Contributions
Abstract: EP1730
Type: Poster Sessions
Abstract Category: Therapy - Others
Background: Due to the chronic nature of MS, alternative therapeutic approaches are on the rise. Helminth Therapy (i.e. inoculation with helminthic parasites) is an approach that many view as very alternative, but with promising underlying scientific evidence for immunological involvement. With many alternative therapies, public utilization of the therapy often occurs prior to evidence acquired from clinical trials. Therefore, experiential knowledge becomes an important source of information.
Aim: The aim of this study was to explore the opinion of people with MS regarding helminth therapy and its use in the management of MS.
Methods: Interpretative description, an applied qualitative research approach, was used in this study. The data sources were online forums including blogs and discussion boards. Multiple investigators identified, extracted and analyzed the data. Preliminary codes were established using whole data immersion, inductive thematic analysis and triangulation.
Results: Four main themes were generated: 1) the experience of living with MS; 2) influential factors in contemplating Helminth Therapy; 3) logistical decisions to be made, and 4) concerns. The difficulty of living with an incurable condition, a dissatisfaction with current therapy in improving symptoms that impact their quality of life (QoL) and a shift to alternative therapy seeking was evident in theme 1. Theme 2 highlights social influences, perceived scientific evidence, expectations and hope. Following contemplation, logistics such as where to access the worms, type of worm, administration method, monitoring uptake and cost were evident. Theme 4 involved concerns such as side effects, long-term complications and social stigma of Helminth therapy.
Conclusion: Overall, there was a general consensus that conventional therapies were not providing meaningful improvement for people living with MS. When seeking alternative therapies, a paucity of available scientific evidence promotes the use of internet resources for information. However, blogs and other social media forums can contain biased opinions, including those that may not be scientifically supported. Therefore, although Helminth Therapy has not yet proven beneficial in clinical trials of people lining with MS and is not currently a recommended therapy, it is important to recognize that online media forums convey messages of efficacy and improved QoL, which can influence the decision for people with MS to obtain this therapy.
Disclosure: M.C. Kirkland: nothing to disclose; S.J. Donkers: no conflict of interest, receives funding from MS Society of Canada, University of Saskatchewan, Saskatchewan Health Research Foundation, Saskatchewan Centre for Patient-Oriented Research; M. Charabati: nothing to disclose; L.O. Osborne: nothing to disclose.
Abstract: EP1730
Type: Poster Sessions
Abstract Category: Therapy - Others
Background: Due to the chronic nature of MS, alternative therapeutic approaches are on the rise. Helminth Therapy (i.e. inoculation with helminthic parasites) is an approach that many view as very alternative, but with promising underlying scientific evidence for immunological involvement. With many alternative therapies, public utilization of the therapy often occurs prior to evidence acquired from clinical trials. Therefore, experiential knowledge becomes an important source of information.
Aim: The aim of this study was to explore the opinion of people with MS regarding helminth therapy and its use in the management of MS.
Methods: Interpretative description, an applied qualitative research approach, was used in this study. The data sources were online forums including blogs and discussion boards. Multiple investigators identified, extracted and analyzed the data. Preliminary codes were established using whole data immersion, inductive thematic analysis and triangulation.
Results: Four main themes were generated: 1) the experience of living with MS; 2) influential factors in contemplating Helminth Therapy; 3) logistical decisions to be made, and 4) concerns. The difficulty of living with an incurable condition, a dissatisfaction with current therapy in improving symptoms that impact their quality of life (QoL) and a shift to alternative therapy seeking was evident in theme 1. Theme 2 highlights social influences, perceived scientific evidence, expectations and hope. Following contemplation, logistics such as where to access the worms, type of worm, administration method, monitoring uptake and cost were evident. Theme 4 involved concerns such as side effects, long-term complications and social stigma of Helminth therapy.
Conclusion: Overall, there was a general consensus that conventional therapies were not providing meaningful improvement for people living with MS. When seeking alternative therapies, a paucity of available scientific evidence promotes the use of internet resources for information. However, blogs and other social media forums can contain biased opinions, including those that may not be scientifically supported. Therefore, although Helminth Therapy has not yet proven beneficial in clinical trials of people lining with MS and is not currently a recommended therapy, it is important to recognize that online media forums convey messages of efficacy and improved QoL, which can influence the decision for people with MS to obtain this therapy.
Disclosure: M.C. Kirkland: nothing to disclose; S.J. Donkers: no conflict of interest, receives funding from MS Society of Canada, University of Saskatchewan, Saskatchewan Health Research Foundation, Saskatchewan Centre for Patient-Oriented Research; M. Charabati: nothing to disclose; L.O. Osborne: nothing to disclose.