COVID-19 Stalling MS Research Into Rehabilitation, Quality of Life
The COVID-19 pandemic appears to be stalling research into rehabilitation and quality of life (QoL) for people with multiple sclerosis (MS) in many countries worldwide, a new observational study reports.
According to the study, many researchers have found it “significantly more” challenging to recruit participants for studies, and most investigators — across 18 countries — reported limited access to funding and research.
Moreover, for female researchers, increased family responsibilities on the homefront also have made it more challenging to focus on MS research — a barrier not reported by any male investigators.
“Although no gender differences were found in the number of barriers reported, female respondents were more likely to cite time or competing demands as barriers to research,” the scientists wrote.
The study, “Research interrupted: The impact of the COVID-19 pandemic on multiple sclerosis research in the field of rehabilitation and quality of life,” was published in Multiple Sclerosis Journal — Experimental, Translational and Clinical.
COVID-19 has negatively impacted research programs worldwide, affecting some more than others. Both MS rehabilitation and QoL research heavily depend on assessing patients face to face. However, with the pandemic and the widespread lockdowns that ensued, such in-person studies have been thought to have been negatively affected.
To learn more about the pandemic’s impact, a team of scientists from Europe, Canada, and the U.S. interviewed other researchers involved in MS rehabilitation and QoL studies. Between January and February 2021, the scientists sent online surveys to MS research professionals and research members of various MS rehabilitation groups.
The surveys asked about barriers that may have affected MS research before and after the COVID-19 pandemic, and whether gender contributed to the obstacles.
A total of 87 people completed the survey. The majority (85%) were female (76%), worked full-time, and were in the mid-late career stage (61%), with an average of 10 years’ experience. On average, more than half of the respondents’ working week (57%) was allocated to research.
The respondents came from 18 countries in total, with the largest numbers hailing from the United States, Italy, and Canada. Austria, France, the United Kingdom, Turkey, Ireland, Belgium, and Norway all had multiple respondents. One respondent each lived in Switzerland, Spain, Slovenia, Israel, Germany, Finland, the Czech Republic, and Australia. A total of 59% reported having to care for family members during the pandemic.
Compared with before the pandemic, the respondents were significantly more likely to report experiencing barriers after COVID-19. Interestingly, females were significantly more likely than males to perceive themselves as experiencing difficulties conducting MS rehabilitation or QoL research since COVID-19.
Before the outbreak, the most mentioned barriers were obtaining funding, time management, and poor research opportunities. However, after COVID-19, the most frequently cited barrier was limited access to study participants.
The respondents explained their challenges with statements such as: “significant restrictions on human subjects research,” “poor accessibility to patients,” and “COVID related restrictions mean that I cannot bring in patients to the lab for assessments.”
The researchers also experienced other difficulties such as project interruptions, facility closures, and funding cancellations.
Notably, only women reported caring responsibilities as a barrier to their research. These female respondents said that “spending more time facilitating at-home learning and providing childcare while schools were closed also significantly impacted my research,” and that it became “more difficult to dedicate sufficient time to research, especially given additional responsibilities with caring/home-schooling.”
The scientists leading this study said they also “uncovered some concerning reports of possible gender or career biases that may impede the progression of female and/or early career researchers in the future.”
The team said this is “partly in keeping” with other studies that suggest the COVID-19 pandemic has disproportionally affected female researchers. However, no firm conclusions could be drawn in this research, the team said.
“We suggest that this is something worth closely monitoring in the future, particularly regarding whether COVID-19 related interruptions may manifest into lower research outputs for female researchers in the coming years,” they wrote.
Although the scientists here approached many research networks globally for this study, they noted that the results might not represent the perceptions of all researchers involved in MS rehabilitation and QoL research, which may limit the study’s conclusion. However, they said their findings show that scientists involved in these research areas experience unique challenges that must be addressed.
Overall, the researchers wrote, “our analysis clearly highlights the negative impact that the COVID-19 pandemic has had on MS rehabilitation/QoL research.”
“Unsurprisingly, limited access to participants was common, with numerous reports of trials being halted or delayed,” the scientists wrote, noting that most barriers were the result of logistical issues, such as the closure of research facilities, and variables such as participants’ fear of contracting COVID-19.
“The lack of preliminary data due to the interruption of pilot trials during the pandemic may have long lasting implications for future funding and dissemination of knowledge in this area, ultimately impacting service provision for [people with multiple sclerosis],” the scientists wrote.
“It is vital that any barriers to research in the area of rehabilitation and QoL are tackled,” they added.
The team suggests that such obstacles are taken into account in the coming years as institutions and companies seek to support MS researchers, especially in the areas of rehabilitation and quality of life.