Perceived health- related quality of life in persons with multiple sclerosis with and without a vascular comorbidity.

PURPOSE: Vascular comorbidities are prevalent and can contribute to adverse health outcomes in persons with multiple sclerosis (PwMS). Understanding the association between vascular comorbidities and health-related quality of life (HRQOL) among PwMS may be beneficial in improving outcomes and disease management. This cross-sectional study aimed to examine the relationship between vascular comorbidities and the different dimensions of HRQOL in PwMS. METHODS: Participants (n = 185) were PwMS recruited from a community-based comprehensive MS care center. Demographics, comorbid conditions, and disability level were collected via a self-report REDCap survey, with the 29-item Multiple Sclerosis Quality of Life (MSQOL-29) as the outcome measure. Regression models were used to examine the association between vascular comorbidities and the MSQOL-29, controlling for age, gender, ethnicity, level of education, marital status, MS subtype, disease duration, and disability. RESULTS: Approximately 35% reported at least one vascular comorbidity, with the most common being hypertension (27.0%), followed by hyperlipidemia (24.9%) and diabetes (8.1%). After factoring in for demographics and disability, having a vascular comorbidity was associated with lower physical HRQOL (ß = - 10.05, 95% CI: - 28.24, 23.50), but not mental HRQOL (ß = - 2.61, 95% CI: - 10.54, 5.32). Hypertension was negatively associated with several dimensions of HRQOL, including Physical Function, Change in Health, Health Perceptions, Energy, and Health Distress. CONCLUSIONS:  Having at least one vascular comorbidity is associated with lower physical HRQOL, independent of demographics and level of physical disability. Focus should be directed to the physical burden and challenges vascular comorbidities may cause on the lives of PwMS.

The association between sleep disorders and resilience in persons with multiple sclerosis.

While lower resilience has been connected to self-reported sleep problems in persons with multiple sclerosis (PwMS), there has yet to be an examination with diagnosed sleep disorders. This study examined differences in resilience (MS Resiliency Scale) between PwMS with sleep disorders (n = 27), sleep problems (n = 39), and no sleep disorders/problems (n = 46). PwMS with sleep disorders had significantly lower resilience than PwMS with no sleep disorders/problems (p = .035), with support from family and friends driving this difference. These findings further illustrate the connection between sleep and resilience in PwMS, highlighting the importance of social support in this relationship.

Physical Activity and Life Stress Are Associated With Illness Intrusiveness in Persons With Multiple Sclerosis.

OBJECTIVES: To explore which modifiable lifestyle behaviors contribute to illness intrusiveness in persons with multiple sclerosis (MS). DESIGN: Cohort study. SETTING: Community-based comprehensive MS center. PARTICIPANTS: Adults with MS (N=154) who completed an online battery of self-report questionnaires. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Illness intrusiveness was measured with the 13-item Illness Intrusiveness Ratings Scale. Lifestyle behaviors were measured using the respective components of the Simple Lifestyle Indicator Questionnaire (ie, Diet, Physical Activity, Alcohol, Smoking, and Life Stress) and self-reported body mass index (BMI). RESULTS: After controlling for age, race, sex, disease duration, and level of physical disability ("disability"), life stress was associated with greater illness intrusiveness (b=4.65, P<.001), and physical activity was associated with less illness intrusiveness (b=-0.67, P=.009). Exploratory mediation analyses revealed physical activity had an indirect effect on illness intrusiveness through disability (b=-0.39, 95% CI: -0.68, -0.16). Conversely, disability also displayed an indirect effect on illness intrusiveness through physical activity (b=0.57, 95% CI: 0.12, 1.16). CONCLUSIONS: Life stress and physical activity are 2 modifiable lifestyle behaviors that contribute to illness intrusiveness, with the latter also having an indirect effect through disability. These findings may help inform future behavioral interventions for improving health-related quality of life in persons with MS.

Using participatory action research to develop a new self-management program: Results from the design stage of Managing My MS My Way.

