“I knew what was going to happen if I did nothing and so I was going to do something”: Faith, hope, and trust in the decisions of Canadians with multiple sclerosis to seek unproven interventions abroad

BMC Health Services Research

Jennifer Vallee²  David Whitehurst²  Valorie A Crooks¹  Krystyna Adams²  Jeremy Snyder² 

[1] Department of Geography, Simon Fraser University, 8888 University Dr, Burnaby, BC, Canada;Faculty of Health Sciences, Simon Fraser University, 8888 University Dr, Burnaby, BC, Canada

关键词: Canada;    CCSVI;    Multiple sclerosis;    Medical tourism;   

Others  :  1126076
DOI  :  10.1186/1472-6963-14-445

 received in 2014-02-07, accepted in 2014-09-23,  发布年份 2014

【 摘 要 】

Background

Chronic cerebrospinal venous insufficiency (CCSVI) treatment is an unproven intervention aimed at relieving some of the symptoms of multiple sclerosis (MS). Despite limited evidence of the efficacy and safety of this intervention, Canadians diagnosed with MS have been traveling abroad to access this procedure as it is not available domestically outside of limited clinical trials. This paper discusses the experiences of Canadians with MS seeking CCSVI treatment abroad.

Methods

This paper presents a secondary analysis of 15 interviews with participants who had gone abroad for CCSVI treatment. Interviews were conducted over the phone between October 2012 and December 2012. All interviews were digitally recorded and transcribed verbatim. Transcripts were hand coded for: 1) why CCSVI treatment was sought and where it was obtained; 2) the role of having hope for a cure in seeking CCSVI; 3) the impact of MS on everyday life; and 4) the role other people played in the decision to go abroad.

Results

The authors identified loss of faith, hope, and trust as themes emerging from the transcripts. The participants experienced a loss of faith with the Canadian health system and especially the neurologists who were responsible for their care and the classification of MS as a neurological disease. Access to CCSVI treatment abroad generated hope in these participants, but they were cautious in their expectations, focusing on symptom management rather than a cure. Trust in their caregivers abroad was generated through the recommendations of other MS sufferers and the credentials of their caregivers abroad.

Conclusions

By deciding to seek an unproven intervention abroad, these individuals took on responsibility for their care from the Canadian health system. While evidence of the efficacy of CCSVI treatment is limited, the participants felt that they were making a rational care decision, focusing on the empowerment and renewed hope generated by seeking this intervention. Health professionals and policy makers globally should consider the causes of loss of faith in their domestic care systems and balance the benefits of empowerment and renewed hope against concerns that unproven interventions may create new health risks.

