While the COVID-19 pandemic had an impact on the psychological well-being of people with progressive forms of multiple sclerosis (MS), it led to minimal changes in depression, anxiety, and quality of life, according to data from an international survey.
This was true even for the 4% of patients who reported contracting the virus, which otherwise was found to worsen MS-related symptoms and daily limitations.
“Minimal effects were not what we expected to see,” Nancy Chiaravalloti, PhD, said in a press release. Chiaravalloti is the study’s lead author and director of the Centers for Neuropsychology and Neuroscience and Traumatic Brain Injury at the Kessler Foundation,
“People with progressive MS appeared to have adapted more effectively to the lockdown conditions,” she said, noting that the findings were consistent across different countries.
This adaptation may be associated with a higher sense of control due to early adoption of safety measures and patients’ experience with some degree of social isolation and health uncertainty, the researchers noted.
The study, “The emotional impact of the COVID-19 pandemic on individuals with progressive multiple sclerosis” was published in the Journal of Neurology.
Much like other infectious diseases, the COVID-19 pandemic has had a significant psychological and social impact in the general population. A previous review study showed that one third of the general population had anxiety and depression, and higher rates have been reported in women and people showing symptoms consistent with COVID-19 and poor perceived health.
This has raised concern for people with pre-existing chronic illness and at increased risk for infection, “placing individuals with MS in a uniquely vulnerable position to experience greater psychiatric symptomatology,” the researchers wrote.
In addition, given that people with progressive forms of the disease are generally the most impaired among MS patients, they may be at a higher risk of developing psychiatric symptoms when facing a pandemic.
Now, researchers evaluated whether people with progressive MS would have higher rates of depression and anxiety and poorer quality of life during COVID-19 lockdown, as compared with prior to the pandemic.
The study involved 131 of 138 progressive MS patients enrolled in an international clinical trial (NCT03679468) evaluating the effectiveness of cognitive rehabilitation and exercise in lowering cognitive dysfunction, which was suspended due to the pandemic. The trial is being undertaken at 11 centers across the U.S., Canada, U.K., Italy, Denmark, and Belgium.
Participants had a mean age of 52 years, 63.4% were women, and almost half (44.2%) were from Italy. They had been living with an MS diagnosis for a mean of 14.4 years.
A COVID Impact Survey and patient-reported outcomes related to depression, anxiety, quality of life, and MS symptoms were administered to patients via telephone or email from May to July — during the trial’s suspension and while they were under social restrictions.
The survey included questions related to self and family exposure to COVID-19, lockdown length, activities during lockdown, disease symptoms, interactions with healthcare providers, and the impact of the pandemic on patients’ psychological, physical, and financial well-being. Patient-reported measures also had been completed at trial enrollment.
Results showed that most participants reported some impact of the pandemic on their psychological well-being. However, there were no significant differences in terms of depression, anxiety, and quality of life during lockdown, compared with before the pandemic. The perceived impact of MS symptoms on daily activities also was minimal.
Notably, a significant increase in depressive symptoms was found in participants from Belgium, compared with those from the remaining five countries. There were no significant sex-dependent differences in depression, anxiety, or quality of life.
COVID infection was reported by five (4%) participants — an infection rate higher than that seen in the general population — and associated with symptom worsening and greater limitations in daily life. Still, these patients showed minimal changes in depression, anxiety, and quality of life.
Moreover, the perceived impact of the pandemic on physical and psychological well-being was associated with the impact of MS symptoms on daily life, as well as changes in depression.
Overall, the findings suggested that progressive MS patients adapted well to the pandemic. Chiaravalloti speculated that due to their known increased risk, these patients “may have been early adopters of safety precautions, which may have provided a sense of control that countered negative emotional reactions.”
“They are also accustomed to living with medical uncertainly and social isolation, two major factors that fueled high levels of psychological discomfort in the general population,” she added.
In addition, most participants reported engagement in mental (90%) and physical activities (71%) during lockdown, which was not surprising given the aim of the parent clinical trial, Chiaravalloti noted.
“Focusing on elements of a healthy lifestyle [promoted by the parent trial] may have mediated the negative effects on well-being in this group with progressive MS,” she said.
Most respondents also reported a high level of social support, and 57% had any interaction with their medical team during lockdown. The pandemic had little financial impact, according to the participants.
The team noted that it would be interesting to evaluate changes in stress levels in this patient population, since stress was reported to be elevated in the general population during the COVID-19 pandemic.
The study was supported by a grant from the MS Society of Canada.
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