Author Of 6 Presentations
LB1144 - How does Coronavirus Disease 2019 (COVID-19) “Sheltering in Place” Affect Ambulatory Activity in People with Multiple Sclerosis? (ID 327)
Abstract
Background
People with neurological conditions that impair mobility such as multiple sclerosis (MS) have low levels of physical activity, with walking their primary form of exercise. When the San Francisco Bay Area shelter-in-place order was announced in mid-March 2020 to flatten the curve of SARS-CoV-2 infections, the abrupt closure of gyms, fitness studios, and malls greatly limited options for safe exercise. We leveraged an ongoing study utilizing wearable technology, to understand the impact of the pandemic and the shelter-in-place policy on physical activity in people with MS (PwMS) at-risk for neurological worsening.
Objectives
To test the hypothesis that the average daily step count (STEPS) in people with MS would decrease due to the COVID-19 shelter-in-place order.
Methods
Average daily step count (STEPS) was measured from a large UCSF MS Center cohort of PwMS using a wrist-worn accelerometer (Fitbit Flex2) as previously detailed. STEPS before and after the shelter-in-place were available for 42 participants. Amount, type and frequency of exercise, as well as fatigue (Modified Fatigue Index; MFIS-5) and mental health (Mental Health Inventory; MHI-5) were assessed via questionnaire. The UCSF Institutional Review Board approved the study protocol. Descriptive statistics and pre-post comparisons using Wilcoxon Signed-rank were performed, and figures generated, using R studio.
Results
A decrease in STEPS was observed during the week (p =0.024), and month (p=0.048) after versus before the shelter-in-place order in 42 participants with valid STEPS data during this time period. Individual data showed marked decreased in STEPS the week immediately post shelter-in-place, yet some recovered to near pre shelter-in-place levels. As a group, this rebound was not significant. No significant difference comparing 2019 and 2020 similar epoch STEPS data was observed for these participants.
Conclusions
The data supported the hypothesis that physical activity would be reduced in people with MS due to the COVID-19 activated shelter-in-place. Overall prolongation of reduced activity is troubling, particularly in a population where low activity is already pervasive due to detrimental secondary effects of inactivity. These observations were made possible by the use of remote activity monitoring and aligns with broader efforts to use wearables to track and promote physical activity, augment telehealth, and improve telerehabilitation across populations with chronic neurological disorders.
P0110 - Modulation of cerebrospinal fluid immunoglobulins by ocrelizumab treatment (ID 1597)
Abstract
Background
Intrathecal production of immunoglobulin (Ig) and the presence of cerebrospinal fluid (CSF)–specific oligoclonal bands (OCBs) are hallmarks of multiple sclerosis (MS) that persist throughout the disease course and treatment.
Objectives
To describe baseline (BL) correlations of CSF IgM and IgG production with CSF biomarkers and to assess the pharmacodynamic effects of ocrelizumab (OCR) treatment on these parameters in patients with relapsing MS (RMS) from the Ocrelizumab Biomarker Outcome Evaluation (OBOE) study (NCT02688985).
Methods
Seventy-nine of 100 total patients with RMS had available BL CSF samples for assessment of IgG OCBs, IgG and IgM (measured at University Medical Center Göttingen), with demographic, MRI and clinical parameters representative of the total RMS population. CSF samples at either 12 (n=22), 24 (n=24) or 52 (n=17) weeks postdose and from a 12-week reference arm (no OCR; n=16) were assessed for longitudinal changes.
Results
Median (interquartile range [IQR]) CSF levels at BL were as follows: IgG index, 0.79 (0.63–1.28); IgM index, 0.19 (0.11–0.33); CD3+ T cell number, 2.52 (0.80–5.61) cells/µL; CXCL13, 9.89 (3.91–31.50) pg/mL; CCL19, 47.95 (31.09–70.86) pg/mL; neurofilament light chain (NfL) 1280.0 (828.1–2968.9) pg/mL. At BL, IgG index and IgM index correlated moderately with levels of B cells (r=0.65, r=0.4 respectively), T cells (r=0.54, r=0.3 respectively) and CXCL13 (r=0.58, r=0.43 respectively), but not CCL19 or NfL. IgG index tended to decrease with OCR treatment and was significantly reduced by 52 weeks (n=17/79; median [IQR] change from BL −9.5% [−20.4% to −0.1%]; p<0.02) compared with stable levels in the reference arm. While IgG OCBs were detected at BL in all patients, IgG OCBs tended to decrease with OCR treatment, with three of 17 patients having no detectable IgG OCBs at 52 weeks. Reductions in IgM index were not observed with OCR treatment.
