Soc Sci Med. 2014;106:93-100.
4. Baracchini, C, Valdueza, JM, Del Sette, M, et al. CCSVI and MS: a statement from the European Society of neurosonology and cerebral hemodynamics. J Neurol. 2012;259:2585-2589.
5. Chafe, R, Born, KB, Slutsky, AS, Laupacis, A. The rise of people power. Nature. 2011;472:410-411.
6. Holm, C, Snyder, J. “It was the best decision of my life:” a thematic content analysis of former medical tourists’ patient testimonials. BMC Med Ethics. 2015;16:8.
7. Burton, JM, Alikhani, K, Goyal, M, et al. Complications in MS patients after CCSVI procedures abroad (Calgary, AB). Can J Neurol Sci. 2011;38:741-746.
8. Zamboni, P, Galeotti, R, Menegatti, E, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. J Neurol Neurosurg Psychiatry. 2009;80:392-399.
9. Zamboni, P, Galeotti, R, Menegatti, E, et al. A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. J Vasc Surg. 2009;50:1348-1358.
10. Benarroch, EE. Brain iron homeostasis and neurodegenerative disease. Neurology. 2009;72:1436-1440.
11. Zecca, L, Youdim, MB, Riederer, P, Connor, JR, Crichton, RR. Iron, brain ageing and neurodegenerative disorders. Nat Rev Neurosci. 2004;5:863-873.
12. Masuhr, F, Einhäupl, K. Treatment of cerebral venous and sinus thrombosis. In: Caso V, Agnelli G, Paciaroni M eds. Handbook on Cerebral Venous Thrombosis. Front Neurol Neurosci. Vol 23. Basel, Switzerland: Karger; 200:132-143.
13. Friedman, DI, Jacobson, DM. Idiopathic intracranial hypertension. J Neuroophthalmol. 2004;24:138-145.
14. Doepp, F, Bähr, D, John, M, Hoernig, S, Valdueza, JM, Schreiber, SJ. Internal jugular vein valve incompetence in COPD and primary pulmonary hypertension. J Clin Ultrasound. 2008;36:480-484.
15. Reekers, JA, Lee, MJ, Belli, AM, Barkhof, F. Cardiovascular and Interventional Radiological Society of Europe commentary on the treatment of chronic cerebrospinal venous insufficiency. Cardiovasc Intervent Radiol. 2011;34:1-2.
16. Crile, G. Excision of cancer of the head and neck. With special reference to the plan of dissection based on one hundred and thirty-two operations. JAMA. 1906;47:1780-1786.
17. Doepp, F, Paul, F, Valdueza, JM, Schmierer, K, Schreiber, SJ. No cerebrocervical venous congestion in patients with multiple sclerosis. Ann Neurol. 2010;68:173-183.
18. Sundström, P, Wåhlin, A, Ambarki, K, Birgander, R, Eklund, A, Malm, J. Venous and cerebrospinal fluid flow in multiple sclerosis: a case-control study. Ann Neurol. 2010;68:255-259.
19. Auriel, E, Karni, A, Bornstein, NM, Nissel, T, Gadoth, A, Hallevi, H. Extra-cranial venous flow in patients with multiple sclerosis. J Neurol Sci. 2011;309:102-104.
20. Khan, O, Filippi, M, Freedman, MS, et al. Chronic cerebrospinal venous insufficiency and multiple sclerosis. Ann Neurol. 2010;67:286-290.
21. Wattjes, MP, van Oosten, BW, de Graaf, WL, et al. No association of abnormal cranial venous drainage with multiple sclerosis: a magnetic resonance venography and flow-quantification study. J Neurol Neurosurg Psychiatry. 2011;82:429-435.
22. Baracchini, C, Perini, P, Causin, F, Calabrese, M, Rinaldi, F, Gallo, P. Progressive multiple sclerosis is not associated with chronic cerebrospinal venous insufficiency. Neurology. 2011;77:844-850.
23. Tsivgoulis, G, Sergentanis, TN, Chan, A, et al. Chronic cerebrospinal venous insufficiency and multiple sclerosis: a comprehensive meta-analysis of case-control studies. Ther Adv Neurol Disord. 2014;7:114-136.
24. Laupacis, A, Lillie, E, Dueck, A, et al. Association between chronic cerebrospinal venous insufficiency and multiple sclerosis: a meta-analysis. CMAJ. 2011;183:E1203-E1212.
25. Hopkins, L, Labonté, R, Runnels, V, Packer, C. Medical tourism today: what is the state of existing knowledge? J Public Health Policy. 2010;31:185-198.
26. Snyder, J, Crooks, VA, Johnston, R, Kingsbury, P. What do we know about Canadian involvement in medical tourism?: a scoping review. Open Med. 2011;5:139-148.
