Thank you for including research regarding the use of integrative medicine (IM) in multiple sclerosis (MS) care in the International Journal of MS Care. It is important to increase awareness and access to safe IM modalities that are found to be effective in MS care, including mindfulness, yoga, and dietary interventions.
We created a 6-week, weekly workshop series in 2020 titled Inspire My Soul (Inspire MS). Completed by 15 people aged 51 to 65 with relapsing and progressive forms of MS, the workshops included journaling, meditation, nutrition, therapeutic yoga, art, sound healing and music therapy, pelvic floor and balance therapy, health coaching, and soul therapy through songwriting. Participants completed the 36-Item Short Form Health Survey (SF-36), the Multiple Sclerosis Self-Efficacy Scale (MSSE), the DeltaQuest Wellness Measure (DQ Wellness), and the Multiple Sclerosis Wellness questionnaire1 (MSW) at weeks 1 and 6. A program evaluation was given at week 6 that included an opportunity for program reflection. While our submission was not accepted for publication, an important phenomenon that may affect similar studies was uncovered.
We expected our data to reflect the positive comments received during the program; however, there was negligible impact on the MSW, MSSE self-efficacy function, and the DQ Wellness, and a negative impact on the MSSE self-efficacy control scale. SF-36 results demonstrated the most statistically significant improvement according to means in health transition and mental components scores, but worse scores were seen on the physical components, vitality, and general health scales.
Our statistical results were disappointing and did not align with participants’ comments. Subjects said the program provided “a calm I have not experienced,” offered a “new perspective,” “forced me to make time for myself,” “improved my mood,” and was “cathartic.” The discrepancy in findings is potentially related to the response shift phenomenon.2,3 This phenomenon results when health status changes cause shifts in internal standards, values, and quality of life conceptualization, thus removing a theoretical veil of perception and normalizing a new reality. For example, an intervention may cause a person to recognize a need for help, when prior to the intervention, they would not have acknowledged it. This suggests improved self-efficacy that may initially have a negative connotation. It could also be inappropriately termed bias.
Our study was limited by a small sample size, no control group, minimal interprogram support, and no long-term follow-up. A qualitative study may better describe benefits from IM modalities that support healing through addressing physical, emotional, psychological, and spiritual aspects of an individual. Despite the data effect, we believe that integrative medicine modalities provide a safe and effective adjunct to conventional medical care by treating the whole person.
The identification of the response shift phenomenon has important implications for short-term programming used in MS centers and by MS patient advocacy organizations. It should be considered when data are at odds with program evaluations.4 Research methodologies, including qualitative research and statistical methods to detect response shift, will adequately reflect programming success and increase interest in these important integrative medicine programs.
REFERENCES
FINANCIAL DISCLOSURES: The original study was funded in part by grants from the International Organization of MS Nurses and the Multiple Sclerosis Foundation.