Patient Determined Disease Steps Research Articles

Information processing speed and disease severity predict real-world ambulation in persons with multiple sclerosis

BackgroundImpairments in real-world gait quality and quantity are multifaceted for individuals with multiple sclerosis (MS), encompassing mobility, cognition, and fear of falling. However, these factors are often examined independently, limiting insights into the combined contributions they make to real-world ambulation. Research questionHow do mobility, cognition, and fear of falling contribute to real-world gait quality and quantity in individuals with MS? MethodsTwenty individuals with MS underwent a series of cognitive assessments, including the Paced Auditory Serial Addition Test (PASAT), Symbol Digits Modalities Test (SDMT), Stroop Test, and the Selective Reminding Test (SRT). Participants also completed the Falls Efficacy Scale – International (FES-I) and walking impairment using the Patient Determined Disease Steps (PDDS). Following the in-lab session, participants wore an inertial sensor on their lower back and asked to go about their typical daily routines for three days. Metrics of gait speed, stride regularity, time spent walking, and total bouts were extracted from the real-world data. ResultsSignificant correlations were found between both real-world gait speed and stride regularity and the SDMT, FES-I, and PDDS. Backward linear regression analysis was conducted for gait speed and stride regularity, with PDDS and SDMT included in the final model for both metrics. These variables explained 63% of the variance in gait speed and 69% of the variance in stride regularity. Results were not significant for gait quantity after adjusting for age and sex. SignificanceThe study's results provide insight regarding the roles of cognition, walking impairment, and fear of falling on real-world ambulation. Deeper understanding of these contributions can inform the development of targeted interventions that aim to improve walking. Additionally, the absence of significant correlations between gait metrics, cognition, and fear of falling with gait quantity underscores the need for further research to identify factors that increased walking in this population.

492 Pain and falls among persons with multiple sclerosis.

OBJECTIVES/GOALS: Falls are very common among persons with multiple sclerosis (PwMS) due to the disabling symptoms associated with the disease. The relationship between pain and falls is underexplored. This study investigated the relationship between the facets of pain (intensity and interference) and falls in the context of co-occurring symptoms of MS. METHODS/STUDY POPULATION: This is a survey-based study that included 915 adults with MS. Participants provided data on demographics, clinical data, concerns about falling, symptom severity, and occurrence of falls in the past 6 months. Participants also completed the Patient Reported Outcome Measurement Information System (PROMIS) pain interference and pain intensity short forms. Pain interference and pain intensity were separately entered into univariate and multivariable logistic regression models developed to examine the associations between falls incidence and pain. Multivariable models were adjusted for age, sex, years since diagnosis, MS type, Patient Determined Disease Steps, MS status, concerns about falling, fatigue severity, PROMIS depression short form, and PROMIS physical function short form. RESULTS/ANTICIPATED RESULTS: Univariate regression analyses indicated that pain interference (OR = 1.05; 95% CI 1.03 to 1.06; p < 0.01) and pain intensity (OR = 1.03; 95% CI 1.02 to 1.04; p < 0.01) were both associated with falls. Only pain interference remained significantly associated with falls in multivariable regression analysis (OR = 1.02; 95% CI 1.00 to 1.05; p = 0.03). The model explained 25% of the variance in falls. Pain intensity was not associated with falls (OR = 0.98; 95% CI 0.95 to 1.01; p > 0.05) in multivariable regression analysis. DISCUSSION/SIGNIFICANCE: The findings suggest that pain is associated with falls among PwMS. Interventions designed to reduce falls incidence among PwMS may consider the inclusion of pain management as an integral component of those programs.

Heart Rate Variability (HRV) serves as an objective correlate of distress and symptom burden in multiple sclerosis

