Background: While standard clinical assessments provide great value for people with multiple sclerosis (PwMS), they are limited in their ability to characterize patient perspectives and individual-level symptom heterogeneity.
Objectives: To identify PwMS subgroups based on patient-reported outcomes (PROs) of physical, cognitive, and emotional symptoms. We also sought to connect PRO-based subgroups with demographic variables, functional impairment, hypertension and smoking status, traditional qualitative multiple sclerosis (MS) symptom groupings, and neuroperformance measurements.
Background: Loss of mobility is common in persons with multiple sclerosis (PwMS), but little is known about this impairment from the patient's perspective.
Objective: The aim is to model longitudinal variation in a mobility patient-reported outcome (PRO) and compare trajectories to those observed for Timed 25-Foot Walk (T25FW) in a retrospective cohort.
Methods: Latent-class growth analysis was applied to 47,508 measures of Performance Scales© Mobility PRO (PS-Mobility) over ~4 years for 8524 PwMS.
Background: Caregivers of individuals with multiple sclerosis (MS) have emotional, instrumental, wellness, and social needs beginning with their partner's diagnosis and continuing throughout the disease course. Their feelings of grief, anxiety, depression, isolation, and fatigue, as well as the limited time they have for their own self-care, impact their health and quality of life; yet caregiver needs often go unrecognized by health care providers, extended family, friends, and employers. This project creates an online caregiver resource that will benefit caregivers, enable MS clinicians to offer caregivers the support and resources they need in a timely and time-efficient way, and thereby benefit individuals with MS as well.
View Article and Find Full Text PDFThe integration of service learning into public health curriculum allows students to apply and ultimately better understand often abstract but important theoretical concepts. We provide lessons learned and practical advice on how to plan and implement an experiential learning project over a two-semester period for upper level undergraduate public health students. Through application of program planning pedagogy, students obtained real-world experience while simultaneously improving mental health for college students.
View Article and Find Full Text PDFBackground: Ambulatory impairment is a common and complex manifestation of multiple sclerosis (MS), and longitudinal patterns are not well understood.
Objective: To characterize longitudinal walking speed trajectories in a general MS patient population and in those with early disease (⩽ 5 years from onset), identify subgroups with similar patterns, and examine associations with individual attributes.
Methods: Using a retrospective cohort study design, latent class growth analysis was applied to longitudinal timed 25-foot walk (T25-FW) data from 7683 MS patients, to determine T25-FW trajectories.
Objectives: The aim of the project was to examine the personal beliefs, motivators, and barriers in people with Parkinson's disease (PwPD) relating to their participation in a year-round community-based cycling program, Pedaling for Parkinson's (PFP).
Design: Cross-sectional survey from a 12-month pragmatic study.
Setting: Five community-based PFP sites.
Background: Socioeconomic disadvantage may be an important contributor to clinical outcomes in MS but is not well understood. Our objective was to examine the associations between Area Deprivation Index (ADI), a validated measure of neighborhood-level disadvantage, with clinical outcomes.
Methods: We assessed the longitudinal association between MS Performance Test (MSPT) and quality of life in Neurological Disorders (Neuro-QoL) measures with ADI quartiles (Q1: lowest deprivation - Q4 highest deprivation) in relapsing remitting MS (RRMS) and progressive MS cohorts.
Background: Many individuals with multiple sclerosis (MS) depart the workforce prematurely. In the United States, access to insurance, including health, disability income, long-term care, and life insurance, is largely employment-based or purchased from earnings. Many individuals we see in the clinic experience financial hardship because of a lack of insurance, even if working.
View Article and Find Full Text PDFMult Scler Relat Disord
January 2022
Background: There are no validated clinical outcome assessments (COAs) used in neurosarcoidosis.
Objective: We surveyed clinicians who treat patients with neurosarcoidosis to determine: 1) current approaches to assessment of neurologic impairment, and 2) clinicians' needs regarding future COA development.
Methods: Physician contacts from the Foundation for Sarcoidosis Research and Neurosarcoidosis Consortium Group were sent an online survey.
Purpose Of Review: To assess the reasons for considering discontinuation of disease-modifying therapies (DMTs)in patients with multiple sclerosis (MS). Relevant aspects of the natural history, pathology, and immunology are analyzed.
Recent Findings: A number of retrospective observational studies in aggregate indicate that stopping DMTs may be attempted in older individuals with stable disease.
Background: Optimizing multiple sclerosis treatment warrants understanding of changes in physical, mental, and social health.
Objective: To assess the impact of natalizumab on Quality of Life in Neurological Disorders (Neuro-QoL) scores.
Methods: Annualized change in T-scores and likelihood of ≥5-point improvement over baseline were calculated for each Neuro-QoL domain after natalizumab initiation.