BACKGROUND: Self-management programs have been used with success in several clinical populations, and there is a growing body of evidence to support their use among persons with multiple sclerosis (MS). This group aimed to develop a novel self-management program, Managing My MS My Way (M4W), which is based in social cognitive theory and contains evidence-based strategies that have been shown to be effective for persons with MS. Furthermore, persons with MS would serve as stakeholders throughout the development process to ensure that the program would be useful and encourage adoption. This paper outlines the initial development stages of M4W, including determining 1) stakeholders' interest in a self-management program, 2) the general focus of the program, 3) the delivery method of the program, 4) the content of the program, and 5) potential barriers and adaptations. METHODS: A three-stage study consisting of an anonymous survey (n = 187) to determine interest, topic, and delivery format; semi-structured interviews (n = 6) to follow-up on the survey results; and semi-structured interviews (n = 10) to refine the content and identify barriers. RESULTS: Over 80% of survey participants were somewhat or very interested in a self-management program. Fatigue was the topic with the greatest amount of interest (64.7%). An internet-based program (e.g., mobile health or mHealth) was the most preferred delivery method (37.4%), with the first group of stakeholders proposing a module-based system with an initial in-person orientation session. The second group of stakeholders were overall enthusiastic about the program, giving moderate to high confidence scores for each of the proposed interventional strategies. Suggestions included skipping sections that were not applicable to them, setting reminders, and seeing their progress (e.g., visualizing their fatigue scores as they move through the program). In addition, stakeholders recommended larger font sizes and speech-to-text entry. CONCLUSIONS: Input from the stakeholders has been incorporated into the prototype of M4W. The next steps will be to test this prototype with another group of stakeholders to assess its initial usability and identify issues before developing the functional prototype.

Effect of Backward and Forward Walking on Lower Limb Strength, Balance, and Gait in Multiple Sclerosis: A Randomized Feasibility Trial.

BACKGROUND: Backward walking (BW) interventions have improved gait and balance in persons with stroke, cerebral palsy, and Parkinson disease but have not been studied in persons with multiple sclerosis (MS). We examined the feasibility of a BW intervention and how it affected strength, balance, and gait vs forward walking (FW) in persons with MS. METHODS: Sixteen persons with MS with a Patient-Determined Disease Steps (PDDS) scale score of 3 to 5 (gait impairment-late cane) were randomized to the FW (n = 8) or BW (n = 8) group. Participants did 30 minutes of FW or BW on a treadmill 3 times per week for 8 weeks (24 visits). Enrollment, adherence rate, and safety were tracked. The Timed Up and Go test, Six-Spot Step Test, single-leg stance, and abbreviated Activities-specific Balance Confidence scale were used to measure balance. Hip and knee flexion and extension strength (isometric peak torque), gait speed, and spatiotemporal gait parameters were measured. A 2×2 factorial multivariate analysis of covariance was used to examine changes in strength, balance, and gait, with the PDDS scale score as the covariate. RESULTS: Treatment adherence rate was 99.7%, with no safety concerns. After controlling for baseline differences in disability (PDDS scale score; P = .041), the BW group improved dominant hip flexion strength preintervention to postintervention compared with the FW group (F 1,13 = 9.03; P = .010). No other significant differences were seen between groups. CONCLUSIONS: This was the first study to look at BW as an intervention in persons with MS. Based on its feasibility, safety, and significant finding, BW should be studied in a larger, definitive trial in the future.

Appointment attendance behaviors in multiple sclerosis: Understanding the factors that differ between no shows, short notice cancellations, and attended appointments.

BACKGROUND: There has yet to be an examination of how appointment attendance behaviors in multiple sclerosis (MS) are related to scheduling metrics and certain demographic, clinical, and behavioral factors such as cognitive functioning and personality traits. This study aimed to examine the factors that differ between no shows (NS), short notice cancellations (SNC), and attended appointments. METHODS: Participants (n = 110) were persons with MS who were enrolled in a larger cross-sectional study, during which they completed a battery of neuropsychological measures. Data about their appointments in three MS-related clinics the year prior to their study evaluation were extracted from the medical record. Bivariate analyses were done, with post-hoc tests conducted with Bonferroni corrections if there was an overall group difference. RESULTS: A higher number of SNC were noted during the winter, with 22.4% being due to the weather. SNC were also more common on Thursdays, but less frequent during the early morning time slots (7am to 9am). In contrast, NS were associated with lower annual income, weaker healthcare provider relationships, lower self-efficacy, higher levels of neuroticism, depressive symptom severity, and health distress, and greater cognitive difficulties, particularly with prospective memory. CONCLUSIONS: While SNC are related to clinic structure and situational factors like the weather, NS may be more influenced by behavioral issues, such as difficulty remembering an appointment and high levels of distress. These findings highlight potential targets for reducing the number of missed appointments in the clinic, providing opportunities for improved healthcare efficiency and most importantly health.

Establishing the Test-Retest Reliability and Minimal Detectable Change of the Multiple Sclerosis Resiliency Scale.

