A pilot randomized controlled trial of a telemedicine psychosocial intervention to improve symptom management in adults with long COVID: the COPE study protocol.

BACKGROUND: Long COVID is a serious public health concern due to its high prevalence and potentially debilitating symptoms. Symptoms may include fatigue, dyspnea, cognitive problems, insomnia, anxiety, and depression. There is currently no cure for long COVID, and the average length of recovery and proportion of patients who fully recover are still unknown. Subsequently, there is a critical need to improve function. Research in other chronic conditions suggests that psychosocial self-management interventions reduce symptom severity and interference with functioning. We describe the design of our study to examine the feasibility, acceptability, appropriateness, and preliminary efficacy of an intervention designed to improve symptom management and coping in adults with long COVID. METHODS: This pilot trial (N = 50) uses a pragmatic, randomized two-group parallel design set within the University of Washington Post-COVID Rehabilitation and Recovery Clinic. The self-management intervention is a 6-week, group-based telemedicine intervention that teaches evidence-based strategies to manage common symptoms and improve stress management as well as communication and self-advocacy. The comparator is a wait-list control. Participants complete self-report measures of the primary and secondary outcomes at baseline and post-treatment/wait-list. Primary outcomes include intervention feasibility, acceptability, and appropriateness. Secondary outcomes include Patient-Reported Outcomes Measurement Information System measures of fatigue, sleep disturbance, cognitive difficulties, self-efficacy, pain interference, depression and anxiety symptoms, and a measure of long COVID symptoms and impression of change. At post-intervention, intervention participants also complete a qualitative interview to inform intervention refinement. Quantitative data will be examined using descriptive and statistical analysis including t-tests and chi-square tests to compare the intervention and wait-list groups on secondary outcomes. Qualitative data will be analyzed using the rigorous and accelerated data reduction technique (RADaR). DISCUSSION: Results of this pilot randomized controlled trial will characterize the feasibility, acceptability, and appropriateness of the self-management intervention and inform intervention refinement necessary prior to further testing. Long COVID is a public health concern, and rehabilitation approaches that equip patients to manage symptoms may improve patient function and quality of life and reduce burden on the health care system. TRIAL REGISTRATION: NCT05658536. December 16, 2022.

Scale development to evaluate differences between concern about falling and fear of falling: the concern and fear of falling evaluation.

Purpose: Individuals with multiple sclerosis (MS) experience fear of falling (FOF), which is associated with negative health and quality-of-life consequences. Prior research has used FOF and concern about falling (CAF) interchangeably, but persons with MS report that CAF and FOF represent separate constructs that lie on a continuum. Unfortunately, no scale exists to understand the differences between CAF and FOF. Therefore, we developed a novel questionnaire, the Concern and Fear of Falling Evaluation (CAFFE), in which respondents rank their CAF and FOF on a continuum across various activities. This study aims to describe the scale development process and examine its psychometric properties. Methods: In a single online survey, MS participants responded to demographic questionnaires, indicated whether they experience CAF and FOF, and completed the CAFFE. Psychometric evaluation of the CAFFE involved internal consistency, split-half cross validation, exploratory factor analysis (EFA), and confirmatory factor analysis (CFA). Results: Out of 1,025 respondents, 64.6% reported CAF and 47.2% reported FOF. The EFA yielded a two-factor solution encompassing activities in open (factor 1) and closed environments (factor 2). The CFA replicated this two-factor solution and the CAFFE demonstrated excellent internal consistency (α = 0.98). Conclusion: The 27-item CAFFE is a highly reliable and valid measure capturing the tipping point at which point CAF moves to FOF. Future research should seek to define the tipping point from the MS community, as CAF may be an adaptive mechanism, whereas FOF may be a maladaptive behavior.

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. Outdoor adventure programs-group-based outdoor adventures aimed at enhancing QOL and fostering personal growth-could be one such alternative or supplemental approach. This topical review provides an overview of outdoor adventure programs; explores the current literature on these types of programs for the general population and medical populations; examines how outdoor adventure programs could enhance mood, functioning, and QOL for individuals with MS; and suggests future directions for research on outdoor adventure programs tailored to persons with MS.

