Introduction While the current COVID-19 pandemic has affected the lives of many, there is a paucity of information on the impact on people with multiple sclerosis (MS). This study sought to gain insight into the impact of the current situation on people with MS and the factors that influence this. Methods 324 MS patients participated in this online cross-sectional survey during the COVID-19 lockdown period. A mixed methods design was used, with quantitative information collected on MS-related factors as well as COVID-19 impact and an open-ended, qualitative response looking for reasons behind the self-reported COVID-19 impact. Results We found that 48% of the participants reported that COVID-19 had a neutral impact on their lives and 16% reported a positive impact. However, 36% reported a negative impact, and had greater levels of MS- and non-MS-related worries, and higher levels of bother related to psychological and cognitive symptoms and fatigue than the groups reporting a neutral or positive impact. Significant predictors of this adversely affected group were age, type of MS and presence of psychological symptoms. Antidepressant medication use, time since diagnosis, gender, location, living arrangements or employment status did not predict impact. Open-ended responses explaining personal COVID-19 impact indicate that coping strategies may contribute to these findings. In particular, active, problem-focused approaches were reported by the majority of people who reported a positive impact, as well as a third of those who reported a neutral impact. Conclusion These findings suggest that younger people, those with progressive types of MS, and those with psychological symptoms are particularly vulnerable to the negative effects of a COVID-19 pandemic induced lockdown. Coping strategies provide further insight into these findings with those reporting active problem-focused approaches seemingly faring better than those who do not state any coping strategies. These results also have implications for understanding other like neurological conditions that share many similarities with MS and how best to direct support.

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Objective This systematic review explored the effectiveness of internet-delivered interventions in improving psychological outcomes of informal caregivers for neurodegenerative-disorder (ND) patients. Methods We searched seven databases for English-language papers published from 1999 to May 2021. Study-eligibility required that interventions used a minimum 50% internet-facilitation, targeting unpaid, adult informal caregivers of community-based ND-patients. We included randomised controlled trials (RCTs) and pre-post evaluative studies reporting outcomes for at least one-time point post-intervention. Independent quality checks on abstract and full-text screening were completed. Data extraction encompassed interventions’ features, approaches, theoretical bases and delivery-modes. The Integrated quality Criteria for the Review Of Multiple Study designs (ICROMS) framework assessed risk of bias. Alongside narrative synthesis, we calculated meta-analyses on post-intervention using outcome measures from at least two RCTs to assess effectiveness. Results Searches yielded 51 eligible studies with 3180 participants. In 48 studies, caregivers supported a dementia-diagnosed individual. Intervention-durations encompassed four weeks to 12 months, with usage-frequency either prescribed or participant-determined. The most frequently-used approach was education, followed by social support. We calculated meta-analyses using data from 16 RCTs. Internet-delivered interventions were superior in improving mastery (g  =  1.17 [95% CI; 0.1 to 2.24], p  =  0.03) and reducing anxiety (g = -1.29 [95% CI; −1.56 to −1.01], p < 0.01), compared to all controls. Findings were equivocal for caregivers’ quality of life, burden and other outcomes. High heterogeneity reflected the multifarious combinations of approaches and delivery-modes, precluding assessment of the most efficacious intervention features. Analyses using burden and self-efficacy outcomes’ follow-up data were also non-significant compared to all comparator-types. Although 32 studies met the ICROMS threshold scores, we rated most studies’ evidence quality as ‘very-low’. Conclusions This review demonstrated some evidence for the efficacy of internet-delivered interventions targeting informal ND-caregivers. However, more rigorous studies, with longer follow-ups across outcomes and involving NDs other than dementia, are imperative to enhance the knowledge-base.

BACKGROUND Community-based, informal caregivers of neurodegenerative disorder (ND) patients are particularly vulnerable to negative psychological outcomes. Preexisting interventions are often delivered using a face-to-face format, yet the logistics, demands and intensity of care-provision render them inaccessible. Using internet-facilitated delivery presents a solution to ensure caregivers can access support. However, previous reviews exploring this intervention-type have overlooked caregivers of rarer NDs such as Parkinson and Huntington disease. OBJECTIVE This systematic review explored the therapeutic approaches, theoretical bases, content and design features common across internet-facilitated interventions. We also assessed the effectiveness of interventions in improving informal caregivers’ outcomes, when compared to standard care alone or other active comparators. METHODS Searches of seven databases, including Web of Science, PubMed Central and MEDLINE, incorporated papers published in English from January 1, 1999 to May 31st 2021. We included randomised controlled trials (RCTs) and pre-post evaluative studies, which reported quantitative caregiver-derived psychological outcomes for at least one-time point post-intervention. Study-eligibility was restricted to those involving community-based, unpaid adult informal caregivers of ND patients and interventions where at least 50% was internet-facilitated. Data extraction encompassed interventions’ features, approaches, theoretical bases and modes of delivery. Risk of bias was assessed using the Integrated quality Criteria for the Review Of Multiple Study designs (ICROMS) framework. Meta-analytic calculations used post-intervention measures, reported for caregiver-outcomes in at least two RCTs, to assess effectiveness. Standardised mean differences (SMD) with 95% confidence intervals were calculated using the inverse variance method of Hedges g. Quality of evidence was assessed using the Grading of Recommendations, Assessment, Development and Evaluations framework (GRADE). RESULTS Searches generated 51 studies, involving 48 individual interventions, with 3180 participants. Only three studies involved caregivers supporting an individual diagnosed with a rarer ND. Interventions lasted from 4 weeks to 12 months in duration; usage was either prescribed or determined by participants. Of 16 RCT’s reporting post-intervention data appropriate for meta-analyses, internet-delivered interventions were superior in improving sense of mastery (7 RCTs; n=400; SMD 1.17, 95% CI; 0.1 to 2.24; p=0.03; I2=96%) and reducing anxiety (4 RCTs; n=279; SMD -1.29, 95% CI -1.56 to -1.01; p< 0.01; I2=95%) outcomes, compared to all comparator-types at postintervention. Findings were equivocal for caregivers’ quality of life, burden and other outcomes. Analyses using burden and self-efficacy outcomes follow-up data were also non-significant compared to all comparator-types. GRADE assessments rated evidence quality as ‘very-low’ for most analyses. High heterogeneity reflected the multifarious combinations of approaches and modes of delivery, precluding assessment of the most efficacious intervention features. CONCLUSIONS To enhance and expand the evidence-base of internet-delivered interventions targeting informal ND caregivers, more rigorous studies with longer follow-ups across outcomes, involving NDs other than dementia, are imperative.