Comparative effectiveness of cognitive behavioural therapy, modafinil, and their combination for treating fatigue in multiple sclerosis (COMBO-MS): a randomised, statistician-blinded, parallel-arm trial.

Background: Fatigue is one of the most disabling symptoms reported by people with multiple sclerosis. Although behavioural and pharmacological interventions might be partly beneficial, their combined effects have not been evaluated for multiple sclerosis fatigue, or examined with sufficient consideration of characteristics that might affect treatment response. In this comparative effectiveness research trial, we compared the effectiveness of cognitive behavioural therapy (CBT), modafinil, and their combination for treating multiple sclerosis fatigue.

Optimizing Detection and Prediction of Cognitive Function in Multiple Sclerosis With Ambulatory Cognitive Tests: Protocol for the Longitudinal Observational CogDetect-MS Study.

Background: Cognitive dysfunction is a common problem in multiple sclerosis (MS). Progress toward understanding and treating cognitive dysfunction is thwarted by the limitations of traditional cognitive tests, which demonstrate poor sensitivity and ecological validity. Ambulatory methods of assessing cognitive function in the lived environment may improve the detection of subtle changes in cognitive function and the identification of predictors of cognitive changes and downstream effects of cognitive change on other functional domains.

People with multiple sclerosis help design a tool to measure physical functioning and how it affects their daily lives: a plain language summary.

What Is This Summary About?: This summary describes how researchers worked with people with multiple sclerosis (MS), neurologists and measurement experts to create an easy-to-use questionnaire to measure the physical function of people with MS. This questionnaire covers topics that are relevant and important to people with MS and their doctors.The ability to do what you want to do, when you want to do it, is one of the most important concerns for people with MS.

Characterizing cannabis use in a sample of adults with multiple sclerosis and chronic pain: An observational study.

Background: Although cannabis has become an increasingly common method for pain management among people with multiple sclerosis (PwMS), there is a dearth of knowledge regarding the types of cannabis products used as well as the characteristics of cannabis users. The current study aimed to (1) describe the prevalence of cannabis use and the routes of administration of cannabis products in adults with an existing chronic pain condition and MS, (2) to examine differences in demographic and disease-related variables between cannabis users and non-users, and (3) to examine differences between cannabis users and non-users in pain-related variables, including pain intensity, pain interference, neuropathic pain, pain medication use, and pain-related coping.

Methods: Secondary analysis of baseline data from participants with multiple sclerosis (MS) and chronic pain (N = 242) enrolled in an RCT comparing mindfulness-based cognitive therapy (MBCT), cognitive-behavioral therapy (CBT), and usual care for chronic pain.

Self-efficacy trajectories of individuals newly diagnosed with multiple sclerosis.

Purpose/objective: The first year following a new multiple sclerosis (MS) diagnosis may be a critical time for individuals as they learn to manage their disease. Effective self-management of MS likely requires healthy self-efficacy levels, yet little is known about self-efficacy in the postdiagnosis period. This study aims to improve our understanding of self-efficacy in individuals newly diagnosed with MS by examining self-efficacy trajectories and identifying patient characteristics associated with trajectories in the first postdiagnosis year.

A comparison of anxiety symptoms and correlates of anxiety in people with progressive and relapsing-remitting multiple sclerosis.

Background: Anxiety appears to be more prevalent in people with multiple sclerosis (MS) than in the general population, though it is unclear if anxiety varies by MS disease course. There are experiences unique to each disease course that might increase the likelihood of anxiety. Additionally, the majority of research in MS has focused on people with relapsing-remitting MS (RRMS), while the experiences of people with progressive forms of MS are understudied.

The validity, responsiveness, and score interpretation of the PROMISnq Physical Function - Multiple Sclerosis 15a short form in multiple sclerosis.

Background: A valid, sensitive patient-reported outcome (PRO) measure of physical function (PF) for people with multiple sclerosis (MS) would have substantial value in routine care and clinical research. We now describe development of the PROMISnq Short Form v2.0 PF - Multiple Sclerosis 15a [PROMISnq PF(MS)15a] for assessing PF in relapsing and progressive MS.

Extension and Evaluation of the PROMIS Sexual Function and Satisfaction Measures for Use in Adults Living With Multiple Sclerosis.