In North America, the emerald ash borer, Agrilus planipennis Fairmaire (Coleoptera: Buprestidae), continues to spread, and its egg parasitoid, Oobius agrili Zhang and Huang (Hymenoptera: Encyrtidae), is being released for emerald ash borer biocontrol well beyond their endemic climatic ranges in China. We developed a multiple cohort rate summation model to simulate O. agrili F0, F1, and F2 generations, and emerald ash borer oviposition for examining host-parasitoid synchrony across a north-south gradient from Duluth, MN (latitude 46.
View Article and Find Full Text PDFBackground: In order to provide patient center care, our multiple sclerosis (MS) clinic assesses patient concerns before clinical encounters, first by asking the optional qualitative question "What is the most important thing you what your health-care provider to know today" (most important concern of the patient [MIPC]) and then completing quantitative patient-reported outcome measures (PROMs) including Quality of Life in Neurological Disorders (Neuro-QoL). Both sets of questions are designed to facilitate encounters that address patients' values and preferences.
Objective: Determine whether the qualitative MIPC responses provided unique information not included in PROMs or clinical assessments.
We describe the London community testing programme developed for COVID-19, audit its effectiveness and report patient acceptability and patient adherence to isolation guidance, based upon a survey conducted with participants.Any patients meeting the Public Health England (PHE) case definition for COVID-19 who did not require hospital admission were eligible for community testing. 2,053 patients with suspected COVID-19 were tested in the community between January and March 2020.
View Article and Find Full Text PDFThere is a growing need for patient and public involvement (PPI) to inform the way that research is developed and performed. International randomized controlled trials are particularly likely to benefit from PPI, but guidance is lacking on how or when it should be incorporated. In this article, we describe the PPI process that occurred during the design and initiation of an international treatment clinical trial in MS.
View Article and Find Full Text PDFBackground: Comprehensive and efficient assessments are necessary for clinical care and research in chronic diseases. Our objective was to assess the implementation of a technology-enabled tool in MS practice.
Method: We analyzed prospectively collected longitudinal data from routine multiple sclerosis (MS) visits between September 2015 and May 2018.
Objective: To evaluate the impact of a surgical site infection (SSI) prevention bundle on SSI rates after hysterectomy for benign and malignant indications at an urban academic medical center.
Methods: The bundled invention was implemented for all abdominal gynecologic surgeries at Prentice Women's Hospital, Chicago, USA, from August 2016 to January 2017, and officially incorporated in department-wide policy from February 1, 2017. SSI data were prospectively collected for any open, vaginal, laparoscopic, or robotic hysterectomy for benign or malignant indications performed from February 2017 to January 2018.
Background: Patient-focused literature on fatigue in progressive forms of multiple sclerosis (MS) is sparse. This study aimed to explore progressive MS patients' experiences of fatigue.
Methods: Adult patients in the United States with primary progressive MS (n=21) and secondary progressive MS (n=23), recruited from research panels, completed the following PRO measures: Patient Global Impression of Severity (Fatigue) (PGI-F); Fatigue Scale of Motor and Cognitive Functions (FSMC); Modified Fatigue Impact Scale (MFIS); Patient Health Questionnaire, two-item version (PHQ-2); and Patient Determined Disease Steps (PDDS).
Multiple Sclerosis (MS) is a common cause of neurological disability among young adults and has a high economic burden. Currently there are 18 disease modifying agents for relapsing MS, which were tested in clinical trials versus placebo or an active comparator in a pairwise manner. However, there is currently no consensus on the fundamental principles of treatment approach and initial therapy selection.
View Article and Find Full Text PDFBackground: Objective and longitudinal measurements of disability in patients with multiple sclerosis (MS) are desired in order to monitor disease status and response to disease-modifying and symptomatic therapies. Technology-enabled comprehensive assessment of MS patients, including neuroperformance tests (NPTs), patient-reported outcome measures (PROMs), and MRI, is incorporated into clinical care at our center. The relationships of each NPT with PROMs and MRI measures in a real-world setting are incompletely studied, particularly in larger datasets.
View Article and Find Full Text PDFLancet Diabetes Endocrinol
December 2019
Background: Odanacatib, a cathepsin K inhibitor, reduces bone resorption while maintaining bone formation. Previous work has shown that odanacatib increases bone mineral density in postmenopausal women with low bone mass. We aimed to investigate the efficacy and safety of odanacatib to reduce fracture risk in postmenopausal women with osteoporosis.
View Article and Find Full Text PDFBackground: Therapeutic research in multiple sclerosis (MS) has focused on the development of treatments with little investigation regarding the possibility of discontinuation of disease-modifying therapies (DMTs).
Objective: To understand the opinion of individuals with MS concerning stopping DMTs and the factors that influence the decision-making process.
Methods: A mixed method approach was used starting with three focus groups from which a survey was developed.