Mindfulness meditation is associated with improvements in quality-of-life measures, depression, and anxiety over time compared with usual care in patients with amyotrophic lateral sclerosis (ALS), according to results reported in the European Journal of Neurology.1
“Mindfulness has been reported by a couple of our studies as a relevant psychological aspect for the well-being of people with ALS. Being in the moment, aware, open, and with a flexible attitude is crucial to cope with the challenges that the disease may bring,” lead investigator Francesco Pagnini, PsyD, PhD, from Catholic University of Milan, Italy, told Neurology Advisor.
ALS is a progressive neurodegenerative disorder resulting in muscle weakness and wasting. Patients eventually lose the ability to speak, swallow, move, and breathe independently and will die from respiratory failure within 3 to 5 years.2
The estimated prevalence of ALS in the United States is between 4.7 and 5.0 cases per 100,000 persons based on data from 2012 and 2013.3
At this time, the care of patients with ALS focuses on optimizing quality of life and symptom management. Previous studies have shown that patients with ALS with more anxiety and depression report lower quality-of-life measures2; however, the studies have been predominantly observational and have had little focus on interventions.
Using a mindfulness-based stress reduction program modified for people with ALS, Dr Pagnini and colleagues sought to evaluate the efficacy of mindfulness in improving quality-of-life measures in a group of patients with ALS.
The investigators conducted an open-label, randomized controlled trial comparing an 8-week meditation training based on the mindfulness-based stress reduction program and usual care in patients with ALS. Participants were assessed with the ALS-Specific Quality of Life Revised scale (ALSSQoL-R), the Hospital Anxiety and Depression Scale, and the Five Facet Mindfulness Questionnaire at baseline and months 2, 6, and 12.
The study enrolled and randomly assigned 100 participants with ALS 1-to-1 into a usual care and a mindfulness group. There were no significant differences between the groups at baseline, including quality of life, anxiety, or depression. Over the course of the 12-month study, both groups had patients lost to follow-up as a result of withdrawal from symptom progression and death.
The investigators found that meditation training was associated with improvements in the ALSSQoL-R trend over time (β = 0.24; P =.015; d = 0.89), as well as depression (β = 0.93; P =.013; d = 1.06) and anxiety (β = 0.96; P =.038; d = 0.78). Improvements were also observed for trends in ALSSQoL-R negative emotions and interactions in the meditation group.
The investigators acknowledged several limitations of the study, including the fact that the usual care group had no structured intervention as a comparison and the meditation group may have shown improvement secondary to more attention. The researchers ultimately concluded that meditation “can be integrated in current multidisciplinary care and may represent a new way to enhance the [quality of life] in people with ALS.”
“Being aware of how we are in a certain moment…dramatically increases well-being,” Dr Pagnini said. “Meditation practice, for those who are interested, can be a very helpful resource against stress and depressive thoughts. Furthermore, meditation teaches how to talk to the self, which can be used to improve acceptance of the lack of movements in advanced ALS stages.”
- Pagnini F, Marconi A, Tagliaferri A, et al. Meditation training for people with amyotrophic lateral sclerosis: a randomized clinical trial [published online February 23, 2017]. Eur J Neurol. doi: 10.1111/ene.13246
- van Groenestijn AC, Kruitwagen-van reenen ET, Visser-meily JM, Van den berg LH, Schröder CD. Associations between psychological factors and health-related quality of life and global quality of life in patients with ALS: a systematic review. Health Qual Life Outcomes. 2016;14(1):107. doi: 10.1186/s12955-016-0507-6
- Mehta P, Kaye W, Bryan L, et al. Prevalence of amyotrophic lateral sclerosis – United States, 2012-2013. MMWR Surveill Summ. 2016;65(8):1-12. doi: 10.15585/mmwr.ss6508a1