BACKGROUND: The Multiple Sclerosis Resiliency Scale (MSRS) was designed to assess factors connected to resilience when facing MS-related challenges. Although the MSRS has demonstrated good internal consistency and construct validity, its test-retest reliability has yet to be established. Identifying the minimal detectable change (MDC) of the scale will also improve its utility as an outcome measure for resilience-based interventions. This study aimed to determine the test-retest reliability and MDC of the MSRS. METHODS: Participants were 62 persons with MS who completed the MSRS twice, with a mean ± SD of 16.60 ± 3.97 days (range, 14-30 days) between assessments. Test-retest reliability was evaluated using a 2-way, random-effects, single-measurement intraclass correlation coefficient (ICC), with agreement between time 1 and time 2 visualized with a Bland-Altman plot. The MDC was calculated using the standard error of measurement with a 95% CI. RESULTS: At time 1, the mean ± SD MSRS score was 77.19 ± 11.97 (range, 45.83-97.00); at time 2, the mean ± SD score was 76.38 ± 12.75 (range, 46-98). The MSRS total score had good test-retest reliability (ICC = 0.88), with the subscale ICCs ranging from 0.77 (MS Peer Support) to 0.93 (Spirituality). The MDC for the total score was 11.95. CONCLUSIONS: These findings suggest that the MSRS has good test-retest reliability and that persons with MS with a difference of 12 points or more between assessments have experienced a reliable change. The results support the utility of the MSRS as a potential outcome measure for MS-related resilience.

Identifying prospective memory deficits in multiple sclerosis: Preliminary evaluation of the criterion and ecological validity of a single item version of the memory for intentions test (MIST).

Objectives: Difficulties with prospective memory (PM) are not routinely assessed in persons with multiple sclerosis (MS) even though they can impact daily functioning. This study aimed to examine the preliminary criterion and ecological validity of a highly abbreviated Memory for Intentions Test (MIST) intended to serve as an initial screening of PM in persons with MS. Methods: Participants (n = 112) were classified as impaired if they performed 1.5 standard deviations below the normative mean on the MIST. Individual MIST trials with adequate difficulty and discriminability were examined using receiver operating characteristic analyses, with their classification accuracies, sensitivities, and specificities compared to each other. Regressions were run to evaluate their ecological validity, with appointment attendance and employment as the outcomes. Results: Two trials had a classification accuracy of ≥80%: Trial 3 (79% sensitivity, 84% specificity) and Trial 4 (57% sensitivity, 91% specificity). These two trials had comparable specificity (p=.127), with Trial 3 having slightly higher sensitivity (p=.083). Only Trial 4 was significantly associated with appointment attendance (b = 1.63, p=.047) and unemployment (aOR = 11.20, p=.027). Discussion:Trial 4 of the MIST, a verbal task with a time-based cue that requires participants to complete a pre-specified response after a 15-minute delay, has the potential to be a screener for PM.

What factors are associated with resilience in persons with multiple sclerosis? The role of personality traits.

PURPOSE/OBJECTIVE: While personality traits have been well-documented to be related to resilience in several populations, they have yet to be explored in people with multiple sclerosis (PwMS). As such, this study aimed to understand how personality traits are associated with MS-related resilience after considering the independent contributions of self-efficacy, a significant component of the biopsychosocial model of resilience in MS, and demographic and disease characteristics. RESEARCH METHOD/DESIGN: Participants (N = 112) were PwMS who completed a 1-time cross-sectional study. Resilience was measured using the MS Resiliency Scale, while personality traits and self-efficacy were assessed using the NEO-Five Factor Inventory-3 and University of Washington Self-Efficacy Scale, respectively. An ordinary least squares linear regression was run to examine the relationship between resilience, personality traits, self-efficacy, and demographic and disease characteristics. RESULTS: Self-efficacy (b = .40, 95% CI [.17, .63], p < .001) and neuroticism (b = -.35, 95% CI [-.51, -.19], p < .001), as well as being married (b = .06, 95% CI [.12, 8.00], p = .044) were significantly related to resilience. While extraversion, conscientiousness, and agreeableness were associated with resilience on a bivariate level, they were not significant in the multivariate model. CONCLUSIONS/IMPLICATIONS: This study highlights how neuroticism, along with self-efficacy and marital status, plays a role in MS-related resilience. While further research is needed, these findings may help inform future resilience-building interventions or identify individuals at greater risk for lower levels of resilience. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Comorbidities as predictors of all-cause emergency department utilization among veterans with multiple sclerosis.