BackgroundAutonomic nervous system (ANS) dysfunction is frequently seen in people living with multiple sclerosis (MS). Heart rate variability (HRV) is an easy and objective index for evaluating ANS functioning, and it has been previously used to explore the association between ANS and the experience of symptom burden in other chronic diseases. Given ANS functioning can be influenced by physical and psychological factors, this study investigated whether emotional distress and/or the presence of ANS dysfunction is associated with symptom severity in people living with MS. MethodsParticipants with MS and healthy controls (HC) with no history of cardiac conditions were recruited to self-collect HR data sampled from a chest strap HR monitor (PolarH10). Short-term HR signal was collected for five minutes, and time and frequency HRV analyses were performed and compared between groups. HRV values were then compared to self-reported distress (Kessler Psychological Distress Scale) and MS participants’ self-reported measures of symptom burden (SymptoMScreen). ResultsA total of n = 23 adults with MS (51 ± 12 years, 65 % female, median Patient Determined Disease Steps [PDDS]: 3.0) and n = 23 HCs (43 ± 18 years, 40 % female) completed the study procedures. All participants were able to complete the chest strap placement and HR data capture independently. Participants with MS, compared to the HC participants, had a significantly lower parasympathetic activation as shown by lower values of the root mean square of successive differences between normal heartbeats (RMSSD: 21.86 ± 9.84 vs. 43.13 ± 20.98 ms, p = 0.002) and of high-frequency (HF) power band (HF-HRV: 32.69 ± 12.01 vs. 42.39 ± 7.96 nu, p = 0.016), indicating an overall lower HRV in the MS group. Among individuals with MS, HF-HRV was significantly correlated with the severity of self-reported MS symptoms (r = -0.548, p = 0.010). Participants with MS also reported higher levels of distress compared to HC participants (18.32 ± 6.05 vs. 15.00 ± 4.61, p = 0.050), and HRV correlated with the severity of distress in MS participants (r = -0.569, p = 0.007). A significant mediation effect was also observed, with emotional distress fully mediating the association between HRV and symptom burden. ConclusionsThese findings suggest the potential for ANS dysfunction, as measured by HRV (i.e., lower value of HF power), to be utilized as an objective marker of symptom burden in people living with MS. Moreover, it is apparent that the relationship between HRV and symptom burden is mediated by emotional distress.

Multiple Sclerosis Multidisciplinary Care: A National Survey and Lessons for the Global Community

BackgroundAccess to, standardization and reimbursement of multidisciplinary care for people with MS (PwMS) is lacking in many countries. Therefore, this study aims to describe the current multidisciplinary care for people with MS (PwMS) in Belgium and identify benefits, needs and future perspectives MethodsA survey for PwMS questioned various aspects of MS and viewpoints on care. For MS nurses (MSN) and neurologists, employment, education, job-content, care organization and perspectives were inquired. Descriptive and univariate statistics were performed ResultsThe PwMS survey comprised 916 respondents with a mean age of 46±12.7 years and 75,4 % of the respondents being female. The majority of the participants had relapsing remitting MS (60.8 %) and the mean patient determined disease steps (PDDS) was 2.0 (IQR=3). 65.3 % and 60.4 % of the PwMS reported having access to a multidisciplinary team (MDT) or MSN. Access to an MSN was associated with more frequent disease modifying treatment (p=.015), spasticity (p=.042) and gait treatment (p=.035), but also more physiotherapy (p=.004), driver's license adjustment (p<.001) and a higher employment rate (p=.004). MDT access was associated with more frequent symptomatic bladder treatment (p=.047), higher physiotherapy rate (p<.001), higher work- (p=.002), insurance- (p<.001) and home support measures (p=.019). PwMS without an available MDT more often indicated that MS care needs improvement (p<.001). MSN's (n = 22) were mainly funded through various budgets, including hospital and neurology practice budgets. Finally, 69 % and 75 % neurologists (n = 62) working without an MSN or MDT stated a need of such support and 61 % agreed that MDT's should be organized at hospital-network level ConclusionMDT and MSN availability may enhance medical and socio-economic support for PwMS. Guidelines, alignment and reimbursement are needed.

Blood Flow Restriction and Veterans with Multiple Sclerosis (BRaVe-MS) and Advanced Disability: Protocol for a Randomized Controlled Trial.

The purpose of this study will be to determine the efficacy of low intensity lower extremity resistance training with and without blood flow restriction on quadriceps muscle strength and thickness in veterans with advanced multiple sclerosis (MS). This will be an assessor-blinded, 2-group (1 to 1 allocation) randomized controlled trial targeting an enrollment of 58 participants with advanced MS as defined by Patient-Determined Disease Steps scale levels 4 to 7. Both groups will complete 10weeks of twice weekly low-load resistance training (20% to 30% of 1-repetition max) targeting knee and hip extension, knee flexion, and ankle plantarflexion. The intervention group will perform all training using blood flow restriction, with limb occlusion pressures between 60% to 80% of maximal limb occlusion pressure. Primary outcomes will be quadriceps muscle strength and thickness. Secondary outcomes will include knee flexion and ankle plantarflexion strength, functional mobility, physical activity, and patient-reported measures. All outcomes will be assessed at baseline before the intervention, immediately after the intervention, and at a 2-month follow-up assessment. The change between groups post-intervention and after the 2-month follow-up will be reported for all outcomes. All analyses will assume a 2-sided test of hypothesis (α= .05). There is very little evidence for the efficacy of exercise interventions in people with MS who have advanced mobility disability. Resistance training with blood flow restriction may be an important approach for people with advanced MS who may not tolerate more conventional, moderate-to-high intensity resistance training. The results of this study will inform clinicians regarding exercise decisions for people with advanced MS and future investigations on the role of blood flow restriction in people with MS.

