In a survey, researchers indicated that the COVID-19 pandemic has placed extra barriers, including a lack of accessibility to patients and competing responsibilities, that have resulted in halts or delays to research on multiple sclerosis (MS) rehabilitation and quality of life.
In addition to the many ways that the COVID-19 pandemic has impacted the world, researchers have experienced a more difficult time conducting studies on multiple sclerosis (MS) rehabilitation and quality of life (QOL), according to a recently published study.
The study, published in the Multiple Sclerosis Journal—Experimental, Translational and Clinical, highlighted some of the negative effects that the pandemic has had on MS rehabilitation and QOL research, which largely depends on being able to see patients face-to-face.
“Understanding the challenges faced by researchers is important when anticipating the future of rehabilitation research and interventions designed to support people with MS [PwMS],” the investigators wrote.
Although much research has been devoted to understanding how the management of MS has changed during the pandemic, largely because of the mass shift toward digital consultations, less is known about the impacts on MS research.
In January and February 2021, the investigators invited MS researchers studying MS QOL and rehabilitation to participate in the study. The participants were invited through professional bodies or networks of members of the International Women in MS rehabilitation group. They were distributed a cross-sectional online survey aimed at gaining insight into challenges that researchers have faced and comparing challenges from before and after the onset of the pandemic.
In total, 87 researchers participated in the survey, of whom 76% (n = 66) were women, 85% (n = 74) worked full time, and 61% (n = 53) were at a mid to late career stage. The respondents had an average (SD) of 10 (7.3) years of experience in MS rehabilitation and QOL research. The average (SD) amount of time during the work week that the respondents worked on research was 57% (25.8%).
Eighteen countries were represented among the respondents, including the United States (n = 24), Italy (n = 16), Canada (n = 10), Austria (n = 9), France (n = 4), the United Kingdom (n = 3), Turkey (n = 3), Ireland (n = 3), Belgium (n = 3), Norway (n = 2), Switzerland (n = 1), Spain (n = 1), Slovenia (n = 1), Israel (n = 1), Germany (n = 1), Finland (n = 1), the Czech Republic (n = 1), and Australia (n = 1).
When asked to report their experience on a scale from 1 to 3, with higher scores denoting greater barriers, respondents were significantly more likely to report experiencing barriers to research since the pandemic began than before the pandemic (mean, 2.18 vs 1.61; P < .001). Only 22% (n =18) of respondents reported no additional barriers since the COVID-19 pandemic started, and 39% (n = 32) reported barriers “to some extent.” Additionally, 39% (n = 32) of respondents reported barriers “to a great extent” since the beginning of the pandemic compared with 6% (n = 7) who reported barriers prior to COVID-19.
For the respondents that chose to complete an open-text response, more barriers were mentioned since the pandemic than before the pandemic (n = 83 vs 57; P = .006). Compared with male participants, female participants were significantly more likely to report experiencing difficulties conducting research in rehabilitation and QOL following COVID-19 (mean [SD], 2.32 [0.95] vs 3.11 [1.13]; P = .007).
The most commonly reported barrier prior to the pandemic was difficulty obtaining funding (n = 19), managing time or having competing demands (n = 15), and lack of support or opportunity (n = 15). The most common barriers related to the onset of the pandemic were related to participant access (n = 38) and other COVID-19 interruptions and delays to research projects (n =18). Eleven respondents, all female, reported managing time and having competing demands as barriers since the pandemic, including mentions of childcare and remote schooling responsibilities.
The investigators noted 3 major limitations: that the sample may not have represented the scope of diversity among MS researchers, that the response rate for the invitees was unknown given the nature of the recruitment strategy, and that the cross-sectional design of the study warrants caution when interpreting the results.
“Given the call to prioritize areas of research supporting people with progressive MS in particular, it is vital that any barriers to research in the area of rehabilitation and QOL are tackled. It is also important that such obstacles are taken into account when planning how best to support researchers over the coming years, which will in turn have implications for the successful symptom management and wellbeing of PwMS,” the investigators suggested.
Maguire R, Hynes S, Seebacher B, et al. Research interrupted: the impact of the COVID-19 pandemic on multiple sclerosis research in the field of rehabilitation and quality of life. Mult Scler J Exp Transl Clin. 2021;7(3):1-6. doi:10.1177/20552173211038030