Skip to main content Accessibility help
×
Home

Truths and Misinformation: A Qualitative Exploration of Myotonic Dystrophy

  • Kori A. LaDonna (a1), Amer A. Ghavanini (a2) and Shannon L. Venance (a3)

Abstract

Background: Myotonic dystrophy (DM1) is an autosomal dominant, progressive, and multisystem condition that impacts affected individuals physically, socially, and emotionally. Understanding individuals’ perceptions of their disease is critical to ensuring appropriate information, education, and counseling. Methods: We conducted a content analysis of findings from a larger study that used a novel, qualitative research approach called photovoice to explore nine patients’ experiences of living with DM1. Participants took pictures that illustrated barriers or facilitators to living with DM1; their photographs then formed the basis of semistructured interviews. Transcripts were analyzed and, among themes, we identified one titled “DM1 truths and misinformation” that described participants’ disease knowledge. Analysis revealed four categories within this broader theme: “the physical and emotional cost of DM1,” “managing my DM1,” “genetics and me” and “patients as advocates and educators.” Results: Findings showed that DM1 participants had good core knowledge with respect to their disease and its implications. However, each participant held as fact fragments of misinformation that shaped decision-making and pointed to a clear need for strategies to mitigate variable interpretation of health information. Conclusions: We conclude that there is a need for increased education and awareness about symptoms, genetic information and treatment strategies for patients, their family members, and health care providers.

Vérités et mésinformation : une exploration qualitative de la dystrophie myotonique. Contexte: La dystrophie myotonique (DM1) est une maladie plurisystémique progressive, à hérédité dominante, qui a un impact physique, social et émotionnel chez les individus qui en sont atteints. Il est très important de comprendre les perceptions qu’ont de la maladie les individus qui en sont atteints afin de leur fournir de l’information ainsi qu’un enseignement et des conseils appropriés. Méthode: Nous avons procédé à une analyse de contenu des observations d’une grande étude au moyen d’une approche de recherche qualitative novatrice, la méthodologie « Photovoice », pour explorer les expériences de 9 patients qui vivent avec la DM1. Les participants ont pris des photos qui illustraient les barrières ou les commodités qui leur facilitaient la vie avec la DM1; ces photographies ont ensuite servi de base à des entrevues semi-structurées. La retranscription de ces entrevues a été analysée et, parmi les thèmes abordés, nous en avons identifié un, « vérités et mésinformation sur la DM1 », qui décrivait les connaissances qu’ont les participants de la maladie. L’analyse a révélé quatre catégories à l’intérieur de ce thème plus vaste : « le coût physique et émotionnel de la DM1 », « gérer ma DM1 », « la génétique et moi » et « les patients comme défenseurs et éducateurs ». Résultats: Nous avons constaté que les participants atteints de DM1 avaient de bonnes connaissances de base concernant leur maladie et ses implications. Cependant, chaque participant ajoutait foi à des bribes de mésinformation qui affectaient leur processus décisionnel et mettait en évidence la nécessité d’établir des stratégies pour mitiger une interprétation variable de l’information sur la santé. Conclusions: Nous concluons qu’il existe un besoin d’informer et de sensibiliser davantage les patients, les membres de leur famille et les professionnels de la santé concernant les symptômes, l’information génétique et les stratégies de traitement de la DM1.

  • 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.

      Truths and Misinformation: A Qualitative Exploration of Myotonic Dystrophy
      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.

      Truths and Misinformation: A Qualitative Exploration of Myotonic Dystrophy
      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.

      Truths and Misinformation: A Qualitative Exploration of Myotonic Dystrophy
      Available formats
      ×

Copyright

Corresponding author

Correspondence to: Shannon L. Venance, Department of Clinical Neurological Sciences, Western University, 339 Windermere Rd, University Hospital, LHSC, London, ON, Canada N6A 5A5. Email: shannon.venance@lhsc.on.ca

