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1.
Neurodegener Dis Manag ; : 1-7, 2024 Jul 26.
Article in English | MEDLINE | ID: mdl-39054910

ABSTRACT

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. This questionnaire could help doctors to record and manage how much MS affects people's lives.MS can bring a range of challenging symptoms such as 'brain fog', tiredness, and problems with movement and balance. Many of these symptoms can make day-to-day activities, like working, very difficult for people with MS. Doctors currently use examinations like the Expanded Disability Status Scale (EDSS) and the MS Functional Composite (MSFC), but these do not fully consider what is important to people living with MS. A questionnaire that specifically measures physical functioning of people with MS could help doctors and people with MS to better understand, communicate and manage the physical effects of MS. In this study, people with MS were asked to help create a questionnaire about physical function that reflects topics that are important to them. WHAT WERE THE RESULTS?: The PROMIS®nq physical function - Multiple Sclerosis 15a (the PROMIS® PF MS questionnaire) was successfully created with the help of people with MS. People with MS thought that the PROMIS® PF MS questionnaire covered issues important to their physical function. Scores were in line with results of other physical symptom measurement scales like the EDSS. WHAT DO THE RESULTS MEAN?: The PROMIS® PF MS questionnaire could be used to meaningfully record physical function among people with MS.

2.
Mult Scler Relat Disord ; 75: 104742, 2023 Jul.
Article in English | MEDLINE | ID: mdl-37156034

ABSTRACT

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. Statistical methods included t-tests, Mann-Whitney tests, chi-square tests, and Fisher's exact tests to assess for differences in demographic, disease-related, and pain-related variables between cannabis users and non-users. RESULTS: Of the 242 participants included in the sample, 65 (27%) reported the use of cannabis for pain management. The most common route of administration was oil/tincture (reported by 42% of cannabis users), followed by vaped (22%) and edible (17%) products. Cannabis users were slightly younger than non-users (Medage 51.0 vs 55.0, p = .019) and reported higher median pain intensity scores (6.0 vs 5.0, p = .022), higher median pain interference scores (5.9 vs 5.4, p = .027), and higher median levels of neuropathic pain (20.0 vs 16.0, p = .001). CONCLUSIONS: The current study identified factors that may intersect with cannabis use for pain management and adds to our current knowledge of the types of cannabis products used by PwMS. Future research should continue to investigate trends in cannabis use for pain management, especially as the legality and availability of products continue to shift. Additionally, longitudinal studies are needed to examine the effects of cannabis use on pain-related outcomes over time.


Subject(s)
Cannabis , Chronic Pain , Medical Marijuana , Multiple Sclerosis , Neuralgia , Adult , Humans , Middle Aged , Chronic Pain/drug therapy , Chronic Pain/epidemiology , Chronic Pain/complications , Medical Marijuana/therapeutic use , Multiple Sclerosis/complications , Multiple Sclerosis/epidemiology , Multiple Sclerosis/drug therapy , Neuralgia/complications
3.
Rehabil Psychol ; 68(2): 204-211, 2023 May.
Article in English | MEDLINE | ID: mdl-36951739

ABSTRACT

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. RESEARCH METHOD/DESIGN: Newly diagnosed adults with MS/clinically isolated syndrome (CIS) (N = 230) completed a battery of questionnaires, including the University of Washington Self-Efficacy Scale, at 1, 2, 3, 6, 9, and 12 months, postdiagnosis. Sankey diagrams characterized self-efficacy trajectories and a multiple regression model tested patient characteristics as predictors of self-efficacy change scores. RESULTS: Mean self-efficacy T-scores ranged from 50.79 to 52.04 (SD = 9.40 and 10.12, respectively) across the postdiagnosis year. MS diagnosis (vs. CIS), higher disability levels, and higher MS symptom severity were associated with lower self-efficacy levels at baseline. Baseline symptom severity predicted change in self-efficacy levels from baseline to month 12 (B = -0.05, p = .030). CONCLUSIONS/IMPLICATIONS: Self-efficacy remains relatively stable in the first year following a MS diagnosis, though high symptom severity is associated with decreased self-efficacy at 12-months postdiagnosis. Clinical characteristics (e.g., MS diagnosis, disability level) also appear to play a role in setting the course of self-efficacy in this postdiagnosis year. Timely interventions that enhance self-efficacy and/or improve certain clinical characteristics may promote healthy self-management of MS that carries forward in disease course. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Subject(s)
Disabled Persons , Multiple Sclerosis , Self-Management , Adult , Humans , Self Efficacy , Health Status
4.
Mult Scler Relat Disord ; 63: 103918, 2022 Jul.
Article in English | MEDLINE | ID: mdl-35700673