Hippocampal subfields and thalamic nuclei associations with clinical outcomes in multiple sclerosis: An ultrahigh field MRI study

BackgroundPrevious studies have shown that thalamic and hippocampal neurodegeneration is associated with clinical decline in Multiple Sclerosis (MS). However, contributions of the specific thalamic nuclei and hippocampal subfields require further examination. ObjectiveUsing 7 Tesla (7T) magnetic resonance imaging (MRI), we investigated the cross-sectional associations between functionally grouped thalamic nuclei and hippocampal subfields volumes and T1 relaxation times (T1-RT) and subsequent clinical outcomes in MS. MethodsHigh-resolution T1-weighted and T2-weighted images were acquired at 7T (n=31), preprocessed, and segmented using the Thalamus Optimized Multi Atlas Segmentation (THOMAS, for thalamic nuclei) and the Automatic Segmentation of Hippocampal Subfields (ASHS, for hippocampal subfields) packages. We calculated Pearson correlations between hippocampal subfields and thalamic nuclei volumes and T1-RT and subsequent multi-modal rater-determined and patient-reported clinical outcomes (∼2.5 years after imaging acquisition), correcting for confounders and multiple tests. ResultsSmaller volume bilaterally in the anterior thalamus region correlated with worse performance in gait function, as measured by the Patient Determined Disease Steps (PDDS). Additionally, larger volume in most functional groups of thalamic nuclei correlated with better visual information processing and cognitive function, as measured by the Symbol Digit Modalities Test (SDMT). In bilateral medial and left posterior thalamic regions, there was an inverse association between volumes and T1-RT, potentially indicating higher tissue degeneration in these regions. We also observed marginal associations between the right hippocampal subfields (both volumes and T1-RT) and subsequent clinical outcomes, though they did not survive correction for multiple testing. ConclusionUltrahigh field MRI identified markers of structural damage in the thalamic nuclei associated with subsequently worse clinical outcomes in individuals with MS. Longitudinal studies will enable better understanding of the role of microstructural integrity in these brain regions in influencing MS outcomes.

Predicting physical activity for people with multiple sclerosis: The role of exercise-related cognitive errors.

Multiple sclerosis (MS) is a neurological disease that is chronic, progressive characterized by symptoms of relapsing fatigue and pain. Despite evidence supporting the use of physical activity (PA) for MS symptom management, low rates of PA participation are observed. Previous research suggests exercise-related cognitive errors (ECEs) can deter and decrease PA participation. The purpose of this study was to examine whether ECEs and self-regulatory efficacy for MS symptom control predict important behavior-related outcomes for MS self-management (dependent variables: PA, maladaptive behavioral responses to illness, and perceived walking impairment). Adults with MS (N = 110; aged 18 and over, with a patient-determined disease steps score of six or less) completed the following validated questionnaires: ECEs, MS symptom control self-efficacy, self-report moderate to vigorous physical activity, behavioral responses to illness, and perceived walking impairment. ECEs significantly predicted behavioral responses to illness (β = .459, p < .01) and perceived walking impairment (β = .279, p < .01). The interaction between ECEs and self-regulatory efficacy significantly predicted all three dependent variables (βs ranged from .155 to .263, ps < .05). This is the first study to demonstrate associations between ECEs and different illness- and mobility-related perceptions for persons with MS. Findings suggested that self-regulatory efficacy to manage MS symptoms varied based on low, moderate, or high levels of ECEs. Disability status is not easily modifiable; targeting social cognitions, like self-regulatory efficacy or ECEs, may be a promising way to promote PA for MS self-management. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Association between demographics, socioeconomics, and disease-related factors and the perception of stigma in people with MS.

Stigma is prevalent among individuals with chronic diseases, such as multiple sclerosis (MS) and those with comorbid mental health disorders, but its associated factors are poorly understood. To investigate the prevalence and correlates of stigma in people living with MS. We analyzed data from the MS Partners Advancing Technology and Health Solutions (MS PATHS) network, which collected patient information and outcomes during routine clinic visits. We used a multinomial logistic regression model to examine the cross-sectional association between stigma and demographic, socioeconomics, and MS-related factors. We included 11,634 participants. The mean Neuro-QoL stigma T-score was 47.2 ± 8.6, and 17.7% of participants were classified as having moderate to severe stigma using established cutoffs. Multinomial logistic regression models suggest that higher disability levels, progressive form of the disease, shorter duration of the disease, and unemployment were associated with higher stigma while being male, married, undergoing treatment with high-efficacy disease-modifying therapies (DMTs), and being from European MS centers were associated with lower stigma perception. Disability levels, measured by Patient-Determined Disease Steps (PDDS), had the strongest independent association with stigma. Stigma remains a relevant issue for people living with MS. Factors, such as physical and cognitive disability, DMT, and employment status may influence the severity of perceived stigma.