References

Hide All
1. Udd, B, Krahe, R. The myotonic dystrophies: molecular, clinical, and therapeutic challenges. Lancet Neurol. 2012;11:891-905.
2. Arsenault, ME, Prévost, C, Lescault, A, Laberge, C, Puymirat, J, Mathieu, J. Clinical characteristics of myotonic dystrophy type 1 patients with small CTG expansions. Neurology. 2006;66:1248-1250.
3. Antonini, G, Soscia, F, Giubilei, F, et al. Health-related quality of life in myotonic dystrophy type 1 and its relationship with cognitive and emotional functioning. J Rehabil Med. 2006;38:181-185.
4. Laberge, L, Mathieu, J, Auclair, J, Gagnon, E, Noreau, L, Gagnon C., Clinical, psychosocial, and central correlates of quality of life in myotonic dystrophy type 1 patients. European Neurology. 2013;70:308-315.
5. Peric, S, Rakocevic-Stojanovic, V, Stevic, Z, et al. Health-related quality of life in patients with myotonic dystrophy type 1 and amyotrophic lateral sclerosis. Acta Neurol Belg. 2010;110:71-77.
6. Boström, K, Nätterlund, BS, Ahlström, G. Sickness impact in people with muscular dystrophy: a longitudinal study over 10 years. Clin Rehabil. 2005;19:686-694.
7. Delaporte, C. Personality patterns in patients with myotonic dystrophy. Arch Neurol. 1998;55:635-640.
8. Meola, G, Sansone, V, Perani, D, et al. Executive dysfunction and avoidant personality trait in myotonic dystrophy type 1 (DM-1) and in proximal myotonic myopathy (PROMM/DM-2). Neuromusc Disord. 2003;13:813-821.
9. Sistiaga, A, Urreta, I, Jodar, M, et al. Cognitive/personality pattern and triplet expansion size in adult myotonic dystrophy type 1 (DM1): CTG repeats, cognition and personality in DM1. Psychol Med. 2010;40:487-495.
10. Laberge, L, Veillette, S, Mathieu, J, Auclair, J, Perron, M. The correlation of CTG repeat length with material and social deprivation in myotonic dystrophy. Clin Genet. 2007;71:59-66.
11. Gagnon, C, Mathieu, J, Noreau, L. Life habits in myotonic dystrophy type 1. J Rehabil Med. 2007;39:560-566.
12. Gagnon, C, Noreau, L, Moxley, RT, et al. Towards an integrative approach to the management of myotonic dystrophy type 1. J Neurol Neurosurg Psychiatry. 2007;78:800-806.
13. Heatwole, C, Bode, R, Johnson, N, et al. Patient-reported impact of symptoms in myotonic dystrophy type 1 (PRISM-1). Neurology. 2012;79:348-357.
14. Medicine Io. Health literacy: a prescription to end confusion. Washington, DC: National Academies Press; 2004.
15. Censori, B, Danni, M, Del Pesce, M, Provinciali, L. Neuropsychological profile in myotonic dystrophy. J Neurol. 1990;237:251-256.
16. Faulkner, CL, Kingston, HM. Knowledge, views, and experience of 25 women with myotonic dystrophy. J Med Genet. 1998;35:1020-1025.
17. Laberge, L, Prévost, C, Perron, M, et al. Clinical and genetic knowledge and attitudes of patients with myotonic dystrophy type 1. Public Health Genom. 2010;13:424-430.
18. Schloman, B. Health literacy: a key ingredient for managing personal health. Online J Issues Nurs. 2004;9:7.
19. Peterson, PN, Shetterly, SM, Clarke, CL, et al. Health literacy and outcomes among patients with heart failure. JAMA. 2011;305:1695-1701.
20. Williams, MV, Davis, T, Parker, RM, Weiss, BD. The role of health literacy in patient-physician communication. Family Med. 2002;34:383-389.
21. Meola, G, Sansone, V. Cerebral involvement in myotonic dystrophies. Muscle Nerve. 2007;36:294-306.
22. Charles, C, Gafni, A, Whelan, T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Social Sci Med. 1997;44:681-692.
23. Barry, MJ, Edgman-Levitan, S. Shared decision making: pinnacle of patient centered care. New Engl J Med. 2012;366:780-781.
24. Institute of Medicine. 2014 [cited 2014 October 26]; Available from: http://iom.edu/Reports/2001/Crossing-the-Quality-Chasm-A-New-Health-System-for-the-21st-Century.aspx