ABSTRACT

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. This study examined anxiety in people with progressive MS (PMS) and examined group differences in anxiety compared to people with RRMS, and assessed unique and common correlates of anxiety in people with PMS and RRMS. METHODS: Secondary analysis of data from the fourth survey in a longitudinal study of quality of life in people with physical disabilities. The current study included a subset of participants with MS. Anxiety level was measured by the 4-item Patient-Reported Outcomes Measurement Information System - Anxiety Short Form T-score. T-test and chi-square analyses were used to compare groups. Correlates of anxiety were tested by examining the interaction of MS subtype (PMS and RRMS) and each potential correlate in multiple regression models with bootstrapping. RESULTS: Participants were 464 adults with MS (PMS n = 183; RRMS n = 281) who were predominately female, non-Hispanic white, and not employed with a mean age of 56.9 ± 10.3 years and disease duration of 17.5 ± 9.3 years. On average, participants with PMS reported anxiety symptoms (50.6 ± 8.6) that were comparable to those in the United States general population and statistically lower than participants with RRMS (52.8 ± 9.5; p = .01). Across MS courses, common factors associated with greater anxiety symptoms were shorter disease duration, lower household income, greater speech and/or swallowing problems, and current smoking (tobacco), adjusted R2 = .19, F(4, 391) = 22.68, p < .001. There was no evidence of unique correlates of anxiety symptoms in participants with either MS course. CONCLUSIONS: In this community sample, people with MS, regardless of disease course, reported similar levels of anxiety to the United States general population. This is inconsistent with prior literature that largely involves clinical samples, suggesting a need for further research with community samples of individuals with MS. This discrepancy may also be due to measurement differences between studies (e.g., screen versus symptom measures). Participants with RRMS reported greater average anxiety compared to those with PMS. This statistically significant difference was small and not clinically significant, indicating the need for further examination and replication. Overall, the findings highlight the wide heterogeneity of anxiety presentation within people with MS and identify potential factors to improve conceptualization and treatment of anxiety in this population. Further research is needed with community and clinical samples to understand anxiety in MS as well as risk and protective factors to improve conceptualization and treatment of anxiety in this population.


Subject(s)
Multiple Sclerosis, Chronic Progressive , Multiple Sclerosis, Relapsing-Remitting , Multiple Sclerosis , Adult , Aged , Anxiety/epidemiology , Disease Progression , Female , Humans , Longitudinal Studies , Middle Aged , Multiple Sclerosis/complications , Multiple Sclerosis, Chronic Progressive/complications , Multiple Sclerosis, Chronic Progressive/drug therapy , Multiple Sclerosis, Chronic Progressive/epidemiology , Multiple Sclerosis, Relapsing-Remitting/complications , Multiple Sclerosis, Relapsing-Remitting/drug therapy , Multiple Sclerosis, Relapsing-Remitting/epidemiology , Quality of Life
5.
Mult Scler Relat Disord ; 62: 103753, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35598408

ABSTRACT

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. Also, the validity, reliability, and responsiveness of the PROMISnq PF(MS)15a is evaluated, minimal important difference (MID) thresholds for score change estimated and a score interpretation guide developed. METHODS: A mixed-methods sequential design was employed. Relevant PF concepts were elicited through semi-structured interviews with people with relapsing MS, and then mapped to the PROMIS PF item bank. Measurement experts integrated results from interviews with people with MS and input from a panel of neurologists to generate a draft short form. Relevance and comprehensiveness of the draft short form were assessed in cognitive debriefing interviews with people with relapsing or progressive MS. Subsequently, item reduction and evaluation of psychometric properties were performed in two observational studies: a cross-sectional study in the US (n = 296), and a 96-week longitudinal study in the UK MS Register cohort (n = 558). The main outcomes and measures are estimates of: known-groups validity, convergent validity, reliability, responsiveness; MID for worsening. RESULTS: Factor analyses supported the unidimensionality of the newly derived 15-item short form. Cronbach's alpha (≥ 0.97) and intraclass correlation coefficient (≥ 0.97) of test-retest scores (5-27 days) indicated strong reliability. Convergent validity was demonstrated by moderate-to-strong correlations with scores on related PRO measures. Scores discriminated among patient groups classified by levels of physical health and other criteria. Score changes of 2.3-2.7 points are proposed as MID criteria for minimal worsening in PF. CONCLUSION: PROMISnq PF(MS)15a demonstrated reliability, validity and sensitivity to change. Input from patients and clinicians ensured the content is comprehensive and relevant for people with MS.