27. Turner, L. News media reports of patient deaths following ‘medical tourism’ for cosmetic surgery and bariatric surgery. Deve World Bioeth. 2012;12:21-34.
28. Government of Alberta [Internet]. Alberta launches multiple sclerosis observational study. [updated 2011 Jul 27; cited 2014 Jun 4]. Available from: http://www.albertahealthservices.ca/5356.asp.
29. MS Society of Canada [Internet]. MS Update on: [updated 2011 Jul; cited 2014 Jun 4]. Available from: http://mssociety.ca/chapters/calgary/pdf/MSUpdate_July11.pdf.
30. Hohol, MJ, Orav, EJ, Weiner, HL. Disease steps in multiple sclerosis: a simple approach to evaluate disease progression. Neurology. 1995;45:251-255.
31. Marrie, RA, Goldman, M. Validity of performance scales for disability assessment in multiple sclerosis. Mult Scler. 2007;13:1176-1182.
32. Fisk, JD, Ritvo, PG, Ross, L, Haase, DA, Marrie, TJ, Schlech, WF. Measuring the functional impact of fatigue: initial validation of the fatigue impact scale. Clin Infect Dis. 1994;18(Suppl 1):S79-S83.
33. Weissman, MM, Sholomskas, D, Pottenger, M, Prusoff, BA, Locke, BZ. Assessing depressive symptoms in five psychiatric populations: a validation study. Am J Epidemiol. 1977;106:203-214.
34. Vickrey, BG, Hays, RD, Harooni, R, Myers, LW, Ellison, GW. A health-related quality of life measure for multiple sclerosis. Qual Life Res. 1995;4:187-206.
35. Feeny, D, Furlong, W, Boyle, M, Torrance, GW. Multi-attribute health status classification systems. Health Utilities Index. Pharmacoeconomics. 1995;7:490-502.
36. Marrie, RA, Hadjimichael, O, Vollmer, T. Predictors of alternative medicine use by multiple sclerosis patients. Mult Scler. 2003;9:461-466.
37. Shinto, L, Yadav, V, Morris, C, Lapidus, JA, Senders, A, Bourdette, D. Demographic and health-related factors associated with complementary and alternative medicine (CAM) use in multiple sclerosis. Mult Scler. 2006;12:94-100.
38. Siddiqui, AH, Zivadinov, R, Benedict, RH, et al. Prospective randomized trial of venous angioplasty in MS (PREMiSe). Neurology. 2014;83:441-449.
39. Marrie, AR, Salter, RA, Tyry, T, Fox, JR, Cutter, RG. Preferred sources of health information in persons with multiple sclerosis: degree of trust and information sought. J Med Internet Res. 2013;15:e67.
40. Smith, AB, King, M, Butow, P, Olver, I. A comparison of data quality and practicality of online versus postal questionnaires in a sample of testicular cancer survivors. Psychooncology. 2013;22:233-237.
41. Learmonth, YC, Motl, RW, Sandroff, BM, Pula, JH, Cadavid, D. Validation of patient determined disease steps (PDDS) scale scores in persons with multiple sclerosis. BMC Neurol. 2013;13:37.
42. Ingram, G, Colley, E, Ben-Shlomo, Y, et al. Validity of patient-derived disability and clinical data in multiple sclerosis. Mult Scler. 2010;16:472-479.
43. Mustard, CA, Derksen, S, Berthelot, J-M, Wolfson, M. Assessing ecologic proxies for household income: a comparison of household and neighbourhood level income measures in the study of population health status. Health & Place. 1999;5:157-171.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Canadian Journal of Neurological Sciences
  • ISSN: 0317-1671
  • EISSN: 2057-0155
  • URL: /core/journals/canadian-journal-of-neurological-sciences
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Keywords

Type Description Title
WORD
Supplementary materials

Metz supplementary material S1
Supplementary Tables

 Word (48 KB)
48 KB
WORD
Supplementary materials

Metz supplementary material S2
Supplementary Tables

 Word (53 KB)
53 KB
WORD
Supplementary materials

Metz supplementary material S3
Supplementary Tables

 Word (54 KB)
54 KB
WORD
Supplementary materials

Metz supplementary material S4
Supplementary Tables

 Word (63 KB)
63 KB

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed