The late onset of emotional distress in people with progressive multiple sclerosis during the Covid-19 pandemic: longitudinal findings from the CogEx study.

OBJECTIVE: An earlier follow-up study from the CogEx rehabilitation trial showed little change in symptoms of depression, anxiety and psychological distress during the first COVID-19 lockdown compared to pre-pandemic measurements. Here, we provide a second follow-up set of behavioral data on the CogEx sample. METHODS: This was an ancillary, longitudinal follow-up study in CogEx, a randomized controlled trial of exercise and cognitive rehabilitation in people with progressive MS involving 11 centres in North America and Europe. Only individuals impaired on the Symbol Digit Modalities Test (SDMT) were included. Participants repeated the COVID Impact survey administered approximately a year later and completed self-report measures of depression, anxiety and MS symptoms that had been obtained at the trial baseline and during the first COVID Impact survey. Participants who completed the second COVID Impact follow-up were included. To identify predictors of the participants' ratings of their mental and physical well-being, step-wise linear regression was conducted. RESULTS: Of the 131 participants who completed the first COVID impact survey, 74 participants completed the second follow-up survey (mean age 52 (SD = 6.4) years, 62.2% female, mean disease duration 16.4 (SD = 9.0) years, median EDSS 6.0). Pandemic restrictions prevented data collection from sites in Denmark and England (n = 57). The average time between measurements was 11.4 (SD = 5.56) months. There were no significant differences in age, sex, EDSS, disease course and duration between those who participated in the current follow-up study (n = 74) and the group that could not (n = 57). One participant had COVID in the time between assessments. Participants now took a more negative view of their mental/psychological well-being (p = 0.0001), physical well-being (p = 0.0009) and disease course (p = 0.005) compared to their last assessment. Depression scores increased on the HADS-depression scale (p = 0.01) and now exceeded the clinically significant threshold of ≥ 8.0 for the first time. Anxiety scores on the HADS remained unchanged. Poorer mental well-being was predicted by HADS depression scores (p = 0.012) and a secondary-progressive disease course (p = 0.0004). CONCLUSIONS: A longer follow-up period revealed the later onset of clinically significant depressive symptoms on the HADS and a decline in self-perceptions of mental and physical well-being associated with the COVID-19 pandemic relative to the first follow-up data point. TRIAL REGISTRATION: The trial was registered on September 20th 2018 at www. CLINICALTRIALS: gov having identifier NCT03679468. Registration was performed before recruitment was initiated.

Healthcare Disruptions and Use of Telehealth Services Among People With Multiple Sclerosis During the COVID-19 Pandemic.

OBJECTIVE: The current study examined health care disruptions and use of telehealth services among people with multiple sclerosis (pwMS) during the COVID-19 pandemic. DESIGN: Cross-sectional survey. SETTING: General community. PARTICIPANTS: Participants (N=163) included 70 pwMS and 93 healthy controls (HCs). The majority of respondents were from the United States (88%). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Rates of health care disruptions (eg, missing/canceling appointments, experiencing delays) and telehealth use for MS and non-MS medical care and mental health care. RESULTS: In this U.S. majority, predominantly White, and high socioeconomic status sample, 38% to 50% of pwMS reported experiencing disruptions in their MS and non-MS medical care and 20% to 33% reported disruptions in their mental health care; this was significantly lower than the rates observed among HCs. Compared with HCs, pwMS were more likely to use telehealth than in-person services, especially for mental health care. The majority of pwMS and HCs reported being satisfied with telehealth services. Individuals with higher degrees of functional limitation experienced more health care disruptions and were more likely to use telehealth services than individuals with lower degrees of functional limitation. CONCLUSIONS: Despite high health care disruption rates, pwMS frequently used and were highly satisfied with telehealth services during the COVID-19 pandemic. Due to physical limitations commonly observed in the MS population that may preclude travel, telehealth services should be continued even after resolution of the pandemic to expand access and reduce health care disparities.

The impact of the COVID-19 pandemic on engagement in activities of daily living in persons with acquired brain injury.

PRIMARY OBJECTIVES: This study examined (a) the impact of coronavirus disease-2019 (COVID-19) pandemic on engagement in activity participation in persons with acquired brain injury (ABI); and (b) whether changes in activity participation during the pandemic were associated participants' health-related quality of life (HRQoL). RESEARCH DESIGN: Exploratory online survey study. METHODS: Eighty-seven respondents with ABI and 98 healthy adults (HA) participated in this study. Engagement in activity participation during COVID-19 was calculated as a percentage of the activities participants performed before the pandemic. MAIN RESULTS: Participants with ABI modified their activities less than HA in order to maintain level of engagement in activity participation. They stopped performing more activities during the pandemic compared to HA and compared to their pre-pandemic engagement. Both groups continued to do similar percentage of activities without modifications compared to before the pandemic. Better HRQoL in both groups was predicted by a larger percentage of activities continued and fewer activities stopped. CONCLUSION: Results emphasize the importance of addressing activity participation changes during situations where there are disruptions of the individual's habits and routines in order to minimize negative consequences of such changes.

Aquatic exercise for persons with MS: Patient-reported preferences, obstacles and recommendations.

BACKGROUND: Many persons with multiple sclerosis (MS) have difficulties engaging in traditional land-based physical activity due to heat sensitivity and physical disability. Aquatic exercise may be a suitable alternative for these individuals, preventing overheating and enabling a range of movements that were otherwise difficult on land. The objective of the current study was to understand why some persons with MS prefer aquatic exercise while others prefer non-aquatic exercise, which will inform recommendations. METHODS: A total of 179 persons with MS completed a brief online survey (∼10 min) about their exercise routines between October 2020 and April 2021. RESULTS: Fifty-sex percent of respondents reported that they only engaged in non-aquatic exercise (i.e., land-based activities such as jogging), followed by 36% of respondents who reported that they engaged in both aquatic and non-aquatic exercise, and 7% of respondents who participated in aquatic exercise only. The most frequently reported barriers for aquatic exercise were lack of access to pools and its associated expense. Among individuals who had tried aquatic exercise, aquatic exercise was preferred over non-aquatic exercise, and 100% reported that they would recommend aquatic exercise to other persons with MS. Finally, the majority of respondents reported exercising less during the coronavirus disease 2019 (COVID-19) pandemic. CONCLUSION: Aquatic exercise is well liked among persons with MS who have tried it; however, it may not be feasible for economically disadvantaged persons with MS. Local charities and health organizations may consider financially sponsoring aquatic exercise programs to encourage participation in physical activity for the MS population. Due to the negative impact of the pandemic on exercise routines, MS clinicians should encourage their patients to resume their exercise routines once the pandemic subsides.

The impact of the COVID-19 pandemic on an international rehabilitation study in MS: the CogEx experience.

Pandemic restrictions have led to changes in therapy plans and disrupted rehabilitation services for people with multiple sclerosis. CogEx is an international, multicentre MS dual-intervention (cognitive rehabilitation, aerobic exercise) randomized, controlled rehabilitation trial confined to people with progressive disease. The primary outcome is cognition (processing speed).There are 11 treatment sites in six countries with participants required to make 27 site visits over 12 weeks. Collectively, the large, in-person demands of the trial, and the varying international policies for the containment of COVID-19, might disproportionately impact the administration of CogEx. During the first lockdown, all centres closed on average for 82.9 (SD = 24.3) days. One site was required to lockdown on two further occasions. One site remained closed for 16 months. Ten staff (19.2%) were required to quarantine and eight staff (15.4%) tested positive for COVID. 10 of 264 (3.8%) participants acquired COVID-19. All survived. The mean duration of enrollment delay has been [236.7 (SD = 214.5) days]. Restarting participants whose interventions were interrupted by the pandemic meant recalculating the intervention prescriptions for these individuals. While the impact of the pandemic on CogEx has been considerable, all study sites are again open. Participants and staff have shown considerable flexibility and resilience in keeping a complex, international endeavour running. The future in general remains uncertain in the midst of a pandemic, but there is cautious optimism the study will be completed with sufficient sample size to robustly evaluate our hypothesis and provide meaningful results to the MS community on the impact of these interventions on people with progressive MS.Trial registration: The trial was registered on September 20th 2018 at www.clinicaltrials.gov having identifier NCT03679468. Registration was performed before recruitment was initiated.

Relationships between changes in daily occupations and health-related quality of life in persons with multiple sclerosis during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic provided a unique opportunity to explore the impact of the mandated lockdown and social distancing policies on engagement in daily occupations for individuals with multiple sclerosis (MS) and able bodied (i.e. healthy) adults. The study also examined whether the changes in daily occupations were associated with health-related quality of life (HrQOL). METHODS: Between the spring and early fall of 2020, 69 persons with MS and 95 healthy adults completed an online survey that included measurements of 26 activities of daily life. For each activity, participants reported whether they continued to perform the activity (with or without adjustments), whether they stopped, or started to perform the activity during the pandemic. Social support, HrQOL, and demographics, including financial distress were also obtained. RESULTS: Participants with MS and healthy adults both reduced the number of activities performed during the pandemic. Healthy adults continued to do more activities with and without adjustments compared with participants with MS. In both groups, better HrQOL was associated with the number of activities participants continued to do with and without adjustments, and worse HrQOL with the number of activities they stopped doing. CONCLUSIONS: Fewer persons with MS engaged in everyday occupations than healthy adults following the COVID-19 pandemic. The ability to maintain occupational engagement and to participate in social and daily activities is important for maintaining high HrQOL in both groups. Thus, these results call for attention in treatment and self-management of MS symptomatology.

The emotional impact of the COVID-19 pandemic on individuals with progressive multiple sclerosis.

OBJECTIVE: Individuals with pre-existing chronic illness have shown increased anxiety and depression due to COVID-19. Here, we examine the impact of the COVID-19 pandemic on emotional symptomatology and quality of life in individuals with Progressive Multiple Sclerosis (PMS). METHODS: Data were obtained during a randomized clinical trial on rehabilitation taking place at 11 centers in North America and Europe. Participants included 131 individuals with PMS. Study procedures were interrupted in accordance with governmental restrictions as COVID-19 spread. During study closure, a COVID Impact Survey was administered via telephone or email to all participants, along with measures of depressive symptoms, anxiety symptoms, quality of life, and MS symptomatology that were previously administered pre-pandemic. RESULTS: 4% of respondents reported COVID-19 infection. No significant changes were noted in anxiety, quality of life, or the impact of MS symptomatology on daily life from baseline to lockdown. While total HADS-depression scores increased significantly at follow-up, this did not translate into more participants scoring above the HADS threshold for clinically significant depression. No significant relationships were noted between disease duration, processing speed ability or EDSS, and changes in symptoms of depression or anxiety. Most participants reported the impact of the virus on their psychological well-being, with a little impact on financial well-being. The perceived impact of the pandemic on physical and psychological well-being was correlated with the impact of MS symptomatology on daily life, as well as changes in depression. CONCLUSIONS: Overall, little change was noted in symptoms of depression or anxiety or overall quality of life.