Subject(s)
Multiple Sclerosis , Cross-Sectional Studies , Humans , Longitudinal Studies , Multiple Sclerosis/diagnosis , Patient Reported Outcome Measures , Psychometrics/methods , Reproducibility of Results , Surveys and Questionnaires
6.
J Sex Med ; 19(5): 719-728, 2022 05.
Article in English | MEDLINE | ID: mdl-35367163

ABSTRACT

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) v2.0 measure in people with MS and to extend the PROMIS SexFS Brief and Full Profiles to include additional aspects of sexual function relevant to people living with MS. METHODS: A convenience sample of MS clinicians and sexually active individuals with MS ranked relevance of 26 items that listed specific factors that interfere with sexual function. Rankings were used to select items to include in the modified SexFS for Multiple Sclerosis (SexFS-MS) profiles. Sex-FS Brief and Full profiles along with the top 22 ranked interfering factor items underwent cognitive interviews (CI) to assess whether the items were understandable and meaningful. OUTCOMES: The SexFS as originally published functioned well in people with MS after minor modifications. RESULTS: Twelve MS clinicians and 26 people with MS ranked items. The 10 highest ranked questions about factors that interfere with sexual function most relevant to people with MS were added to the SexFS-MS Brief profiles and 18 to the Full profiles. Ten men and 12 women with MS participated in CIs and found most items to be clear and meaningful. However, important changes were made to the profile instructions, some response sets, and to some items to improve clarity and function. New items to assess numbness and reasons why sexually active people choose at times not to engage in sexual activity were added. CLINICAL IMPLICATIONS: Brief and Full profiles are freely available and are recommended for research and clinical practice that include people with MS. STRENGTHS & LIMITATIONS: This study is the first to provide validity evidence for the PROMIS SexFS in people living with MS. Though the PROMIS SexFS was tested in people who identify as lesbian, gay, or bisexual, only individuals who identified as heterosexual participated in this study. Results may not represent views of people with MS who identify as other sexual orientations who may have different concerns and priorities related to sexual function. CONCLUSION: This study extended the PROMIS SexFS Brief and Full profiles to create the SexFS-MS by adding items that measure most relevant issues related to sexual function in individuals living with MS. Amtmann D, Bamer AM, Salem R, et al. Extension and Evaluation of the PROMIS Sexual Function and Satisfaction Measures for Use in Adults Living With Multiple Sclerosis. J Sex Med 2022;19:719-728.


Subject(s)
Multiple Sclerosis , Sexual Dysfunction, Physiological , Adult , Female , Humans , Male , Multiple Sclerosis/complications , Personal Satisfaction , Self Report , Sexual Behavior/psychology , Sexual Dysfunction, Physiological/diagnosis , Sexual Dysfunction, Physiological/etiology
7.
Arch Phys Med Rehabil ; 103(8): 1684-1692, 2022 08.
Article in English | MEDLINE | ID: mdl-35307343

ABSTRACT

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. Leveraging our experience with navigating this research-clinical care relationship, this article (1) proposes the Patient-Centered Framework for Rehabilitation Research, a model for integrating patient-centered research in an outpatient clinical setting that incorporates a collaborative, team-based model encompassing patient-centered values, as well as strategies for recruitment and retention, with a focus on populations living with disabilities or chronic diseases; (2) describes application of this framework in a comprehensive specialty multiple sclerosis center with both general strategies and specific examples to guide adaptation and implementation in other settings; and (3) discusses the effect of the framework as a model in 1 center, as well as the need for additional investigation and adaptation for other populations. The 5 interconnected principles incorporated in the Framework and which prioritize patient-centeredness include identifying shared values, partnering with the clinical setting, engaging with the population, building relationships with individuals, and designing accessible procedures. The Patient-Centered Framework for Rehabilitation Research is a model presented as an adaptable roadmap to guide researchers in hopes of not only improving individual patients' experiences but also the quality and relevance of rehabilitation research as a whole. Future investigation is needed to test the Framework in other settings.


