Skip to main content

Advertisement

SpringerLink
Log in

Understanding medication safety and Charcot-Marie-Tooth disease: a patient perspective

  • Research Article
  • Published:
International Journal of Clinical Pharmacy Aims and scope Submit manuscript

Abstract

Background Charcot-Marie-Tooth disease is a common inherited neuropathy where patients may be sensitive to adverse effects of certain medicines; however, information about medication safety in this group of people is limited. Objective This study aimed to investigate the experience of Australian individuals with Charcot-Marie-Tooth disease in using medications, including perceived impact of drug-induced adverse effects. Secondarily, it aimed to determine whether individuals with Charcot-Marie-Tooth disease feel adequately supported to make decisions about medication safety. Setting Focus groups and interviews (face-to-face or telephone) of individuals with Charcot-Marie-Tooth disease in Australia. Method A mixed methods qualitative study was conducted between September 2015 and August 2016 using semi-structured interviews. Thematic analysis of interview transcripts was conducted independently by two researchers using inductive coding until concept saturation was achieved. Main outcome measure Perceptions of medicines safety in people with Charcot-Marie-Tooth disease, including barriers to making informed decisions about medication safety. Results Twenty-four adults with Charcot-Marie-Tooth disease participated. Anaesthetics (18%) and pregabalin (15%) were the medications most frequently reported as impacting on Charcot-Marie-Tooth symptoms. Participants sought medication information primarily from general practitioners or neurologists. The main barriers identified by participants were a perceived poor understanding in non-specialist health professionals about Charcot-Marie-Tooth disease and lack of attention to medication safety concerns in people with Charcot-Marie-Tooth disease; this resulted in dissatisfaction about the advice provided. Many individuals who faced uncertainty in obtaining and understanding medicines information turned to internet resources, peer groups, and use of complementary and alternative medicines to self-manage Charcot-Marie-Tooth exacerbations. Conclusion Participants reported drug-related adverse effects and a difficulty in obtaining safety information about medication. This study highlights the need for improved evidence about medication safety in people with Charcot-Marie-Tooth disease. Development of evidence-based resources, increased awareness amongst health professionals about Charcot-Marie-Tooth disease and a team-based care approach could facilitate shared decisions about medication use for people with Charcot-Marie-Tooth disease.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Szigeti K, Lupski JR. Charcot-Marie-Tooth disease. Eur J Hum Genet. 2009;17(6):703–10.

    Article  CAS  PubMed Central  Google Scholar 

  2. Lencioni T, Piscosquito G, Rabuffetti M, Bovi G, Calabrese D, Aiello A, et al. The influence of somatosensory and muscular deficits on postural stabilization: insights from an instrumented analysis of subjects affected by different types of Charcot-Marie-Tooth disease. Neuromuscul Disord. 2015;25(8):640–5.

    Article  PubMed Central  Google Scholar 

  3. Bamford NS, White KK, Robinett SA, Otto RK, Gospe SM. Neuromuscular hip dyplasia in Charcot-Marie-Tooth disease type 1A. Dev Med Child Neurol. 2009;51:408–11.

    Article  Google Scholar 

  4. Padua L, Aprile I, Cavallaro T, Commodari I, Pareyson D, Quattrone A, et al. Relationship between clinical examination, quality of life, disability and depression in CMT patients: Italian multicenter study. Neurol Sci. 2008;29(3):157–62.

    Article  CAS  Google Scholar 

  5. Barreto LC, Oliveira FS, Nunes PS, de França Costa IM, Garcez CA, Goes GM, et al. Epidemiologic study of Charcot-Marie-Tooth Disease: a systematic review. Neuroepidemiology. 2016;46:157–65.

    Article  Google Scholar 

  6. Denton S, Schofield D, Poynten J, Stanley A (2015) Reducing the health burden of Charcot-Marie-Tooth in Australia. https://cmtaustralia.org.au/wp-content/uploads/2020/04/reducing-health-burden-of-CMT-Aust.pdf Accessed 14 July 2020.

  7. Mohammed MA, Moles RJ, Chen TF. Medication-related burden and patients’ lived experience with medicine: a systematic review and metasynthesis of qualitative studies. BMJ Open. 2016;6:e010035. https://doi.org/10.1136/bmjopen-2015-010035.

    Article  PubMed Central  Google Scholar 

  8. Weimer LH, Podwall D. Medication-induced exacerbation of neuropathy in Charcot Marie Tooth disease. J Neurol Sci. 2006;242:47–54.

    Article  Google Scholar 

  9. Weimer LH. Medication-induced peripheral neuropathy. Curr Neurol Neurosci Rep. 2003;3(1):86–92.

    Article  Google Scholar 

  10. Ibañez-Juliá MJ, Berzero G, Reyes-Botero G, Maisonobe T, Lenglet T, Slim M, et al. Antineoplastic agents exacerbating Charcot Marie Tooth disease: red flags to avoid permanent disability. Acta Oncol. 2018;57(3):403–11.

    Article  Google Scholar 

  11. Ucar M, Mjorndal T, Dahlqvist R. HMG-CoA reductase inhibitors and myotoxicity. Drug Saf. 2000;22(6):441–57.

    Article  CAS  PubMed Central  Google Scholar 

  12. Isbister GK, Burns J, Prior F, Ouvrier RA. Safety of nitrous oxide administration in patients with Charcot-Marie-Tooth disease. J Neurol Sci. 2008;268(1–2):160–2.