Conclusions
Baseline CSF levels of B cells, T cells and CXCL13 correlated with IgG index and to a lesser degree IgM index in patients with RMS from the OBOE study. Significant reductions were observed in IgG index with OCR treatment, along with a trend toward reduced OCBs, with three patients showing no detectable OCBs. These data suggest that OCR impacts CSF Ig production, a hallmark of MS not previously thought to be affected by B-cell depletion therapy. These 1-year observations need to be confirmed with longer-term data and correlated with clinical response.
P0253 - Gaps in characterization of bladder dysfunction in clinical care and research (ID 1934)
Abstract
Background
Neurogenic bladder dysfunction (BD) affects up to 90% of patients with multiple sclerosis (MS) at some point during the disease course and is a highly debilitating symptom. Despite its prevalence, there are no consensus guidelines for screening and ascertaining BD. These discrepancies could underrepresent the impact of BD on neurological decline.
Objectives
In a cohort of women with MS, we compared clinical notes and research registry scores pertaining to BD. We secondarily evaluated how often Bowel/Bladder Functional System (B/B FS) scores reflected the severity of bladder (rather than bowel) scores.
Methods
For 100 adult women with MS in the University of California, San Francisco longitudinal observational EPIC cohort (epicstudy.ucsf.edu), we retrospectively extracted data on bladder and bowel symptoms and treatments from prospectively collected clinical notes in the electronic medical record and compared them with research-grade B/B FS scores annually collected in the EPIC registry. We performed descriptive statistics to evaluate agreement between the clinical notes (BD) and research B/B FS scores at matching timepoints (within 6 months). Finally, seeking to understand whether the severity of BD could be inferred by the B/B FS, we calculated the frequency that bladder (vs. bowel) symptoms drove a higher B/B FS.
Results
We included 89 women, aged 37 to 77, with at least one matching clinical and research visit; a total of 316 visits were examined. Overall, 63 of the 89 participants (70.7%) experienced BD symptoms per clinical notes. BD symptoms were described in 284 of the 316 visits (89.9%), and research B/B FS scores were available for 283 of these. The severity of BD symptoms matched the research B/B FS in 203 (71.5%) of visits. For the rest, BD symptoms were more severe than research B/B FS for 46 visits and less severe for 34. BD severity “drove” the overall B/B FS score in 280 (98.6%); in contrast, in only 4 visits (1.4%) bowel symptoms were more severe.
Conclusions
We noted moderate discrepancy between clinical notes and research B/B FS; in 10% visits, BD symptoms were not ascertained; and in 16.3% research evaluations, BD symptoms were underscored. Inconsistencies in screening for both clinical care and research point to the need for consensus around consistency of BD symptom ascertainment and B/B FS scoring. Of relevance to interpreting B/B FS in the context of understanding the impact of BD on clinical course, B/B FS in most cases reflected the severity of bladder symptoms.
P1005 - An electronic, unsupervised Patient Reported Expanded Disability Status Scale for Multiple Sclerosis (ID 1921)
Abstract
Background
In persons with multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) is the criterion standard for assessing disability, but its in-person nature constrains patient participation in research and clinical assessments.
Objectives
To develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity.
Methods
We enrolled 136 adult MS patients, split into a preliminary testing Cohort 1 (n=50), and a validation Cohort 2 (n=86), which was evenly distributed across EDSS groups. Each patient completed an ePR-EDSS either immediately before or after a MS clinician’s Neurostatus EDSS (NS-EDSS) evaluation. The final ePR-EDSS version includes 23 questions, takes between 7-12 minutes to complete (based on time measured for Cohort 2 participants), and can be accessed at https://openmsbioscreen.ucsf.edu/predss/about.
Results
In Cohort 2, mean age was 50.6 years (range 26-80) and median EDSS was 3.5 (IQR 1.5, 5.5). The ePR-EDSS and EDSS agreed within 1-point for 86% of examinations; kappa for agreement within 1-point was 0.85 (p<0.001). The correlation coefficient between the two measures was 0.91 (<0.001). For individual functional systems, complete agreement was highest for the brainstem score (55.8%) and lowest for the sensory score (31.4%). In sensitivity analyses adjusted for NS-EDSS, the absolute difference between ePR-EDSS and NS-EDSS was not significantly related to age, sex, disease duration, years of education, or the timepoint at which the ePR-EDSS tool was assessed (before/after neurological exam).
Conclusions
The ePR-EDSS is unique compared to other published tools - it can be accessed and performed by the patient without any supervision, is freely and openly available, has built-in logic to calculate functional system and total scores, and is validated over a wide NS-EDSS range. It demonstrated high correlation with NS-EDSS, with good agreement even at lower EDSS levels. For clinical care, the ePR-EDSS could enable the longitudinal monitoring of a patient’s disability. For research, it provides a valid and rapid measure across the entire spectrum of disability and permits broader participation with fewer in-person assessments.