Subject(s)
Disabled Persons , Outpatients , Chronic Disease , Humans , Patient-Centered Care , Rehabilitation Research
8.
J Neurol ; 269(5): 2560-2572, 2022 May.
Article in English | MEDLINE | ID: mdl-34665331

ABSTRACT

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. Participants completed self-report assessments of QOL, demographics, and biopsychosocial factors at 1, 2, 3, 6, 9, and 12 months post-diagnosis using validated measures. RESULTS: At 1-month post-diagnosis, QOL M = 75.2/100 with subsequent assessments revealing consistent ratings on average. Modelling revealed a small number of variables that were predictive of QOL at baseline and/or change in QOL over time. CONCLUSION: QOL in the first year post-MS/CIS diagnosis was, on average, high and stable. A subset of modifiable factors across the biopsychosocial spectrum was associated with baseline level of QOL and change in QOL over time. The stability in QOL suggests that patients can be assessed early after diagnosis for key variables that are predictive of both current and future QOL.


Subject(s)
Demyelinating Diseases , Multiple Sclerosis , Demyelinating Diseases/diagnosis , Humans , Multiple Sclerosis/diagnosis , Multiple Sclerosis/psychology , Quality of Life/psychology , Self Report
9.
Mult Scler ; 28(4): 620-631, 2022 Apr.
Article in English | MEDLINE | ID: mdl-34132141

ABSTRACT

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 (N = 230) completed self-report measures of pain, fatigue, depression, and anxiety at 1, 2, 3, 6, 9, and 12 months after MS diagnosis. Clinical significance was defined based on standardized cutoffs. Descriptive statistics and Sankey diagrams characterized rates and trajectories. RESULTS: Participants endorsed clinically significant symptoms at some point in the postdiagnosis year at rates of 50.9% for pain, 62.6% for fatigue, 47.4% for depression, and 38.7% for anxiety. A majority of patients exhibited co-occurring symptoms-21.3% with two, 19.1% with three, and 17.4% with four. The proportions of patients with clinically significant symptoms were generally stable over time; however, rates of symptom development/recovery revealed fluctuations at the individual level. CONCLUSIONS: Pain, fatigue, depression, and anxiety are prevalent in newly diagnosed MS. Prompt screening and evidence-based interventions are necessary if quality of life is to be optimized.


Subject(s)
Multiple Sclerosis , Adult , Anxiety/diagnosis , Anxiety/epidemiology , Anxiety/etiology , Depression/diagnosis , Depression/epidemiology , Depression/etiology , Fatigue/diagnosis , Fatigue/epidemiology , Fatigue/etiology , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/diagnosis , Multiple Sclerosis/epidemiology , Pain/diagnosis , Pain/epidemiology , Pain/etiology , Prevalence , Quality of Life
10.
Int J MS Care ; 23(4): 186-192, 2021.
Article in English | MEDLINE | ID: mdl-34483758

ABSTRACT

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.

11.
PM R ; 13(11): 1249-1260, 2021 11.
Article in English | MEDLINE | ID: mdl-34218517

ABSTRACT

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.


Subject(s)
COVID-19 , Pandemics , Adolescent , Cross-Sectional Studies , Humans , Information Seeking Behavior , Public Health , SARS-CoV-2 , Surveys and Questionnaires , United States/epidemiology
12.
Mult Scler Relat Disord ; 54: 103109, 2021 Sep.
Article in English | MEDLINE | ID: mdl-34237561

ABSTRACT

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.


Subject(s)
Multiple Sclerosis, Chronic Progressive , Multiple Sclerosis, Relapsing-Remitting , Multiple Sclerosis , Sleep Wake Disorders , Fatigue/epidemiology , Fatigue/etiology , Humans , Longitudinal Studies , Multiple Sclerosis/complications , Multiple Sclerosis/epidemiology , Multiple Sclerosis, Chronic Progressive/complications , Multiple Sclerosis, Chronic Progressive/epidemiology , Multiple Sclerosis, Relapsing-Remitting/complications , Multiple Sclerosis, Relapsing-Remitting/epidemiology
13.
Mult Scler Relat Disord ; 54: 103163, 2021 Sep.
Article in English | MEDLINE | ID: mdl-34325399

ABSTRACT

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.