Background: Sexual dysfunction is a common symptom of multiple sclerosis (MS). Clinically meaningful and psychometrically sound measures of sexual function validated in people with MS are necessary to identify people with MS who experience problems with sexual function.

Aim: To evaluate the Patient-Reported Outcomes Measurement Information System (PROMIS) Sexual Function and Satisfaction (SexFS) v2.

Patient-Centered Framework for Rehabilitation Research in Outpatient Settings.

Conducting high-quality clinical research is dependent on merging scientific rigor with the clinical environment. This is often a complex endeavor that may include numerous barriers and competing interests. Overcoming these challenges and successfully integrating clinical research programs into clinical practice settings serving rehabilitation outpatients is beneficial from both a logistical perspective (eg, supports efficient and successful research procedures) and the establishment of a truly patient-centered research approach.

Quality of life in individuals newly diagnosed with multiple sclerosis or clinically isolated syndrome.

Background: Little is known about quality of life (QOL) at the time of multiple sclerosis (MS) or clinically isolated syndrome (CIS) diagnosis and how it evolves in the critical adjustment period immediately following a new diagnosis.

Objectives: To (1) describe QOL trajectory in the first year post-MS/CIS diagnosis and (2) examine associations of demographic and biopsychosocial factors with QOL at baseline and as it evolves over the first year post-MS/CIS diagnosis.

Methods: Participants were N = 250 individuals newly diagnosed with MS or CIS.

Outdoor Adventure Programs for Persons with Multiple Sclerosis: A Review and Agenda for Future Research.

Persons with multiple sclerosis (MS) often experience myriad symptoms that affect functioning and quality of life (QOL). Although there are a growing number of nonpharmacologic interventions designed to improve symptom severity and interference and maximize QOL, these particular treatments are limited by barriers to accessibility and, at times, a poor patient-intervention fit. Thus, it is important to consider alternative or supplemental nonpharmacologic treatments for people with MS.

COVID-19 vaccine hesitancy in adults with multiple sclerosis in the United States: A follow up survey during the initial vaccine rollout in 2021.

Background: Multiple sclerosis (MS) organizations have recommended that adults with MS obtain the COVID-19 vaccination. Vaccine hesitancy is a barrier to full COVID-19 inoculation in the general population. Whether vaccine hesitancy is also a barrier towards optimizing vaccination rates in the MS community is unknown.

Standardizing fatigue measurement in multiple sclerosis: the validity, responsiveness and score interpretation of the PROMIS SF v1.0 - Fatigue (MS) 8a.

Background: Fatigue is one of the most common and the single most disabling symptom of multiple sclerosis (MS). However, there is a lack of consensus on the most appropriate fatigue measures in clinical practice and research, based upon rigorously validated, generalizable, and publicly available instruments. The objective of this research was to generate additional evidence regarding the validity and applicability of the PROMIS SF v1.

Differences in correlates of fatigue between relapsing and progressive forms of multiple sclerosis.

Background: Fatigue is one of the most prevalent and impactful symptoms for people with multiple sclerosis (MS). Yet, fatigue is less understood in progressive forms of MS, and few studies have explored the extent to which MS disease course is associated with fatigue. The current study aimed to (1) describe fatigue severity and fatigue interference (the extent to which fatigue interferes with individuals' physical, mental, and social activities) in people with progressive MS (primary progressive MS and secondary progressive MS); (2) compare fatigue severity and fatigue interference in people with progressive forms of MS to people with relapsing-remitting MS (RRMS); and (3) identify factors associated with fatigue severity and fatigue interference in people with progressive forms of MS and RRMS.

Public health adherence and information-seeking for people with chronic conditions during the early phase of the COVID-19 pandemic.

Introduction: People with chronic conditions, common among rehabilitation populations, may have risk factors that put them at higher risk for more severe illness due to coronavirus disease 2019 (COVID-19).

Objective: To describe and compare adherence to public health guidelines, willingness to adhere to public health guidelines (including vaccination), information-seeking, and perceived trustworthiness of information among people with and without chronic conditions during the early stages of the COVID-19 pandemic.

Design: National cross-sectional online survey of people with and without chronic health conditions conducted from April through May 2020.

Prevalence, co-occurrence, and trajectories of pain, fatigue, depression, and anxiety in the year following multiple sclerosis diagnosis.