Social Cognitive Theory Variables as Correlates of Physical Activity Behavior Among Hispanics With Multiple Sclerosis

ObjectiveTo examine the association between social cognitive theory (SCT) variables and physical activity (PA) behavior in Hispanic adults with multiple sclerosis (MS). DesignObservational, survey study. SettingGeneral community. ParticipantsInclusion criteria: (a) age 18 years or older, (b) self-identify as Hispanic or Latino, (c) diagnosis of MS, and (d) English or Spanish as primary language. Two hundred forty-three individuals opened the survey, 24 individuals did not meet inclusion criteria, and 66 individuals were excluded due to not completing any of the SCT variable measures (N=153). InterventionsNot applicable. Main Outcome Measure(s)PA was measured using the Godin Leisure Time Exercise Questionnaire (GLTEQ) total and Health Contribution Scores (HCS). SCT variables included standard measures of exercise self-efficacy, planning, goal setting, outcome expectations, social support, and functional impairment. ResultsThe final sample included 153 participants with a mean (SD) age of 43 (11) years, 78% identified as women, 57% were employed, and 63% had a college degree or higher. The mean (SD) MS disease duration was 11 (9) years, 74% of participants reported relapsing remitting MS, and median (interquartile range) Patient Determined Disease Steps (PDDS) score was 3.0 (3.0). Significant correlations were observed between all SCT variables and both GLTEQ total and GLTEQ HCS scores (P<.001). Forward stepwise regression with Akaike's Information Criterion (AICC) identified PDDS, age, exercise planning, exercise self-efficacy, and exercise goal setting as the most appropriate covariates and SCT variables to include in a multivariable model examining independent contributions on GLTEQ HCS scores. The multivariable, linear regression analysis indicated that PDDS (Standardized B=-.280, P<.001), exercise planning (Standardized B=.214, P<.05), and exercise self-efficacy (Standardized B=.183, P<.05) explained 42.4% of variance in GLTEQ HCS scores. ConclusionsThis study provides a contribution to the literature by identifying SCT variables that correlate with PA behavior among Hispanics with MS that may guide the creation of culturally appropriate PA programs.

Physical activity together for MS (PAT-MS): Secondary outcomes of a randomized controlled feasibility trial

BackgroundCare partners provide essential care to those with multiple sclerosis (MS). Dyadic interventions promoting health behaviours have wide-reaching benefits for individuals with MS and their care partners. However, behavioural interventions to promote physical activity in patient-caregiver dyads have yet to be explored in an MS-specific context. This study examined the secondary outcomes of the “Physical Activity Together for Multiple Sclerosis (PAT-MS)” intervention, including dyadic adjustment, caregiving tasks, caregiver quality of life, coping, and MS impact in MS dyads. MethodsA randomized controlled feasibility trial of the 12-week behavioural PAT-MS intervention. The Dyadic Adjustment Scale, Caregiving Tasks in MS Scale, Caregiver Quality of Life in MS Scale, Coping with MS Caregiving Inventory, and MS Impact Scale measured secondary outcomes of interest. Mixed-model ANOVAs were used to test changes in variables between groups (PAT-MS vs wait-list control) over time. Results20 participants, including 10 people with MS (51.4 ± 10.1 years old; median patient-determined disease steps (PDDS) score= 4, IQR= 1.25) and 10 care partners (48.5 ± 12.1 years old) were recruited and randomized. There was no statistically significant effect of the intervention on any of the secondary outcomes (p= 0.67–1.00). However, large effect sizes and condition-by-time interaction effects indicated improvement in dyadic adjustment (d= 1.03, ηp2= 0.45), the criticism-coercion coping subscale (d= -0.93, ηp2= 0.49), and caregiving tasks (d= 1.05, ηp2= 0.52), specifically within psycho-emotional (d= 1.47, ηp2= 0.38) and socio-practical (d= 1.10, ηp2 =0.37) sub-domains of caregiving tasks after the PAT-MS intervention compared to the wait-list condition. ConclusionWhile this pilot feasibility study was not powered based on the secondary outcomes herein, our findings indicate improvement in dyadic adjustment and emotional and social caregiving tasks, with reduced reliance on criticism-coercion coping in the PAT-MS group compared to controls following the intervention. Findings indicate that PAT-MS may improve dyadic psychosocial well-being of people with moderate-to-severe MS and their care partners, and this should be examined next in a fully-powered study.