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. PARTICIPANTS: Survey respondents were people with and without chronic conditions, ≥18 years old, able to read English, and in the United States since January 2020. In total, 3109 survey responses were received and 2572 complete unique responses were used in the analysis. METHODS: The survey assessed demographics, adherence to public health measures, information-seeking, and perceived trustworthiness of information sources. Descriptive analyses characterized the sample, and t-tests and nonparametric tests were used to compare those with and without a chronic condition on the public health measures. RESULTS: Participants with a chronic condition reported high adherence to public health recommendations and high willingness to adhere to anticipated recommendations across a wide range of chronic conditions and similar to those without a chronic condition despite advised caution for people with underlying health conditions. Of those with a chronic condition, 70.8% reported a willingness to be vaccinated. Participants reported accessing information from varied sources, with perceived trust highest for the health care providers and lowest for social media. CONCLUSION: Participants reported high adherence to public health measures, regardless of chronic condition status, during the early phase of the COVID-19 pandemic. Knowledge of adherence to public health measures, information-seeking, and trust in information can assist rehabilitation providers and organizations seeking to mitigate disease transmission, particularly for those with chronic conditions.

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. METHODS: Secondary analysis of baseline data from participants with MS (N = 573; progressive forms of MS n = 142; RRMS n = 431) in a survey-based longitudinal study on healthy aging in people with a physical disability. Primary outcomes were average fatigue severity (0-10 Numerical Rating Scale), and fatigue interference (PROMIS Fatigue Short Form). Correlates were variables across the demographic and biopsychosocial domains, collected with validated self-reported measures. Statistical methods included t-test and chi-square analyses to compare fatigue severity and fatigue interference in people with progressive MS to those with RRMS, and multiple regression analyses to examine the association of variables with fatigue severity and fatigue interference. RESULTS: Participants with progressive forms of MS reported moderate to severe levels of average fatigue severity (5.9 ± 2.8) and elevated levels of fatigue interference (T-Score of 58.2 ± 7.9). There were no group differences between people with progressive MS and RRMS in average fatigue severity or fatigue interference. Common factors associated with greater fatigue severity were lower income, being unemployed, shorter disease duration, greater disability, and greater sleep disturbance. Common factors associated with fatigue interference were younger age, lower income, being unemployed, greater disability, lower alcohol consumption, being a smoker, and greater sleep disturbance. For those with progressive forms of MS, longer MS disease duration was associated with lower average fatigue severity (b = -0.08, t(532) = -3.69, p < .001) and having a college degree or higher was associated with higher fatigue interference (b = 2.84, t(520) = 2.23, p = .026). CONCLUSION: In this sample, fatigue severity and fatigue interference were similar for progressive forms of MS and RRMS. Future research should consider if interventions that work for fatigue management in people with relapsing forms of MS work similarly for people with progressive forms of 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. To investigate vaccine hesitancy and inform efforts to increase vaccine uptake in the MS population, we conducted a follow up survey of a national sample of adults with MS living in the United States who completed an initial survey early in the COVID-19 pandemic. The current study aimed to answer questions vital to understanding vaccine hesitancy, specifically: (1) What is the prevalence of COVID-19 vaccine hesitancy in early 2021? (2) What are the reasons for and factors associated with current hesitancy? (3) How has vaccine willingness and hesitancy changed from April/May 2020 to January/February 2021? and (4) Who has changed in their vaccine willingness? METHODS: Adults with MS living in the United States (N = 359) completed two online surveys (the first between 10 April 2020 and 06 May 2020; the second between 11 January 2021 and 08 February 2021) about their willingness and intent to obtain a COVID-19 vaccine. Participants also completed measures to assess factors potentially related to vaccine hesitancy, including demographics, MS variables, influenza vaccine history, vaccine concerns, and contextual factors, including perceived risk for SARS-CoV-2 infection, trust in COVID-19 information source, anxiety, and loneliness. RESULTS: Of the participants who completed the second survey in early 2021, 20.3% were vaccine hesitant, that is, either reporting that they were undecided (13.9%) or not intending to get vaccinated (6.4%). Vaccine hesitancy decreased between the two surveys, with nearly three-fourths (73.8%) of the second sample reporting that they planned to obtain the COVID-19 vaccine. Vaccine hesitancy was associated with having a lower level of education, being non-White, not having a recent flu vaccination, holding a lower perception of one's risk of getting COVID-19, and having lower trust in the Centers for Disease Control and Prevention. Participants who were vaccine hesitant reported concerns about the long-term effects of the vaccine, the vaccine approval process, and the potential impact of the vaccine given their own health conditions/history. Notably, 90% of the undecided group wanted additional information about the vaccine before deciding. Vaccine willingness changed over time, with many of those who were somewhat willing more willing to get the COVID-19 vaccine at survey 2. Individuals who were unwilling at survey 1 were highly likely to remain unwilling at survey 2. CONCLUSION: Overall, COVID-19 vaccine hesitancy decreased during the pandemic, although one in five adults with MS were hesitant in early 2021. Of those who were undecided, most indicated that they wanted additional information about the vaccine before deciding whether to be vaccinated, suggesting additional educational efforts on the vaccine's safety, long-term effects, and potential health implications are still needed. Findings indicate that public health efforts may be best focused on those who are undecided, whose vaccine hesitancy may change over time and, possibly, with appropriate information or intervention.

