Anxiety in people with multiple sclerosis during the COVID-19 pandemic: A mixed-methods survey.

OBJECTIVE: During the COVID-19 pandemic, anxiety in people with multiple sclerosis (PwMS) may have increased; however, little is known about the various factors which influenced this. We aimed to (a) identify the psychosocial modifiable associates of anxiety in PwMS in Ireland and the United Kingdom and (b) explore experiences of anxiety during the pandemic. METHOD: A cross-sectional survey was developed using public and patient involvement in 2021. This included measures of anxiety (Hospital Anxiety and Depression Scale [HADS-A]), social support (Multidimensional Scale of Perceived Social Support [MSPSS]), multiple sclerosis control self-efficacy (Multiple Sclerosis Self-Efficacy scale [MSSE]), exercise habits (Godin Leisure-Time Exercise Questionnaire [GLTEQ]), MS acceptance (Acceptance of Chronic Health Conditions scale [ACHC]), and intolerance of uncertainty (Intolerance of Uncertainty Scale-12 [IUS-12]), with open-ended questions asking about experiences of anxiety during COVID-19. A hierarchical regression analysis investigated the extent to which anxiety could be predicted by psychosocial modifiable factors after controlling for sociodemographic factors and multiple sclerosis (MS) type, while reflective thematic analysis was used to analyze open-ended responses. RESULTS: 287 PwMS completed the survey, with 58% reporting that their anxiety had increased during the pandemic. In order of magnitude, self-efficacy (ß = -.41), intolerance of uncertainty (ß = .35), social support (ß = -.21), and exercise habits (ß = .19) significantly predicted variance in HADS-A scores (p < .01). Themes describing sources of anxiety included personal health concerns, social concerns, and responsibilities/additional external burdens. In contrast, some PwMS reported that anxiety had decreased during COVID-19. CONCLUSIONS: While the generality of findings may be limited due to a predominately female sample of PwMS living in the United Kingdom and Ireland, results have the potential to inform the development of targeted interventions in rehabilitation psychology to reduce anxiety in this population. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

An evaluation of the role of community care in meeting the needs of people with multiple sclerosis in Ireland.

BACKGROUND: People with MS (PwMS) can experience a number of diverse needs which may be met by community-based services such as those delivered by MS Ireland (MSI), where Community Workers (CWs) provide support to PwMS on an individualised basis. However, while such support may be critical in helping PwMS adapt and cope with the challenges of living with MS, there has been little evaluation of the outcomes and impacts of this service to date. This study aimed to explore the perceived effectiveness and impacts of community work from the perspectives of both PwMS and CWs. METHODS: Using stakeholder engagement and public and patient involvement (PPI), two surveys were developed for (1) CWs, and (2) services users of MSI. A series of open and closed questions centred on the effectiveness of community work in meeting twelve distinct categories of needs taken from an adapted framework of rehabilitation and healthcare needs of PwMS. Both CWs and service users rated the extent to which these various needs were met through community work, as well as describing the mechanisms by which needs were met, and the challenges faced in meeting these needs. Separately, both groups described the perceived impacts of community work using open-text responses. RESULTS: Fifteen CWs and 367 PwMS, 269 (73%) of whom knew their CW, participated. Both groups rated community work positively in meeting the needs for information, emotional/psychological support and coordination of care, with lower perceived capacity for community work to meet needs for employment accommodations, caregiver support and homecare. Mann Whitney U tests did not find any significant difference between groups in the perceived capacity of community work to meet the various needs examined (p>.05). Core mechanisms by which CWs meet needs are by signposting to relevant services, listening, and facilitating peer support. Difficulty accessing external services was the primary challenge identified in meeting needs. Positive impacts of community work included the role that CWs play in fostering confidence and acceptance of MS, and in helping service users overcome the challenges of MS. CONCLUSION: Results suggest how CWs can help meet the needs of PwMS, while also highlighting the numerous positive impacts that community work has for this group. While it is clear that a number of unmet needs may remain due to a lack of access to other external services, this study shows how community-based services may play an important role in helping PwMS adapt to living with MS.

Potentially modifiable associates of anxiety in people with multiple sclerosis: a systematic review.

PURPOSE: A high percentage of people with multiple sclerosis (PwMS) experience anxiety, which can negatively impact quality of life. Despite this, anxiety in PwMS remains under researched. This review aims to identify associates with anxiety in PwMS that are amenable to change, with a view to informing the development of interventions in the area. MATERIALS AND METHODS: The following databases were searched for studies investigating anxiety in PwMS from 2015 to 2021: PsycINFO, PubMed, EMBASE, Web of Science. The search consisted of keywords relating to MS and fear, anxiety or worry. Once screening was completed by two reviewers, a narrative synthesis was used to analyze the data, with the MMAT used for quality appraisal. RESULTS: Of the 3117 unique abstracts screened, 39 studies met the criteria for inclusion. Evidence was found linking anxiety in PwMS to several modifiable factors broadly categorized as either psychological, social or lifestyle factors. Perceptions of self and one's ability to cope/adjust to MS emerged as important psychological factors. Physical activity and social support from friends were also linked with improved anxiety outcomes. CONCLUSIONS: Anxiety in PwMS is linked to a number of modifiable factors. Findings may help inform the development of rehabilitation interventions to decrease anxiety in MS.Implications for rehabilitationThis review highlights interventions which have successfully lowered anxiety in people with MS (PwMS); however, there is a clear need for the development of further interventions which target the pathologically specific concerns surrounding anxiety in this population.We show how a number of factors amenable to change associate with anxiety, suggesting that these factors may be appropriate targets for anxiety interventions in PwMS.Enhancing physical activity and self-efficacy are important means in which healthcare professionals can reduce anxiety in MS.Identifying ways of encouraging positive coping and increasing social support are further targets for improving comorbid anxiety in PwMS.Focusing on the modifiable factors highlighted here offers considerable potential for enhancing psychological wellbeing in this group.