Task-oriented exercise effects on walking and corticospinal excitability in multiple sclerosis: protocol for a randomized controlled trial

BackgroundMultiple sclerosis (MS) is a degenerative disease of the central nervous system (CNS) that disrupts walking function and results in other debilitating symptoms. This study compares the effects of ‘task-oriented exercise’ against ‘generalized resistance and aerobic exercise’ and a ‘stretching control’ on walking and CNS function in people with MS (PwMS). We hypothesize that task-oriented exercise will enhance walking speed and related neural changes to a greater extent than other exercise approaches.MethodsThis study is a single-blinded, three-arm randomized controlled trial conducted in Saskatchewan, Canada. Eligible participants are those older than 18 years of age with a diagnosis of MS and an expanded Patient-Determined Disease Steps (PDDS) score between 3 (‘gait disability’) and 6 (‘bilateral support’). Exercise interventions are delivered for 12 weeks (3 × 60-min per week) in-person under the supervision of a qualified exercise professional. Interventions differ in exercise approach, such that task-oriented exercise involves weight-bearing, walking-specific activities, while generalized resistance and aerobic exercise uses seated machine-based resistance training of major upper and lower body muscle groups and recumbent cycling, and the stretching control exercise involves seated flexibility and relaxation activities. Participants are allocated to interventions using blocked randomization that stratifies by PDDS (mild: 3–4; moderate: 5–6). Assessments are conducted at baseline, post-intervention, and at a six-week retention time point. The primary and secondary outcome measures are the Timed 25-Foot Walk Test and corticospinal excitability for the tibialis anterior muscles determined using transcranial magnetic stimulation (TMS), respectively. Tertiary outcomes include assessments of balance, additional TMS measures, blood biomarkers of neural health and inflammation, and measures of cardiorespiratory and musculoskeletal fitness.DiscussionA paradigm shift in MS healthcare towards the use of “exercise as medicine” was recently proposed to improve outcomes and alleviate the economic burden of MS. Findings will support this shift by informing the development of specialized exercise programming that targets walking and changes in corticospinal excitability in PwMS.Trial registrationClinicalTrials.gov, NCT05496881, Registered August 11, 2022. https://classic.clinicaltrials.gov/ct2/show/NCT05496881. Protocol amendment number: 01; Issue date: August 1, 2023; Primary reason for amendment: Expand eligibility to include people with all forms of MS rather than progressive forms of MS only.

Initial validation of the university of Alabama Birmingham study of aging life-space assessment in older adults with multiple sclerosis

BackgroundOlder adults with multiple sclerosis (OAMS) have declines in walking and physical performance that may erode community mobility defined as the spatial extent of mobility in one's daily life and environment. ObjectiveThis study provided the first application and validation of the University of Alabama Birmingham Study of Aging Life-Space Assessment (UAB LSA) as a measure of community mobility in OAMS. MethodsThe sample included 97 OAMS and 108 healthy controls (HCs) who completed baseline assessments as part of an ongoing, longitudinal study. The primary assessments included the UAB LSA and timed 25-foot walk (T25FW), short physical performance battery (SPPB), global health score (GHS), and geriatric depression scale (GDS) in both OAMS and HCs, and patient determined disease steps (PDDS) scale in only OAMS. ResultsOAMS had significantly lower UAB LSA scores than HCs (p < .001). UAB LSA scores had strong correlations with T25FW(rs = –.641) and SPPB(rs = 0.507) in OAMS, and moderate correlations in HCs (rs = –.300 & rs = 0.384). The correlations between UAB LSA and GHS and GDS scores were significant, but small in OAMS (rs = –.239 & rs = –.231), and not statistically significant in HCs (rs = –.009 & rs = –.166). There was a strong correlation between UAB LSA and PDDS scores in the OAMS sample (rs = –.605). ConclusionWe provided initial evidence for UAB LSA scores as a measure of community mobility in OAMS.

Association between frailty and sleep quality in people living with multiple sclerosis and obesity: An observational cross-sectional study

BackgroundA majority of the people with multiple sclerosis (pwMS) experience sleep disturbances. Frailty is also common in pwMS. The geriatric literature strongly suggests that frailty is associated with worse sleep outcomes in community-dwelling older adults, but this association has yet to be explored among pwMS. This study focused on examining the association between frailty and sleep quality in pwMS. MethodsSeventy-six people with both MS and obesity (mean age: 47.6 ± 10.9 years, 81.6 % female, mean body mass index (BMI): 37.10 ± 5.5 kg/m2, mean Patient Determined Disease Steps (PDDS): 0.82 ± 1.20) were included in this cross-sectional secondary analysis. A comprehensive frailty index (FI) based on 41 health deficits from various health domains was calculated based on standardized procedures. Sleep quality was determined by the Pittsburgh Sleep Quality Index questionnaire (PSQI). ResultsOverall, 67.1 % of the participants were identified as non-frail (FI ≤ 0.25), and 32.9 % were identified as frail (FI > 0.25). A significant correlation was observed between FI scores and global PSQI scores (ρ = 0.43, p < 0.05). Cross-tabulation analyses revealed that frail participants had worse subjective sleep quality, sleep latency, habitual sleep efficiency, sleep disturbances, daytime dysfunction, and higher use of sleep medications compared to non-frail participants (p < 0.05). ConclusionsThe current study identified a significant association between frailty and sleep quality in people with both MS and obesity with minimal disability. These findings underscore the importance of untangling the relationship between frailty and sleep quality in pwMS. These results could lead to a more targeted approach for rehabilitation interventions aiming to improve frailty in MS.