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. PARTICIPANTS: A total of 573 adults with MS (N=573; progressive MS, n=142; RRMS, n=431). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Average pain intensity was measured by an 11-point numeric rating scale, and pain interference was measured by the Patient-Reported Outcomes Measurement Information System Pain Interference Short Form. RESULTS: Participants with progressive MS reported moderate average pain intensity (3.22±2.50) and elevated pain interference (T score of 55.55±9.13). They did not differ significantly from those with RRMS in average pain intensity or pain interference. Common factors associated with higher average pain intensity were more severe disability, lower education level, unemployment, and current smoking. In those with progressive MS, older age was associated with lower average pain intensity. CONCLUSIONS: Pain intensity and interference are similar across MS types. In addition to assessing and treating pain, it is important to screen for modifiable pain-related factors, such as smoking cessation, in this population.

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. Participants also completed measures to describe the sample and to assess factors potentially related to vaccine willingness, including demographics, MS-specific variables, psychological measures, COVID-19 information sources, and perceived trustworthiness of their information sources. RESULTS: Approximately two-thirds of the participants (66.0%) reported a willingness to obtain a future COVID-19 vaccine, whereas 15.4%of the sample was unwilling. Greater willingness to receive the vaccine was associated with having a higher level of education and holding a higher perception of one's risk of catching COVID-19. Participants reported accessing COVID-19 information from many different sources. Approximately a third (31.6%) of the sample reported getting their information from healthcare providers. Healthcare providers and the National MS Society had the highest perceived trustworthiness for COVID-19 information. The perceived trustworthiness of information sources was highly associated with vaccine willingness. CONCLUSION: Early in the pandemic, willingness to get a COVID-19 vaccine was not universal in this large sample or people living with MS. Vaccine willingness was associated with a few variables including education level, perceived risk for COVID-19 infection, and trust in COVID-19 information sources. These results have important implications for guiding healthcare providers and the MS community as COVID-19 vaccines become widely available.

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. Primary outcomes were depression, anxiety, and positive-affect and well-being. Participants (N = 491) also provided data on demographics, MS-related factors, COVID-19 factors, and psychological coping. RESULTS: Psychological distress was associated with age, psychological coping strategies, and having had symptoms consistent with COVID-19, but not with MS disease-related variables and COVID-19 risk factors. Perception of COVID-19-related risk was associated with age, MS disease severity, COVID-19-related factors, and anxiety. CONCLUSION: This study demonstrated that even during COVID-19, distress and risk perception are primarily driven by psychological factors, experiencing symptoms consistent with COVID-19 and age, with minimal contribution from individual differences in health status, providing an impetus for continued efforts to optimize psychological interventions for people living with MS.