25. Bostrom, K, Ahlstrom, G. Quality of life in patients with muscular dystrophy and their next of kin. Int J Rehabil Res. 2005;28:103-109.
26. Bostrom, K, Ahlstrom, G, Sunvisson, H. Being the next of kin of an adult person with muscular dystrophy. Clin Nurs Res. 2006;15:86-104.
27. Cup, EHC, Kinebanian, A, Satink, T, et al. Living with myotonic dystrophy; what can be learned from couples? A qualitative study. BMC Neurol. 2011;11:86-98.
28. Boström, K, Ahlström, G. Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years. Disabil Rehabil. 2004;26:1388-1398.
29. Geirdal, AO, Lund-Petersen, I, Heiberg, A. Understanding the experience of myotonic dystrophy. Mixed method study. J Genet Couns. 2015;24:169-178.
30. LaDonna, KA, Venance, SL. Picturing the experience of living with myotonic dystrophy (DM1): a qualitative exploration using photovice. Manuscript submitted; 2014.
31. Wang, C, Burris, MA. Empowerment through photo novella: portraits of participation. Health Educ Behav. 1994;21:171-186.
32. Wang, C, Burris, MA. Photovoice: concept, methodology, and use for participatory needs assessment. Health Educ Behav. 1997;24:369-387.
33. Levin, T, Scott, BM, Borders, B, Hart, K, Lee, J, Decanini, A. Aphasia talks: photography as a means of communication, self-expression, and empowerment in persons with aphasia. Topics Stroke Rehabil. 2007;14:72-84.
34. Lorenz, LS, Kolb, B. Involving the public through participatory visual research methods. Health Expectations. 2009;12:262-274.
35. Aubeeluck, A, Buchanan, H. Capturing the Huntington’s disease spousal carer experience: a preliminary investigation using the ‘Photovoice’ method. Dementia. 2006;5:95-116.
36. Wiersma, EC. Using Photovoice with people with early-stage Alzheimer’s disease: a discussion of methodology. Dementia. 2011;10:203-216.
37. Guerra, SR, Rodrigues, SP, Demain, S. Evaluating profamilies-dementia: adopting photovoice to capture clinical significance. Dementia. 2013;12:569-587.
38. Wang, CC, Redwood-Jones, Y. Photovoice ethics: perspectives from Flint photo voice. Health Educ Behav. 2001;28:560-572.
39. Lincoln, YS, Guba, EG. Naturalistic inquiry. Newbury Park, CA: Sage; 1985.
40. Miles, MB, Huberman, AM, Saldana, J. Qualitative data analysis: a methods source book, 3rd ed. Thousand Oaks, CA: Sage; 2014.
41. Abresch, RT, Seyden, NK, Wineinger, MA. Quality of life: issues for persons with neuromuscular diseases. Phys Med Rehabil Clin N Am. 1998;9.
42. McKibbin, M, Ahmed, M, Allsop, MJ, et al. Current understanding of genetics and genetic testing and information needs and preferences of adults with inherited retinal disease. Eur J Hum Genet. 2014:1-5.
43. Saukko, PM, Ellard, S, Richards, SH, Shepherd, MH, Campbell, JL. Patients’ understanding of genetic susceptibility testing in mainstream medicine: qualitative study on thrombophilia. BMC Health Serv Res. 2007;7:82.
44. Gagnon, C, Chouinard, MC, Lavoie, M, Champagne, F. [Analysis of the nursing role in the care of patients with neuromuscular disorders]. Can J Neurosci Nurs. 2010;32:22-29.
45. Gagnon, C, Chouinard, MC, Laberge, L, et al. Health supervision and anticipatory guidance in adult myotonic dystrophy type 1. Neuromuscul Disord. 2010;20:847-851.
46. Furr, LA, Kelly, SE. The genetic knowledge index: developing a standard measure of genetic knowledge. Genet Testing. 1999;3:193-199.

Keywords

Related content

Powered by UNSILO

Truths and Misinformation: A Qualitative Exploration of Myotonic Dystrophy

  • Kori A. LaDonna (a1), Amer A. Ghavanini (a2) and Shannon L. Venance (a3)

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.