Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - MS Fatigue_Therapy (Objectively Measuring MS Fatigue)

Teaser

Multiple Sclerosis is the most common debilitating disease in young adults worldwide, diagnosed in over 2.3 million people. Though many daily symptoms are common in MS, 80% of persons with MS report experiencing debilitating tiredness. Further, this MS-specific tiredness is...

Summary

Multiple Sclerosis is the most common debilitating disease in young adults worldwide, diagnosed in over 2.3 million people. Though many daily symptoms are common in MS, 80% of persons with MS report experiencing debilitating tiredness. Further, this MS-specific tiredness is the most disabling symptom amongst ambulatory persons with MS and is identified as having the most significant impact on both ability to work and quality of life. Hippotherapy—an internationally-recognized therapeutic method utilizing horseback riding and certified instructors—has been shown to improve many daily debilitating symptoms in persons with multiple sclerosis.

The overall objectives of this project were twofold: 1) investigate whether and how hippotherapy impacts the daily symptomology of persons with MS, and 2) investigate whether a standardized test of movement behavior yielding robust data (i.e. BAST, Behavior Analysis Statistics and Test) can be utilized to diagnose and measure the symptom commonly known as “MS fatigue”.

Conclusions of the hippotherapy study show that persons with MS report many physical improvements as well as improvements in quality of life after four months of hippotherapy sessions. This information was best communicated by subjects\' written answers to open-ended questions rather than in numerically-rated data. The data of the hippotherapy study are currently informing ongoing movement behavior analyses of a diverse group of patients with MS, including patients who utilize mobility aides such as rollators and wheelchairs. It is predicted that the outcomes of this continuing work will have long-lasting clinical impact on patients with MS.

In the case of the second objective, this work highlights that both measurement and treatment of “MS fatigue” is highly complex and in great need of evolution in order to address the growing rates of MS incidence, associated disability, and social impact. Further, strategies for measuring the impact of therapies with obvious advantages (i.e., hippotherapy) require careful consideration.

Work performed

Fourteen female subjects with multiple sclerosis participated in hippotherapy one time per week for 16 weeks. The subjects completed the movement behavior test three times: first, before the hippotherapy sessions began; second, in the week after their sixteen sessions of hippotherapy ended; and, third, 16 weeks after the end of their hippotherapy sessions. At each movement test session, subjects were given a series of questionnaires to complete. The standardized questionnaires included the Bladder Control Scale (BLCS, 4 questions), Bowel Control Scale (BWCS, 5 questions), Fatigue Severity Scale (FSS, 9 questions), and UCLA Loneliness Scale (20 questions). One questionnaire (36 questions) was created specifically for the project, asking subjects to describe different aspects of their hippotherapy experience.

Although analyses of the FSS, UCLA Loneliness Scale, BLCS, and BWCS yield trends toward improvements from pre-hippotherapy to post-hippotherapy as well as improvements from pre-hippotherapy to 16 weeks after therapy concluded, no significant group differences are seen in any of the standardized questionnaire measures. Similarly, in the movement behavior data, a trend toward improvement was seen in the category of “toe balance;” however, there were no scales which showed significant group changes between timepoints. This lack of statistical significance in standardized measures between pre- and post-hippotherapy is a common outcome in the majority of studies on hippotherapy for persons with MS in case studies and pilot studies undertaken in the United States, Germany, New Zealand, and Sweden over the past 15 years. Indeed, there is one study of hippotherapy for persons with MS where significant differences were found between an intervention group and control group on standardized questionnaire scores (Vermöhlen, et al., 2017) and one study where significant physical differences were measured post-hippotherapy (Menezes, et al., 2013). Limitations such as small group size, instability and variability of multiple sclerosis disease activity, and dependence on question interpretation and self-report are a few of the challenges to isolating the impact of hippotherapy.

Although there were not statistically significant results in the movement scales and questionnaires, the questionnaire written for this study yielded highly significant results. In open-ended responses, patients commonly reported that they experienced less back pain, better walking (balance/stability/less spasticity), improved bladder control, feelings of happiness, and an enjoyment of being near and on the horse. Hence, involvement in hippotherapy made clearly positive changes in the lives of persons living with MS; however, as noted above, these very striking improvements are not reflected via statistical significance in standardized questionnaires. Perhaps no significant changes were found in the BLCS due to the small group size and use of catheters. Similarly, perhaps the items in the UCLA Loneliness Scale may not be impacted by patients’ feelings of happiness and enjoyment of being on and near the horse.

The results of this study have been communicated via in-person meetings to local DMSG (the German Multiple Sclerosis Foundation) Contact Groups, to the EOS Equine Therapy Center in the USA, and at the International Conference on Multimodal Communication in Osnabrück, Germany. This work has also been communicated in the USA via television interview, and in the USA and Germany via newspaper articles and will be submitted for journal publication. Links to this information can be found at the project webpage (https://sites.google.com/site/amylynnhubbard/current-projects).

Addressing the second of the two project goals, the first manuscript to be submitted for publication from this project will be a review of the historical and current understanding of “MS fatigue.” Indeed, Dr. Lauren Krupp—creator of the long-established clinical measure of MS f

Final results

In addition to the negative impact that MS has on the individual and their family, MS has a substantial country-wide financial impact. For example, 2015 and 2016 financial analyses estimate that healthcare costs for one person with MS range from 20,000 Euro or 30,000 USD to 68,000 Euro or 100,000 USD annually and average 4.1 million USD per MS patient over a lifetime. Hence, from the socioeconomic perspective, developing a system whereby the most significantly debilitating symptoms of MS (i.e., MS-related tiredness) can be systematically and objectively measured and treated is of imminent importance. In the first article to be submitted from this work, it is clearly shown that understanding of daily debilitating MS symptoms has progressed very little in the past 100 years. The goal of this first journal publication is to push the area of clinical neuro-immunology to begin long-needed analyses and discussions aimed at understanding these debilitating daily MS symptoms.

Website & more info

More info: https://sites.google.com/site/amylynnhubbard/current-projects.