The workshop included weekly virtual meetings on journaling, meditation, yoga therapeutics, among other activities.
A recently conducted integrative medicine workshop had varying results, as patients had positive evaluations, but results from the Multiple Sclerosis Self-Efficacy Scale (MSSE) suggested a negative impact in Self-Efficacy Control and no to negligible effect on Self-Efficacy Function and DQ-Wellness measures, according to findings presented at the 37th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), October 13-15
A total of 15 patients with multiple sclerosis (MS) were included in the study, which was conducted over the course of 6 weeks, with patients joining weekly, virtual “Inspire My Soul” or “Inspire MS” workshops via Zoom between 10:30 AM and 2:30 PM. Patients completed the 36-Item Short Form Survey (SF-36), MSSE scale, and MS Wellness questionnaire during the first week and after 6 weeks.
Investigators, led by Megan Weigel, DNP, APRN-C, APHN-C, MSCN, founder, First Coast Integrative Medicine in Jacksonville, noted the surprising small, negative impact on the Self-Efficacy Control aspect of the MSSE (d = –0.26) and no to negligible effect on Self-Efficacy function and DQ-Wellness (0.05 and –0.08, respectively). The MS Wellness Questionnaire, which outlines validity and is under review, found similar results, with the program having no to negligible effect on DQ Wellness (d = –0.08).
Several SF-36 quality-of-life scales were improved, according to means, including physical functioning, role-physical, bodily pain, social functioning, and mental health. Health transition and mental components were also improved, but with a smaller standard deviation. SF-36 worsened scores were vitality, general health, and physical components, the last of which also had a smaller standard deviation.
Following program completion, MSSE Scale scores were evaluated by the Delta Question Foundations and the University of North Florida using SPSS. Contrary to MSSE data, the questionnaire indicated that participants felt program length was appropriate, with 53% of patients noting that administered surveys were “somewhat” representative of changes they saw and 41% stating they felt surveys were representative. All participants said they would recommend the program to another person with MS, with only 1 saying they would not join a series similar to Inspire MS.
“The positivity of our evaluations is at odds with the effects of the program on wellness and self-efficacy. Fortunately, we did see some improvements in scales that measured quality of life,” Weigel said in her presentation. “Now, potentially, this could be related to the response shift phenomenon, and that phenomenon is defined as health status changes causing shift in internal standard, values, and quality of life conceptualization of an individual, thus removing the veil and normalizing a new reality. So, people perhaps seeing that they do need to ask for help, or that their limitations are a little bit more robust than they thought—these things aren’t necessarily bad, they’re just not well-measured by the tools that we used.”
Workshops were led by expert consultants, who introduced a multitude of complementary and alternative strategies for treatment of MS, which are not often covered by insurance in the US. Modalities included journaling, meditation, nutrition and cooking, yoga therapeutics, art, sound healing, music therapy, health coaching and goal setting, therapy for the pelvic floor and balance, as well as soul therapy. ArtSparcs, the art instruction program, and yoga therapy were the 2 most popular sessions, investigators noted.
Participants were primarily women over the age of 51.0 years, all of whom had been living with MS for over 11 years and actively taking a disease-modifying therapy. A total of 6 patients did not complete the program after initial enrollment due to scheduling conflicts or unforeseen illness. Patients were recruited through neurologists in Jacksonville, Florida, social media, as well as nursing and MS organization contacts. Expedited review was granted by the Institutional Review Board at the University of North Florida.
Feedback following the study indicated a need for learning reinforcement, which may have been accomplished via a private Facebook group and weekly homework assignments. Also, despite Zoom tutorials ahead of the program, participants felt that Zoom detracted from the efficacy of the workshop and technical issues for a small number of participants would often interrupt the entirety of the group. Other limitations were due to the smaller sample size and the lack of a control group. The 6-week duration of the program was another limitation, potentially preventing patients from being able to fully integrate modalities into daily practice.
Weigel commented on the need to better define the response shift and introduce a qualitative component to efforts. Additional research is needed in CAM therapies within the MS space, as experts estimate 30%-80% of patients use alternative therapies as treatment options.
“We find that integrative medicine provides people living with MS as safe and effective adjunct to conventional medical care of whole-person MS treatment,” Weigel said.
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