Background: Pain, fatigue, depression, and anxiety are common in multiple sclerosis, but little is known about the presence, co-occurrence, and trajectories of these symptoms in the year after multiple sclerosis (MS) diagnosis.

Objectives: To determine, during the postdiagnosis year: (1) rates of pain, fatigue, depression, and anxiety; (2) rates of symptom co-occurrence; and (3) stability/change in symptom severity.

Methods: Newly diagnosed adults with MS/clinically isolated syndrome ( = 230) completed self-report measures of pain, fatigue, depression, and anxiety at 1, 2, 3, 6, 9, and 12 months after MS diagnosis.

Pain Intensity and Pain Interference in People With Progressive Multiple Sclerosis Compared With People With Relapsing-Remitting Multiple Sclerosis.

Objective: To describe pain intensity and interference in people with progressive multiple sclerosis (MS), compare these with people with relapsing-remitting multiple sclerosis (RRMS), and identify common and unique factors associated with pain intensity in people with progressive MS and RRMS.

Design: Observational, cross-sectional analysis using baseline data from a longitudinal survey on quality of life in participants with MS.

Setting: Community.

Development and pilot testing of a web-based symptom management program for multiple sclerosis: My MS toolkit.

We describe the process of working with stakeholders with multiple sclerosis (MS) to develop a web-based multisymptom self-management program to address chronic pain, fatigue, and/or depressive symptoms. The results of a pilot trial to test the feasibility and effects of the program are presented. The first study phase involved the development of a web-based symptom self-management program.

Willingness to obtain COVID-19 vaccination in adults with multiple sclerosis in the United States.

Background: As vaccines for the coronavirus become available, it will be important to know the rate of COVID-19 vaccine acceptability in adults with multiple sclerosis (MS), given that vaccination will be a key strategy for preventing SARS-CoV-2 infections. Using a national sample of adults with MS in the United States obtained early in the COVID-19 pandemic, the current study aimed to: (1) assess willingness to get a COVID-19 vaccine when available; (2) determine demographic, MS, and psychosocial correlates of vaccine willingness; and (3) measure where people with MS get their COVID-19 information and their perceived trustworthiness of such sources, which may influence COVID-19 vaccine willingness.

Methods: Adults with MS (N = 486) living in the United States completed a cross-sectional online survey (between 10 April 2020 and 06 May 2020) about their willingness to receive a COVID-19 vaccination once available.

Rapid transfer of knowledge for multiple sclerosis clinical care during COVID-19: ECHO MS.

Background: Healthcare providers caring for people with multiple sclerosis (MS) have had significant concerns about the intersection of MS and COVID-19. As a result, there has been an urgency to understand and share information about how to best provide MS clinical care during COVID-19. The Project ECHO model is well-suited for this challenge, as it provides a uniquely efficient and effective approach to sharing information in real-time using real cases.

Early Treatment Improvements in Depression Are Associated With Overall Improvements in Fatigue Impact and Pain Interference in Adults With Multiple Sclerosis.

Background: Depression, fatigue, and pain commonly co-occur in multiple sclerosis (MS) and are positively associated with one another. However, it is unclear whether treatment-related improvement in one of these symptoms is associated with improvements in the other two symptoms.

Purpose: This study examined whether early improvements in depressive symptoms, fatigue impact, and pain interference during a multisymptom intervention in persons with MS were associated with overall improvements in the other two symptoms.

Characterizing chronic pain phenotypes in multiple sclerosis: a nationwide survey study.

Chronic pain is highly prevalent in multiple sclerosis (MS). Pain heterogeneity may contribute to poor treatment outcomes. The aim of this study was to characterize pain phenotypes distributions in persons with MS and compare pain phenotypes in terms of pain intensity, frequency of chronic overlapping pain conditions, and use and analgesic effects of different classes of pain medications.

Distress and risk perception in people living with multiple sclerosis during the early phase of the COVID-19 pandemic.

Background: People living with MS during COVID-19 are experiencing the disruptions of the pandemic and concerns that their health status may place them at greater risk for worse COVID-19 outcomes.

Objective: This study sought to understand how people living with MS in the United States experienced distress and perceived their COVID-19-related risk during the first surge of the pandemic.

Methods: This was a web-based, self-report survey of people with MS who were living in the United States during the early stage of COVID-19.