BACKGROUND: While comorbidities have been associated with all-cause hospitalizations among persons with multiple sclerosis (MS), there has been no examination of their role in all-cause emergency department (ED) utilization. As such, this study aimed to determine if the presence of comorbidities increases the odds of ED usage in a national sample of Veterans with MS. METHODS: Data were extracted retrospectively from the Veterans Affairs (VA) MS Center of Excellence Data Repository, an electronic health record-based dataset. Veterans who had at least one outpatient visit in 2013, were alive in 2015, and were initially prescribed a disease modifying therapy were included in the dataset (n = 3,742). Current Procedural Terminology codes were used to determine if participants had at least one ED visit during a 24-month time frame beginning 1/1/2013. Comorbidities were identified using ICD-9 codes present before 2013. Separate logistic regressions were conducted for the overall number of comorbidities and categorized comorbidities, adjusting for age, race, and sex. RESULTS: Nearly 32% (n = 1,191) had at least one ED visit, with those Veterans having an average of 6.67 (SD=3.32) comorbidities. After adjusting for demographics, the number of comorbidities was a significant predictor of ED usage (aOR=1.20; 95% CI: 1.17, 1.23, p<.001). Several comorbidities emerged as independent contributors. CONCLUSIONS: All-cause ED utilization is prevalent in MS, with usage increasing in the presence of other chronic conditions. These findings underscore the need to view long-term MS care through the lens of chronic disease management.

The Role of Cognitive Impairment on Physical Therapy Attendance and Outcomes in Multiple Sclerosis.

BACKGROUND AND PURPOSE: Many persons with multiple sclerosis (PwMS) experience cognitive impairments, which may affect their ability to engage in physical therapy. There is limited information on how cognitive impairments are associated with PwMS' ability to participate and improve their functional outcomes. This study aimed to assess the relationship between cognitive functioning and PwMS' attendance, total goal attainment, and functional improvement following physical therapy intervention. METHODS: Participants (n = 45) were PwMS who participated in a larger self-management study and enrolled in physical therapy within the past 2 years. Objective cognitive functioning was examined using tests of prospective memory, retrospective memory, working memory, and processing speed, along with a self-report measure. Bivariate analyses were conducted to examine the relationship between cognitive functioning and each physical therapy outcome (session attendance, attaining goals, and changes in functional outcome measures), followed by logistic regressions with age, education, gender, and disability level as covariates. RESULTS: Difficulty learning new verbal information was associated with a greater likelihood of "no showing" one or more of their physical therapy sessions. Reductions in working memory and processing speed were associated with PwMS not meeting all their rehabilitation goals. Despite deficits in new learning, memory, and processing speed, 85.2% of those with pre-/postscores showed improvements in at least one functional outcome measure following physical therapy intervention. DISCUSSION AND CONCLUSIONS: These findings demonstrate the ability for PwMS to make functional motor gains despite the presence of cognitive impairments and highlight the potential contributions of cognitive functioning on attendance and goal attainment of physical therapy intervention.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A362, which includes background, methods, results, and discussion in the authors' own voices).

What Biopsychosocial Factors Explain Self-management Behaviors in Multiple Sclerosis? The Role of Demographics, Cognition, Personality, and Psychosocial and Physical Functioning.

OBJECTIVES: To examine the biopsychosocial correlates of overall and individual self-management behaviors in persons with multiple sclerosis (MS), including demographics, co-occurring medical diagnoses, cognition, personality traits, and psychosocial and physical functioning as variables. DESIGN: Prospective cross-sectional cohort study. SETTING: Community-based comprehensive MS center. PARTICIPANTS: Adults with MS (n=112) who completed a brief neuropsychological battery that included a self-report survey and performance-based measures of cognitive function. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The MS Self-management Scale-Revised total score was the primary outcome and its 5 subscales (Healthcare Provider Relationship/Communication, Treatment Adherence/Barriers, Social/Family Support, MS Knowledge and Information, Health Maintenance Behaviors) were secondary outcomes. RESULTS: Disease-modifying therapy usage (ß=0.39), social support (ß=0.31), subjective prospective memory (ß=-0.25), emotional well-being (ß=0.20), and histories of diabetes (ß=-0.18) and high cholesterol (ß=0.15) were significantly associated with overall self-management in a multivariate model. Correlates of individual self-management behaviors are also described. CONCLUSIONS: The findings provide insights into the biopsychosocial characteristics contributing to the overall and individual self-management behaviors of persons with multiple sclerosis. The next steps will be to evaluate these factors in a clinical intervention.