Depressive Symptoms and Suicidal Ideation in Progressive Multiple Sclerosis Compared With Relapsing-Remitting Multiple Sclerosis: Results From a Cross-sectional Survey.

OBJECTIVES: To (1) describe depressive symptom severity and suicidal ideation (SI) in persons with progressive multiple sclerosis (MS); (2) compare depressive symptom severity and SI in persons with progressive MS and persons with relapsing-remitting multiple sclerosis (RRMS); and (3) identify common and unique risk factors for greater depressive symptom severity and SI in persons with progressive MS compared with individuals with RRMS. DESIGN: Observational, cross-sectional survey study. SETTING: Community. PARTICIPANTS: Adults with MS (N=573). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The dependent variables were depression symptoms and any SI measured by the Patient Health Questionnaire-9. Comparisons between groups used t tests and chi-square analyses, and risk factors were tested by examining the interaction of MS subtype (progressive MS and RRMS) and each risk factor in multiple regression models with bootstrapping. RESULTS: Persons with progressive MS did not differ from persons with RRMS in levels of depressive symptoms or SI. Both groups reported mild depressive symptoms and approximately 10% endorsed SI. Common risk factors for greater depressive symptom severity were younger age, greater disability, greater speech and swallowing problems, and lower household income. Common risk factors for SI were shorter disease duration, greater disability, and greater speech and swallowing problems. CONCLUSIONS: In this sample, there were no group differences between persons with progressive MS and persons with RRMS in depressive symptom severity and SI. Although both groups reported mild depressive symptoms on average, nearly 1 in 4 persons met criteria for probable major depression, which underscores the importance of screening for and treating depressive disorders in all persons with MS.

Utility of the Athlete Drinking Scale for assessing drinking motives among high school athletes.

Research suggests that high school athletes are at greater risk for heavy alcohol use and alcohol-related problems than their non-athlete peers. Drinking motives unique to the athletic experience may contribute to elevated use. The Athlete Drinking Scale (ADS) was designed to assess sport-related motives for alcohol use, but has not yet been validated among high school athletes. The purpose of this study was to examine the psychometric properties of the ADS among a sample of high school athletes. Participants were 216 high school student-athlete drinkers who completed anonymous self-report surveys. A confirmatory factor analysis resulted in a revised three-factor solution with a satisfactory overall model fit. Path analyses indicated that the Positive Reinforcement motives subscale was the only ADS subscale that was significantly associated with alcohol use and alcohol-related problems when controlling for the effects of the other factors (i.e., age and gender) in this population. The ADS may be a valuable assessment tool for researchers and clinicians involved in alcohol prevention efforts for high school athletes.

A confirmatory factor analysis of the Protective Behavioral Strategies Scale among OEF/OIF veterans.

INTRODUCTION: Military veterans of the wars in Afghanistan and Iraq (OEF/OIF/OND) are at-risk for increased alcohol consumption and alcohol-related consequences. The Protective Behavioral Strategies Scale (PBSS) has been shown to be a reliable and valid measure of assessing strategies to facilitate more responsible drinking and to reduce alcohol-related harm among college student populations. The purpose of this study was to examine the psychometric properties of the PBSS among the OEF/OIF veteran population. METHOD: Participants were 251 veterans (94% male; 83% White; M age=31.77years) who were participating in a larger alcohol intervention trial and reported consuming alcohol within the past 30days. RESULTS: Confirmatory Factor Analyses indicated the model fit of the PBSS was similar to college student samples. Although a confirmatory three-factor model best fits the data, model fit indices were slightly below commonly accepted guidelines. All PBSS subscales were negatively correlated with alcohol outcomes. Greater use of Manner of Drinking (MOD) and Stopping/Limiting Drinking (SLD) strategies were associated with less alcohol consumption and lower peak BAC. Greater use of MOD strategies was associated with less alcohol-related problems. CONCLUSIONS: Findings provide initial support for use of the PBSS among OEF/OIF veterans. Strategies aimed at Stopping/Limiting Drinking and the Manner of Drinking may be more effective with a veteran sample. Additional studies examining the external validity of this measure are encouraged.