【 授权许可】

   
2014 Snyder et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Snyder J, Crooks VA, Johnston R, Kingsbury P: What do we know about Canadian involvement in medical tourism? A scoping review. Open Med 2011, 5:3.
• [2]Crooks VA, Kingsbury P, Snyder J, Johnston R: What is known about the patient’s experience of medical tourism? A scoping review. BMC Health Serv Res 2010, 10:266. BioMed Central Full Text
• [3]Pullman D, Zarzeczny A, Picard A: Media, politics and science policy: MS and evidence from the CCSVI Trenches. BMC Med Ethics 2013, 14:6. BioMed Central Full Text
• [4]Birnbaum G: Multiple Sclerosis. Cary, NC, USA: Oxford University Press; 2009.
• [5]Zamboni P, Galeotti R, Menegatti E, Malagoni AM, Tacconi G, Dall’Ara S, Bartolomei I, Salvi F: Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. J Neurol Neurosurg Psychiatry 2009, 80:392-399.
• [6]Laupacis A, Lillie E, Dueck A, Straus S, Perrier L, Burton JM, Aviv R, Thorpe K, Feasby T, Spears J: Association between chronic cerebrospinal venous insufficiency and multiple sclerosis: a meta-analysis. CMAJ 2011, 183:16.
• [7]Zivadinov R, Marr K, Cutter J, Ramanathan M, Benedict RHB, Kennedy C, Elfadil M, Yeh AE, Reuther J, Brooks C, Hunt K, Andrews M, Carl E, Dwyer MG, Hojnacki D, Weinstock-Guttman B: Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS. Neurology 2011, 77:138-144.
• [8]van Zuuren EJ, Fedorowicz Z, Pucci E, Jagannath VA, Robak EW: Percutaneous transluminal angioplasty for treatment of chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis patients. Cochrane Database Syst Rev 2012, 12:CD009903.
• [9]Rodger I, Dilar D, Dwyer J, Bienenstock J, Coret A, Coret-Simon J, Foster G, Franchetto A, Franic S, Goldsmith CH, Koff D, Konyer NB, Levine M, McDonald E, Noseworthy MD, Paulseth J, Ribeiro L, Sayles MJ, Thabane L: Evidence Against the Involvment of Chronic Cerebrospinal Venous Abnormalities in MS. A Case–control Study. PLoS One 2013, 8:8.
• [10]Goldbaum E: MS patients did not benefit from CCSVI intervention, landmark pilot study of ‘liberation treatment’ finds. http://www.buffalo.edu/news/releases/2013/03/021.html webcite
• [11]Leone MA, Raymkulova O, Naldi P, Lochner P, Bolamperti L, Coppo L, Stecco A, Liboni W: Chronic Cerebrospinal Venous Insuddiciency is not Associated with MS and its Severity: a blind-verified study. PLoS One 2013, 8:2.
• [12]National MS Society: The First Published Results from the National MS-Society Funded CCSVI Study. http://www.nationalmssociety.org/About-the-Society/News/First-Published-Results-from-National-MS-Society-F webcite
• [13]National MS Society: Additional Published Results from the National MS-Society Funded CCSVI Study. http://www.nationalmssociety.org/About-the-Society/News/Additional-Published-Results-from-National-MS-Soci webcite
• [14]Traboulsee AL, Knox KB, Machan L, Zhao Y, Yee I, Rauscher A, Klass D, Szkup P, Otani R, Kopriva D, Lala S, Li DK, Sadovnick D: Prevalence of extracranial venous narrowing on catheter venography in people with multiple sclerosis, their siblings, and unrelated healthy controls: a blinded, case–control study. The Lancet 2014, 383(9912):138-145.
• [15]Multiple Sclerosis International Federation: Atlas of MS database. http://www.atlasofms.org/ webcite
• [16]Multiple Sclerosis Society of Canada: About us. http://mssociety.ca/en/information/default.htm webcite
• [17]CIHI: MS. [http://www.cihi.ca/CIHI-ext-portal/internet/EN/TabbedContent/types+of+care/specialized+services/multiple+sclerosis/cihi018060 webcite]
• [18]Kingston A: The Silent Treatment: How Canada has Failed MS Sufferers. Internal documents show why Canada has not kept its promise to accelerate contentious clinical trials for MS. http://www2.macleans.ca/2012/06/25/the-silent-treatment-how-canada-has-failed-ms-sufferers/ webcite
• [19]Health Canada: Canada’s Health Care System (Medicare). http://www.hc-sc.gc.ca/hcs-sss/medi-assur/index-eng.php webcite
• [20]Fitzpatrick M: MS treatment clinical trials a step closer. http://www.cbc.ca/news/politics/ms-treatment-clinical-trials-a-step-closer-1.1106539 webcite
• [21]Kingston A: MS patients eager for a breakthrough surgery are facing more resistance than they expected. http://www2.macleans.ca/2010/05/31/not-available-in-canada/ webcite
• [22]Kirkey S: U.S. specialists in competition for Canadian MS patients. http://www.canada.com/health/specialists+competition+Canadian+patients/4246308/story.html webcite