Performance of an Arabic translation of the patient determined disease steps (PDDS) scale in Saudi patients with multiple sclerosis.

The Expanded Disability Status Scale (EDSS) is commonly used to measure and quantify disabilities in patients with multiple sclerosis (MS). The patient-determined disease steps (PDDS) scale is a patient-reported measure of disability that is useful in MS. However, the Arabic version of the PDDS has only been tested in Jordanian patients. Although both populations share similar Arabic languages, it is plausible that differences in dialects and educational systems could alter the generalizability of the tool. In this prospective study, patients with MS were asked to complete a printed translated version of the (PDDS), and the results were compared to their EDSS scores, functional system scores, and walking speed measures. Patients with relapsing or progressive MS were included in the study. Spearman rho rank-order correlation coefficients (P) were used to measure the correlation between the PDDS and other variables. We considered previously reported P values > .1, .3, and .5 as small, moderate, and strong correlations, respectively. A total of 79 patients completed the study. The PDDS showed a strong correlation with the EDSS (P = .69, 95% confidence interval 0.55-0.79, P < .001). PDDS is associated with cerebellar, pyramidal, and bladder dysfunctions. It was also moderately correlated with the timed-25-foot walk test and timed-up-and-go test. The Arabic version of the PDDS performed similarly to English and other languages when tested on a cohort of patients with MS.

Age-related differences in the severity of sexual dysfunction symptoms and psychological distress in individuals with multiple sclerosis.

Sexual dysfunction (SD) is a common symptom for many with multiple sclerosis (MS). However, SD research in general appears to often overlook young adults within their samples, which can be a major issue for better understanding and treatment for the MS population. Few studies have compared age-related differences in distress in response to physical disability. Research has also found that many people diagnosed with MS do not discuss any SD struggles with their providers. The present study hopes to see whether age-related differences exist in the reporting of the levels of primary, secondary, and tertiary SD, as defined by subscale scores of the Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19), and amount of distress, as defined by the 12-Item Short Form Health Survey (SF-12)'s Mental Component Summary (MCS-12). Additionally, we hope to determine if there are any age-related or sex-related differences in help-seeking behaviors for SD. Study participants were recruited from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Participants completed the MSISQ-19, SF-12, and Patient Determined Disease Steps (PDDS), provided demographic information, and responded if they received medical or psychological treatment for SD. Study participants were 5815 respondents (Mage=51 years, SD=9.63, 75% female, 30% having attained a high school diploma, 35% scoring "advanced disability" on the PDDS). Young adult (19-39 years), middle adult (40-64 years), and mature adult (65-older) were compared on SD. Linear mixed effects modeling revealed that the MSISQ-19 subscale scores were significantly predicted by secondary SD (t=2.48, p<.13). Young adult participants had the lowest primary SD (M=13.87, 95% CI [13.13, 14.61]) when compared to mature adult (M=14.12, 95% CI [13.27, 14.97]) and middle adult participants (M=14.44, 95% CI [14.21, 14.66]), though none were statistically significant. Mature adults had the lowest secondary SD (M=16.50, 95% CI [15.65, 17.35]), a statistically significant difference from the middle adults (M=18.20, 95% CI [17.97, 18.42]) and young adults (M=18.91, 95% CI [18.17, 19.65]). Mature adults had the lowest tertiary symptoms (M=10.12, 95% CI [9.27, 10.96]), followed by young adults (M=12.23, 95% CI [11.48, 12.97]), and middle adults (M=11.65, 95% CI [11.43, 11.88]), though none were statistically significant. Hierarchical multiple regressions found that age had the most significant impact on SD. When SF-12 MCS-12 was added, linear mixed effects did not reveal any statistically significant results between the age groups and SD levels. In contrast, hierarchical multiple regressions found that SF-12 MCS-12 scores had the most significant impact on SD. There were significant age-related and sex-related differences in help-seeking behaviors in those who sought psychological counseling as opposed to medical treatment for SD. Our study has highlighted the importance of clinicians assessing for SD and psychological distress within their patients and to consider potential differences in symptom presentations of age groups to better address their unique needs.

Body metrics are associated with clinical, free-living, and self-report measures of mobility in a cohort of adults with obesity and multiple sclerosis.

