An interventional program composed of physical activity and psychological support may help improve fatigue levels in myasthenia gravis patients, a small pilot trial found. The results, however, were not sustained over time, and a bigger study is needed, researchers said.
The study titled “A Physical and Psychological Approach to Managing Fatigue in Myasthenia Gravis: A Pilot Study” was published in the Journal of Neuromuscular Diseases.
Fatigue is not only highly common in myasthenia gravis patients — estimates say that more than 80 percent of patients are affected — but also it is a significant factor contributing to poor quality of life, impacting the ability to perform activities of daily living, work, and social life.
Unlike other disease symptoms such as muscle weakness, fatigue due to myasthenia gravis is not helped by drug therapies.
In this pilot study, a team of researchers investigated whether physical therapy and psychology interventions could help patients better manage fatigue.
They recruited nine myasthenia gravis patients with stable disease (mean duration of disease was 11.6 years) and who were disabled by symptoms of fatigue to enroll in a 10-week program that incorporated both physical and psychological interventions.
Before engaging in the activities, patients were evaluated according to the myasthenia gravis composite score and replied to a series of questionnaires to evaluate their fatigue levels. These included the fatigue severity scale (FSS), the modified fatigue impact scale (MFIS), and the visual analog fatigue scale (VAFS), as well as other surveys for assessing the disease’s impact on daily living.
Researchers quantified participants’ fatigue at the start of the program, at its end, and three months later.
The program was administered by a myasthenia nurse, a neuromuscular physiotherapist, and a neuropsychologist. It was designed to introduce “safe and effective physical activity for patients, encouraging them to integrate appropriate levels of exercise into their lives depending upon their individual fitness levels and motivational experience,” researchers wrote.
Additionally, the program included a space for patients to discuss in group meetings the emotions they commonly experience due to fatigue and other negative symptoms such as pain, sleep deprivation, anger, and frustration. The discussions aimed to encourage and help them to manage symptoms.
“The program integrated the characteristics of the shared decision making paradigm, where the patient is the ‘source of control’ and the program was patient-centered,” researchers wrote.
The physical part of the program included simple aerobic exercises targeting patients’ resistance and flexibility with the aim of improving their well-being, energy levels, and fatigue.
A physiotherapist worked on breathing and relaxation methods to help patients develop strategies for sleep and rest.
Patients were encouraged to develop their own personalized activity program that would best meet their needs.
During the program, researchers noted a small improvement in the physical and psychosocial subscale of the MFIS, but the differences were not statistically significant.
There was significant improvement in the VAFS at the end of the program, from a mean of 1.7 at the start to 4.9 at the end, but no clear improvement was noted in the fatigue severity scale.
Unfortunately, three months after the program ended, all fatigue scores declined to baseline.
Half of the patients did make lifestyle changes and reported that they were still using the exercise and breathing techniques they learned during the program. They said they were able to better manage stress.
Overall, “this pilot study showed small improvements in fatigue levels when applying combined physical and psychological therapies in MG patients. The MFIS and VAFS are useful fatigue outcome scales which are relevant to MG patients and are easy to apply,” researchers wrote.
Due to the small number of patients, “a larger-scale study is required to investigate and confirm these observations further,” they added.
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