Subject(s)
COVID-19 , Influenza Vaccines , Multiple Sclerosis , Adult , COVID-19 Vaccines , Cross-Sectional Studies , Follow-Up Studies , Humans , Multiple Sclerosis/epidemiology , Pandemics , SARS-CoV-2 , United States/epidemiology , Vaccination
14.
Mult Scler Relat Disord ; 54: 103117, 2021 Sep.
Article in English | MEDLINE | ID: mdl-34256350

ABSTRACT

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 v1.0 - Fatigue (MS) 8a, including content validity, reliability, construct validity and responsiveness, as well as to assess minimal important difference (MID) estimates and a score interpretation tool to aide meaningful individual level score interpretation. METHODS: A mixed-methods, sequential design was followed. Cognitive debriefing (CD) interviews (n=29) were performed with MS patients, to assess the relevance and comprehensiveness of the PROMIS Fatigue (MS) 8a scores. To evaluate the psychometric properties of the PROMIS Fatigue (MS) 8a, two observational studies were conducted: a cross-sectional study at two US MS centers (n=296), and a 96-week longitudinal study in a UK MS Register cohort (n=384). Main outcomes and measures were estimates of known-groups validity, convergence validity, reliability, and responsiveness, a guide for interpreting PROMIS Fatigue (MS) 8a T-scores, and anchor-based MID estimates. RESULTS: The CD interviews confirmed the comprehensiveness and relevance of the PROMIS Fatigue (MS) 8a in assessing MS fatigue. Cronbach's alpha (>0.9) and intra-class correlation coefficient (≥0.9) for test-retest scores at 5-7 days follow-up, supported strong internal consistency and test-retest reliability. Hypothesized differences were found across patient groups in patient reported fatigue and related concepts (analysis of variance [ANOVA], P <0.001). PROMIS Fatigue (MS) 8a scores were sensitive to bi-directional changes in fatigue (GHS fatigue global question) and physical health (PROMIS GHS GPH), over a 52-week follow-up. Score changes of 3.4-4 points are proposed as MID criteria for minimal improvement or worsening in fatigue. CONCLUSION: This research extends the evidence supporting the content validity and the robust psychometric performance of the PROMIS Fatigue (MS) 8a across US and UK MS populations. Importantly, data supporting the measure's integration in clinical practice and research, including meaningful score interpretation, are now available.


Subject(s)
Multiple Sclerosis , Cross-Sectional Studies , Fatigue/diagnosis , Fatigue/etiology , Humans , Longitudinal Studies , Multiple Sclerosis/complications , Multiple Sclerosis/diagnosis , Patient Reported Outcome Measures , Psychometrics , Quality of Life , Reproducibility of Results , Surveys and Questionnaires
15.
Arch Phys Med Rehabil ; 102(10): 1959-1964, 2021 10.
Article in English | MEDLINE | ID: mdl-34048792

ABSTRACT

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.


Subject(s)
Multiple Sclerosis, Chronic Progressive/physiopathology , Multiple Sclerosis, Relapsing-Remitting/physiopathology , Pain/physiopathology , Activities of Daily Living , Adult , Cross-Sectional Studies , Female , Humans , Longitudinal Studies , Male , Middle Aged , Pain Measurement , Patient Reported Outcome Measures , Quality of Life , Surveys and Questionnaires
16.
Rehabil Psychol ; 66(2): 224-232, 2021 May.
Article in English | MEDLINE | ID: mdl-33539138

ABSTRACT

Objective: 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. Method: The first study phase involved the development of a web-based symptom self-management program. The second phase involved a single-arm pilot trial (N = 20) of unguided website use for 12 weeks in adults with MS and elevated levels of chronic pain, fatigue, and/or depressed mood. Results: A web-based symptom self-management program, My MS Toolkit, was developed and released for public use in 2019. The results from the pilot trial showed that on average, participants accessed the website 5.4 times, spending about 7 min on the site per visit. Eighty percent rated intervention-related changes in activity limitations, symptoms, emotions, and overall quality of life as either "somewhat" or "moderately" better. Although there were no significant improvements on outcome measures, of those who screened positive for the outcome of interest (i.e., showed a clinically elevated level of that symptom), clinically significant improvement was seen in 37.5% for fatigue, 45.5% for pain, and 40% for depressive symptoms. Conclusions: My MS Toolkit is an accessible, stakeholder-informed, web-based MS symptom self-management program that demonstrated a clinically significant positive impact on symptoms in a proportion of participants. More research is needed to further examine the effects of this program and elucidate who is most likely to benefit from this type of self-guided intervention. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Subject(s)
Multiple Sclerosis , Self-Management , Adult , Fatigue , Humans , Internet , Multiple Sclerosis/complications , Quality of Life
17.
Mult Scler Relat Disord ; 49: 102788, 2021 Apr.
Article in English | MEDLINE | ID: mdl-33508570

ABSTRACT

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.