• [23]CBC News: Multiple sclerosis vein opening: a timeline. http://www.cbc.ca/news/health/multiple-sclerosis-vein-opening-a-timeline-1.884555 webcite
• [24]Blackwell T: Advocates stand by controversial MS treatment while new Canadian study sounds its “death knell”. http://news.nationalpost.com/2013/10/08/advocates-stand-by-controversial-ms-treatment-while-new-canadian-study-sounds-its-death-knell/ webcite
• [25]Burton JM, Alikhani K, Goyal M, Costello F, White C, Patry D, Bell R, Hill MD: Complications in MS patients after CCSVI procedures abroad (Calgary, AB). Can J Neurol Sci 2011, 38:741-746.
• [26]CBC News: 2nd Canadian dies after MS surgery. http://www.cbc.ca/news/health/2nd-canadian-dies-after-ms-surgery-1.1031686 webcite
• [27]Corcoran T: The miracle media cure for MS that wasn’t. http://opinion.financialpost.com/2013/10/09/terence-corcoran-the-miracle-media-cure-for-ms-that-wasnt/ webcite
• [28]Adams K, Snyder J, Crooks VA, Johnston R: Promoting social responsibility amongst health care users: medical tourists’ perspectives on an information sheet regarding ethical concerns in medical tourism. Philos Ethics Humanit Med 2013, 8:19. BioMed Central Full Text
• [29]Denzin N, Lincoln Y: The sage handbook of qualitative research. 3rd edition. CA: Sage Publications Ltd; 2005.
• [30]Sturges JE, Hanrahan KJ: Comparing telephone and face-to-face qualitative interviewing: a research note. Qual Res 2004, 41:107-118.
• [31]Crooks VA, Cameron K, Chouinard V, Johnston R, Snyder J, Casey V: Use of medical tourism for hip and knee surgery in osteoarthritis: A qualitative examination of distinctive attitudinal characteristics among Canadian patients. BMC Health Serv Res 2012, 12:417. BioMed Central Full Text
• [32]Leung KK, Silvius JL, Pimlott N, Dalziel W, Drummond N: Why health expectations and hopes are different: the development of a conceptual model. Health Expect 2009, 12:347-360.
• [33]Lejbkowicz I, Paperna T, Stein N, Dishon S, Miller A: Internet usage by patients with multiple sclerosis: Implications to participatory medicine and personalized healthcare. Mult Scler Int 2010., 640749
• [34]Büssing A, Ostermann T, Neugebauer EAM, Heusser P: Adaptive coping strategies in patients with chronic pain conditions and their interpretation of disease. BMC Public Health 2010, 10:507. BioMed Central Full Text
• [35]Dennison L, Yardley L, Devereux A, Moss-Morris R: Experiences of adjusting to early stage Multiple Sclerosis. J Health Psychol 2011, 16:478-488.
• [36]Snyder J, Crooks VA, Johnston R: Perceptions of the ethics of medical tourism by Canadian patients: comparing patient and academic perspectives. Public Health Ethics 2012, 5(1):38-46.
• [37]Cunningham MM, Jillings C: Individuals’ descriptions of living with fibromyalgia. Clin Nurs Res 2006, 15(4):258-273.
• [38]Raymond MC, Brown JB: Experience of fibromyalgia. Qualitative study. Can Fam Physician 2000, 46:1100-1106.
• [39]Ormond M: Neoliberal governance and international medical travel in Malaysia. USA: Routledge; 2013.
• [40]Picard A: MS is a bedevilling disease with no simple answers. http://www.theglobeandmail.com/news/national/ms-is-a-bedevilling-disease-with-no-simple-answers/article1461909/ webcite
• [41]CBC News: Sask. MS patient dies seeking follow up care not provided at home, advocate says. http://www.cbc.ca/news/canada/saskatchewan/sask-ms-patient-dies-seeking-follow-up-care-not-provided-at-home-advocate-says-1.1143354?cmp=rss webcite
• [42]Murdoch CE, Scott CT: Stem cell tourism and the power of hope. Am J Bioeth 2010, 10(5):16-23.
• [43]Petersen A, Seear K, Munsie M: Therapeutic journeys: hopeful travails of stem cell tourists. Sociol Health Illn 2013, 36(5):1-16.
• [44]Shalev C: Stem-cell tourism: a challenge for trans-national governance. Am J Bioeth 2010, 10(5):40-42.
• [45]Zarzeczny A, Rachul C, Caulfield T: Stem cell tourism. In Progenitor and Stem Cell Technologies and Therapies. Edited by Atala A. Cambridge, UK: Woodhead Publishing Limited; 2012:206-234.
• [46]Cohen CB, Cohen PJ: International stem cell tourism and the need for effective regulation: Part I: Stem cell tourism in Russia and India: Clinical research, innovative treatment, or unproven hype? Kennedy Inst Ethics J 2010, 20(1):27-49.
• [47]Ryan KA, Sanders AN, Wang DD, Levine AD: Tracking the rise of stem cell tourism. Regen Med 2010, 5(1):27-33.