Using the multiple sclerosis resiliency scale to identify psychological distress in persons with multiple sclerosis.

BACKGROUND: The Multiple Sclerosis Resiliency Scale (MSRS) is the first resilience measure that is specific to multiple sclerosis (MS)-related challenges. In order for the MSRS to be a valuable tool for clinicians, it is important to identify what is a meaningful score. As such, this study aimed to examine the MSRS' ability to identify persons with MS experiencing depression or anxiety symptoms, as determined using clinically significant scores on the Hospital Anxiety and Depression Scale (HADS). METHODS: Participants (n = 884) were persons with MS who were recruited electronically primarily through the North American Research Committee on MS (NARCOMS). In addition to the MSRS, participants completed the HADS, which was used to categorize them into possible depression and anxiety groups using two criteria from the literature: ≥8 and ≥11. Receiver-operating-characteristic (ROC) curves were run to determine the MSRS total and subscale scores' classification accuracies, with optimal scores for detecting possible depression and anxiety cases determined using the Youden index. RESULTS: The MSRS total score's classification accuracy ranged between 86.2% and 92.2% for depression, with scores of 70 and 68 for the ≥8 and ≥11 criteria, respectively. For anxiety, the MSRS total score's classification accuracy ranged between 78.1% and 82.8%, with scores of 72 and 71 for the ≥8 and ≥11 criteria, respectively. The Emotional and Cognitive Strategies subscale had the strongest classification accuracy of all the subscales. CONCLUSIONS: The MSRS can be used to identify persons with MS experiencing mental health difficulties with relatively good classification accuracy, which may help clinicians to triage who needs additional assistance or support.

Risk factors for infusion-related reactions following Ocrelizumab infusion in a community setting: Development of an electronic medical record-based explanatory model.

BACKGROUND: In 2017, ocrelizumab became the first FDA approved disease modifying therapy (DMT) for primary progressive multiple sclerosis (MS). Although effective, adverse infusion-related reactions (IRR), such as erythema, pruritus, hives, and throat irritation, were frequently reported. OBJECTIVE: To develop an explanatory model of factors associated with increased odds of IRR development to further enhance clinical decision-making when administering ocrelizumab in a community setting. METHODS: A retrospective chart review was performed (n = 422) by extracting patient demographic factors and co-occurring conditions and symptoms from electronic medical records. Bivariate analyses were conducted to examine which demographic and clinical characteristics were associated with IRR development, and variables with a p-value of <.10 were then entered into a logistic regression to create the explanatory model. RESULTS: Being female (odds ratio [OR]: 2.60), Hispanic/Latinx (OR: 3.98), and having a history of a co-occurring tremor (OR: 3.78) were risk factors for increased odds of having an IRR. CONCLUSIONS: These findings may be helpful in guiding clinical practice routines and improving patient expectations regarding the likelihood of IRR development based on their individual demographics and co-occurring conditions and symptoms.

Sex differences in predictors of illness intrusiveness in persons with multiple sclerosis.

PURPOSE: Multiple sclerosis (MS) is a complex, chronic disease that can have debilitating effects on daily activities and well-being, compromising health-related quality of life. One underlying determinant of quality of life (QOL) is perceived illness intrusiveness, which examines the disruptiveness of the condition and/or its related treatment on engagement in interest and activities, in turn affecting psychological functioning. There is evidence that persons with MS (PwMS) have higher level of illness intrusiveness compared to those with other chronic conditions; however, limited research exists on differences by sex. This study aimed to explore these possible differences between men and women, hypothesizing that men with MS will have overall higher illness intrusiveness (lower QOL) when compared to women with MS. METHODS: A total of 922 PwMS were primarily recruited through the North American Research Committee on MS Registry. The participants completed a one-time anonymous online survey. Illness intrusiveness was measured using the Illness Intrusiveness Ratings Scale (IIRS) total score and three subscales. Independent t-tests determined differences in demographics, disease characteristics, and IIRS outcomes. Hierarchical regressions were then used to further assess whether sex was a significant predictor of illness intrusiveness. RESULTS: Men exhibited greater overall, intimacy, and relationship and personal development-related perceived illness intrusiveness. However, sex was only a significant predictor of the Intimacy IIRS subscale after accounting for age, disability, and depression. CONCLUSIONS: These findings highlight the intrusiveness of MS on intimacy and sexual functioning, particularly among men. Potential clinical implications and future directions are discussed.