Obesity is associated with multiple sclerosis (MS) onset and may contribute to more rapid disability accumulation. Whether obesity impacts mobility in MS is uncertain. Some studies find that obesity in MS is associated with poorer mobility; other studies find no relationship. Discrepant findings may be due to differences in measurement and methodology. In the present study, we employ a comprehensive battery of anthropometric and mobility measures in a sample of people with MS and obesity. Participants with MS (N=74) completed a battery of adiposity measurements (weight, height, waist circumference, and full body dual-energy x-ray absorptiometry [DXA] scans). They also completed validated clinical, free-living (accelerometry), and self-report measures of mobility. Spearman's Rho correlations were used to examine the associations between mobility and obesity measures with Benjamini and Hochberg correction for multiple comparisons. Multiple linear regression was used to examine if adiposity predicted mobility outcomes in people with MS when controlling for age and disease duration. The majority of participants (n=70) were diagnosed with relapsing-remitting MS and reported mild MS-related disability on the Patient Determined Disease Steps (M=0.77, SD=1.1). Median BMI was 35.8 (SD=5.4). Higher percentage body fat (measured via DXA) was associated with poorer self-reported physical functioning (rs=-0.52, p <0.001), less moderate-to-vigorous physical activity (rs=-0.24, p=0.04), and worse performance on the Six Minute Walk Test (6MWT; rs=-0.44, p <0.001), the Timed 25 Foot Walk (T25FW; rs=0.45, p <0.001), and the Timed Up and Go test (TUG; rs=0.35, p=.003). Higher BMI and waist-to-height ratio (WtHR) were associated with worse outcomes on the 6MWT (BMI; rs=-0.35, p <0.01, WtHR; rs=-0.43, p <0.001), T25FW (BMI; rs=0.32, p <0.01, WtHR; rs=0.38, p <0.001), and the SF-36 (BMI; rs=-0.29, p <0.005, WtHR; rs=-0.31, p <0.05). Percentage body fat accounted for an additional 17% of the variance in the T25FW and 6MWT performance, after controlling for age and disease duration. Higher BMI, WtHR, and percentage body fat were associated with lower levels of mobility (T25FW and 6MWT) in people with MS who have class I, class II, and class III obesity. Higher percentage body fat was associated with significantly worse performance on clinical, free-living, and self-report measures of mobility in people with MS even when accounting for participant age and disease duration. These findings suggest that people with MS and obesity may show improved mobility with weight loss.

Association between serum multi-protein biomarker profile and real-world disability in multiple sclerosis.

Few studies examined blood biomarkers informative of patient-reported outcome (PRO) of disability in people with multiple sclerosis (MS). We examined the associations between serum multi-protein biomarker profiles and patient-reported MS disability. In this cross-sectional study (2017-2020), adults with diagnosis of MS (or precursors) from two independent clinic-based cohorts were divided into a training and test set. For predictors, we examined seven clinical factors (age at sample collection, sex, race/ethnicity, disease subtype, disease duration, disease-modifying therapy [DMT], and time interval between sample collection and closest PRO assessment) and 19 serum protein biomarkers potentially associated with MS disease activity endpoints identified from prior studies. We trained machine learning (ML) models (Least Absolute Shrinkage and Selection Operator regression [LASSO], Random Forest, Extreme Gradient Boosting, Support Vector Machines, stacking ensemble learning, and stacking classification) for predicting Patient Determined Disease Steps (PDDS) score as the primary endpoint and reported model performance using the held-out test set. The study included 431 participants (mean age 49 years, 81% women, 94% non-Hispanic White). For binary PDDS score, combined feature input of routine clinical factors and the 19 proteins consistently outperformed base models (comprising clinical features alone or clinical features plus one single protein at a time) in predicting severe (PDDS ≥ 4) versus mild/moderate (PDDS < 4) disability across multiple machine learning approaches, with LASSO achieving the best area under the curve (AUCPDDS = 0.91) and other metrics. For ordinal PDDS score, LASSO model comprising combined clinical factors and 19 proteins as feature input (R2PDDS = 0.31) again outperformed base models. The two best-performing LASSO models (i.e., binary and ordinal PDDS score) shared six clinical features (age, sex, race/ethnicity, disease subtype, disease duration, DMT efficacy) and nine proteins (cluster of differentiation 6, CUB-domain-containing protein 1, contactin-2, interleukin-12 subunit-beta, neurofilament light chain [NfL], protogenin, serpin family A member 9, tumor necrosis factor superfamily member 13B, versican). By comparison, LASSO models with clinical features plus one single protein at a time as feature input did not select either NfL or glial fibrillary acidic protein (GFAP) as a final feature. Forcing either NfL or GFAP as a single protein feature into models did not improve performance beyond clinical features alone. Stacking classification model using five functional pathways to represent multiple proteins as meta-features implicated those involved in neuroaxonal integrity as significant contributors to predictive performance. Thus, serum multi-protein biomarker profiles improve the prediction of real-world MS disability status beyond clinical profile alone or clinical profile plus single protein biomarker, reaching clinically actionable performance.