Subject(s)
COVID-19 Vaccines/administration & dosage , COVID-19/prevention & control , Multiple Sclerosis , Vaccination/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Multiple Sclerosis/epidemiology , Pandemics , United States/epidemiology , Vaccination Refusal/psychology , Young Adult
18.
Rehabil Psychol ; 66(1): 22-30, 2021 Feb.
Article in English | MEDLINE | ID: mdl-32790454

ABSTRACT

OBJECTIVE: Chronic pain is one of the most common and interfering symptoms experienced by people with MS. There is an opportunity to shift the paradigm from interventions delivered after pain has become chronic to early, proactive interventions to alter the impact of MS-related pain. The purpose of this study was to develop and test a remotely delivered single-session group intervention to modify the pain trajectory for individuals with early MS. Research Method/Design: This was a single-center 2-group pilot randomized (1:1) controlled trial comparing a novel videoconference-delivered single-session pain intervention to a waitlist control. Participants were N = 27 adults who were diagnosed with MS in the preceding 36 months and who had moderate or worse pain. The study team developed the intervention to introduce pain coping and commonly used cognitive, behavioral, and acceptance-based approaches for adaptive coping. Participants completed outcome assessments on pain intensity, interference, and coping at pretreatment, posttreatment, and 3-months posttreatment. RESULTS: Among participants in the treatment arm, the majority (54%) indicated satisfaction with treatment and all (100%) indicated continued use of strategies learned in the intervention. The 2 groups did not differ on any of the outcomes at any time point, and large standard deviations were found on most of the measures for both groups at all timepoints. CONCLUSIONS/IMPLICATIONS: This brief, highly accessible intervention targeting pain coping in individuals with early MS is feasible and acceptable. Further research is needed to better understand the effectiveness of the intervention both immediately and in positively impacting future coping in this population. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Subject(s)
Chronic Pain/psychology , Multiple Sclerosis/psychology , Pain Management/methods , Videoconferencing , Adaptation, Psychological , Adult , Depression/epidemiology , Feasibility Studies , Female , Humans , Male , Middle Aged , Pilot Projects , Washington/epidemiology , Young Adult
19.
Arch Phys Med Rehabil ; 102(4): 694-701, 2021 04.
Article in English | MEDLINE | ID: mdl-33080210

ABSTRACT

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.


Subject(s)
Depression , Multiple Sclerosis, Chronic Progressive/psychology , Multiple Sclerosis, Relapsing-Remitting/psychology , Suicidal Ideation , Adult , Aged , Cross-Sectional Studies , Female , Humans , Longitudinal Studies , Male , Middle Aged , Risk Factors , Surveys and Questionnaires
20.
Pain ; 162(5): 1426-1433, 2021 05 01.
Article in English | MEDLINE | ID: mdl-33196577

ABSTRACT

ABSTRACT: 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. Data were collected through a national web-based survey with measures of neuropathic (painDETECT) and nociplastic pain (Fibromyalgia Survey Criteria), chronic overlapping pain conditions, and pain medication use and pain relief. In a sample of N = 842 adults with chronic pain and MS, the largest proportion (41%) showed evidence of nociceptive pain, 27% had mixed neuropathic/nociplastic pain, 23% had nociplastic pain, and 9% had neuropathic pain. Nociplastic pain was associated with significantly higher pain intensity and frequency of chronic overlapping pain conditions. Across all pain types, high frequency of pain medication use along with poor-modest pain relief was reported. Cannabis use for pain was more common, and pain relief ratings were higher among those with nociplastic pain, relative to nociceptive pain. Although NSAID use was highest among those with nociplastic pain (80%), pain relief ratings for NSAIDs were highest among those with nociceptive pain. These findings underscore the need for multidimensional assessment of pain in MS with greater emphasis on the identification of pain phenotype. An improved characterization of pain as a multifaceted condition in MS could inform therapeutic approaches.


Subject(s)
Chronic Pain , Fibromyalgia , Multiple Sclerosis , Neuralgia , Adult , Chronic Pain/drug therapy , Chronic Pain/epidemiology , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/epidemiology , Neuralgia/drug therapy , Neuralgia/epidemiology , Phenotype
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