P1107 - Proactively evaluating and treating changes in function in people with multiple sclerosis: the CoachMS pilot study (ID 1488)
Abstract
Background
In current disease management models for multiple sclerosis (MS), symptoms are treated separately, by multiple specialists, despite the fact that many symptoms interact and exacerbate one another. Impairments in bladder function, ambulation, and mood (BAM) are a common and often debilitating triad of symptoms with compounded detrimental effect.
Objectives
Assess the feasibility of CoachMS: a novel closed-loop, remote, interdisciplinary symptom management platform that integrates specific behavioral approaches to encourage patient self-management.
Methods
We enrolled 21 participants from the University of California, San Francisco MS Center with clinician- or self-reported symptoms in at least 2 of the 3 BAM domains. To quantitatively measure BAM symptoms, participants were given a Fitbit Flex2 to wear for the duration of the study and assessed with weekly, online surveys. At 2 weeks, together with the study team, individual goals were set for each participant. A simple 1:1 randomization allocated participants to either Coach or control groups. The CoachMS group received targeted interventions throughout the remainder of the study if they failed to meet their individual BAM goals, or displayed worsening. The control group was monitored without intervention. Our primary outcome was feasibility; secondary outcomes included proportion of recommended treatments pursued, and changes in BAM symptom severity.
Results
12 participants (55%) completed the study. These participants demonstrated excellent adherence to study protocol and reported satisfaction with the pilot platform. Coach participants demonstrated greater follow-through with clinical recommendations from the 2-week goal setting stage than controls (OR 9.33, 95% CI (0.89, 97.62)). As a cohort, a trend towards improvement in each BAM symptom was noted although the CoachMS and control groups did not differ. One control participant, reporting suicidality in the weekly questionnaires but not to her primary clinicians, was urgently evaluated per protocol, and hospitalized.
Conclusions
The CoachMS platform, a closed-loop system for managing MS symptoms, was feasible; retention can be further optimized with lower questionnaire burden. Reminders and contact from study team improved recommendation follow-though in the Coach group, particularly for outside referrals. The CoachMS protocol could represent a viable, accessible and cost-effective tool to monitor and treat MS symptoms in near real-time; a larger trial is planned.
P1113 - Underutilization of Physical Therapy Resources for Symptomatic Women with MS During and Following Pregnancy (ID 1240)
Abstract
Background
Patients with MS continue to have symptoms of their disease even when inflammatory activity is reduced by DMTs. Although this activity is reduced during pregnancy - especially in the third trimester – women with MS can experience ongoing symptoms during pregnancy, or new ones in the immediate post-partum period, that degrade quality of life. Many MS-related and postpartum symptoms can be improved with physical therapy (PT), but there are no guidelines on pregnancy-related rehabilitation in MS.
Objectives
To evaluate the prevalence of PT-amenable symptoms and patterns of PT referrals in a cohort of UCSF MS Clinic patients who became pregnant.
Methods
Data collected prospectively between 09-2005 to 08-2019 were retrospectively extracted from electronic medical records (EMR) for the year before conception, during pregnancy, and year postpartum. This included clinical visits, MS therapies and symptoms (as defined by the National MS Society). PT and pelvic floor PT orders and notes were also extracted.
Results
We included 142 live birth pregnancies from 118 women. During the course of their pregnancy and within the year postpartum, 107 women (75.4%) reported at least one PT-amenable symptom. A total of 30 (28.0%) referrals were made to PT, with attendance confirmed for 10 (33.3%). Symptoms most commonly triggering a referral for PT evaluation were numbness and urinary incontinence. Falls were reported after 10 of the pregnancies; 4 resulted in a referral to PT. Forty-one women reported urinary incontinence: 11 (26.8%) were referred to PT, and 2 to pelvic floor PT. Nineteen women experienced a documented relapse during pregnancy and/or postpartum: 11 received a PT referral, and 4 attended PT.
Conclusions
While women with MS recorded at least 1 PT-amenable during or following 75.4% of their pregnancies, only 28% of these were referred to PT – and only a third attended PT. Of significance was the 4.9% referral rate for pelvic floor PT in postpartum women with a record of urinary incontinence. Pelvic floor PT is a mainstay of general postpartum care in many European countries. These data illustrate critical gaps in rehabilitation referral, access and use at the intersection of neurological conditions and pregnancy in a large US-based MS clinic. They lend support for quality improvement efforts to improve care pathways and for telerehabilitation innovations to reduce barriers to access and improve synergistic care between PT, MD and urologic care.