Using qualitative free-text data to investigate the lived experience of the COVID-19 pandemic for a large cohort of Australians with different multiple sclerosis related disability levels

BackgroundNo large-scale qualitative studies have investigated the lived experience of people living with multiple sclerosis (PwMS) during the pandemic according to their disability level. We used qualitative research methods to...

Preliminary race-ethnicity-based analyses of fall risk among people with multiple sclerosis.

Mounting evidence suggests differences in the disease characteristics of multiple sclerosis (MS) across ethnic and racial groups. Although it is widely recognized that falls are a significant concern for people with MS (PwMS), no study has explored if the fall risk is related to race/ethnicity in PwMS. The primary purpose of this pilot study was to examine whether the risk of falls is different between age-matched White, Black, and Latinx PwMS. Fifteen White, 16 Black, and 22 Latinx, age-matched ambulatory PwMS were selected from previous studies. Demographic and disease information, the fall risk (annual fall prevalence, proportion of recurrent fallers, and the number of falls) in the preceding year, and a battery of fall risk factors (including the disability level, gait speed, and cognition) were compared between race/ethnicity groups. The fall history was gathered using the valid fall questionnaire. The disability level was assessed by the Patient Determined Disease Steps score. Gait speed was measured using the Timed 25-Foot Walk test. The short Blessed Orientation-Memory-Concentration test evaluates participants' cognitive function. SPSS 28.0 was used for all statistical analyses and a significance level of 0.05 was applied. Among the demographic measurements, age (p=0.052), sex (p=0.17), body mass (p=0.338), age at diagnosis (p=0.623), and disease duration (p=0.280) were comparable across groups while the body height was significantly different between racial groups (p < 0.001). Binary logistic regression analysis did not detect a significant relationship between the faller status and racial/ethnic group (p=0.571) after controlling the body height and age. Similarly, the recurrent faller status was not associated with our participants' race/ethnicity (p=0.519). There was no difference in the number of falls in the past year between racial groups (p=0.477). The fall risk factors of disability level (p=0.931) and gait speed (p=0.252) were similar among the groups. However, the White group had a significantly better Blessed Orientation-Memory-Concentration score than the Black (p=0.037) and Latinx (p=0.036) groups. No significant difference in the Blessed Orientation-Memory-Concentration score was observed between the Black and Latinx groups (p=0.857). As the initial attempt, our preliminary study suggests that the annual risk of being a faller or recurrent faller may not be affected by PwMS' race/ethnicity. Similarly, the physical functions (quantified by the Patient Determined Disease Steps and the gait speed) are comparable between racial/ethnic groups. However, the cognitive function may differ among age-matched racial groups of PwMS. Given the small sample size, caution is warranted when interpreting our findings. Despite the limitations, our study provides pilot knowledge about how race/ethnicity affects the fall risk in PwMS. Due to the limited sample size, it is too soon to definitively conclude that race/ethnicity has ignorable impacts on fall risk in PwMS. Further studies with larger sample sizes and more fall risk metrics are needed to clarify the effects of race/ethnicity on fall risk in this population.

The Patient-Determined Disease Steps scale is not interchangeable with the Expanded Disease Status Scale in mild to moderate multiple sclerosis.

The validity, reliability, and longitudinal performance of the Patient-Determined Disease Steps (PDDS) scale is unknown in people with multiple sclerosis (MS) with mild to moderate disability. We aimed to examine the psychometric properties and longitudinal performance of the PDDS. We included relapsing-remitting MS patients with an Expanded Disability Status Scale (EDSS) score of less than 4. Validity and test-retest reliability was examined. Longitudinal data were analysed with mixed-effect modelling and Cohen's kappa for concordance in confirmed disability progression (CDP). We recruited a total of 1093 participants, of whom 904 had complete baseline data. The baseline correlation between PDDS and EDSS was weak (ρ = 0.45, p < 0.001). PDDS had stronger correlations with patient-reported outcomes (PROs). Conversely, EDSS had stronger correlations with age, disease duration, Kurtzke's functional systems and processing speed test. PDDS test-retest reliability was good to excellent (concordance correlation coefficient = 0.73-0.89). Longitudinally, PDDS was associated with EDSS, age and depression. A higher EDSS score was associated with greater PDSS progression. The magnitude of these associations was small. There was no concordance in CDP as assessed by PDDS and EDSS. The PDDS has greater correlation with other PROs but less correlation with other MS-related outcome measures compared to the EDSS. There was little correlation between PDDS and EDSS longitudinally. Our findings suggest that the PDDS scale is not interchangeable with the EDSS.