    Article  CAS  Google Scholar 

  13. Carlsen B, Glenton C. What about N? A methodological study of sample-size reporting in focus group studies. BMC Med Res Methodol. 2011;11(26):2–10.

    Google Scholar 

  14. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.

    Article  Google Scholar 

  15. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.

    Article  Google Scholar 

  16. Vinci P, Lapi G. Anaesthetic management in Charcot-Marie-Tooth disease type 2 due to a mutation in the mitofusin-2-gene. J Anaesthesiol Clin Pharmacol. 2011;27(2):286–7.

    Article  PubMed Central  Google Scholar 

  17. Ohshita N, Oka S, Tsuji K, Yoshida H, Morita S, Momota Y, et al. Anesthetic management of a patient with Charcot-Marie-Tooth disease. Anesth Prog. 2016;63(2):80–3.

    Article  PubMed Central  Google Scholar 

  18. Eisenberg E, River Y, Shifrin A, Krivoy N. Antiepileptic drugs in the treatment of neuropathic pain. Drugs. 2007;67(9):1265–89.

    Article  CAS  Google Scholar 

  19. Derry S, Bell RF, Straube S, Wiffen PJ, Aldington D, Moore RA. Pregabalin for neuropathic pain in adults. Cochrane Database of Systematic Reviews. 2019, Issue 1. Art. No.: CD007076.

  20. Gunathilake R, Boyce LE, Knight AT. Pregabalin-associated rhabdomyolysis. Med J Aust. 2013;199(9):624–5.

    Article  Google Scholar 

  21. CMTA. Neurotoxic Medications. https://www.cmtausa.org/living-with-cmt/managing-cmt/medications/. Accessed 14 July 2020.

  22. Längst G, Seidling HM, Stützle M, Ose D, Baudendistel I, Szecsenyi J, et al. Factors associated with medication information in diabetes care: differences in perceptions between patients and health care professionals. Patient Prefer Adherence. 2015;9:1431–41.

    Article  PubMed Central  Google Scholar 

  23. Budych K, Helms TM, Schultz C. How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient-physician interaction. Health Policy. 2012;105:154–64.

    Article  Google Scholar 

  24. Crowe AL, McKnight AJ, McAneney H. Communication needs for individuals with rare diseases within and around the healthcare system of Northern Ireland. Front Public Health. 2019;7:236. https://doi.org/10.3389/fpubh.2019.00236.

    Article  PubMed Central  Google Scholar 

  25. Lorimer S, Cox A, Langford NJ. A patient’s perspective: the impact of adverse drug reations on patients and their views on reporting. J Clin Pharm Ther. 2012;37:148–52.

    Article  CAS  Google Scholar 

  26. Babac A, von Friedrichs V, Litzkendorf S, Zeidler J, Damm K, von der Schulenburg JMG. Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information process in practice. BMC Med Inform Decis Mak. 2019;19:188. https://doi.org/10.1186/s12911-019-0911-z.

    Article  PubMed Central  Google Scholar 

  27. Maghsoodi N, Crook MA. A case of Charcot-Marie-Tooth (CMT) disease with hypercholesterolaemia and statin side-effects: a case report and literature review. J Clin Neurosci. 2017;38:57–9.

    Article  Google Scholar 

  28. Gibson Smith K, Booth JL, Stewart D, Pfleger S, McIver L, MacLure K. Supporting shared decision-making and people’s understanding of medicines: an exploration of the acceptability and comprehensibility of patient information. Pharm Pract. 2017;15(4):1082.

    Article  Google Scholar 

  29. Newman TV, San-Juan-Rodriguez A, Parekh NM, Swart ECS, Klein-Fedyshin M, Shrank WH, et al. Impact of community pharmacist-led interventions in chronic disease management on clinical, utilization and economic outcomes: an umbrella review. Res Soc Adm Pharm. 2020. https://doi.org/10.1016/j.sapharm.2019.12.016.

    Article  Google Scholar 

  30. Bruhn H, Bond CM, Elliott AM, Hannaford PC, Lee AJ, McNamee P, et al. Pharmacist-led management of chronic pain in primary care: results from a randomised controlled exploratory trial. BMJ Open. 2013;3:e002361. https://doi.org/10.1136/bmjopen-2012-002361.

    Article  PubMed Central  Google Scholar 

  31. Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9):796–804.

    CAS  Google Scholar 

Download references

Acknowledgements

The authors would like to thank the Charcot-Marie-Tooth Association of Australia who have supported our project as well as all participants for their valuable insights into this topic. We thank Rebecca Pratchett for her advice on using NVivo and Lyn Todd for her editorial oversight.

Funding

This project was funded by the Charcot-Marie-Tooth Association of Australia.

Author information

Authors and Affiliations

  1. Discipline of Pharmacy, Faculty of Health, University of Canberra, Bruce, ACT, 2617, Australia

    Astrid V. Socha Hernandez, Louise S. Deeks & Alison J. Shield

Authors
  1. Astrid V. Socha Hernandez
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Louise S. Deeks
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Alison J. Shield
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Alison J. Shield.

Ethics declarations

Conflicts of interest

All authors declare that they have no conflicts of interest.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Socha Hernandez, A.V., Deeks, L.S. & Shield, A.J. Understanding medication safety and Charcot-Marie-Tooth disease: a patient perspective. Int J Clin Pharm 42, 1507–1514 (2020). https://doi.org/10.1007/s11096-020-01123-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11096-020-01123-z

Keywords

Search

Navigation