Tuula M Tyry

Observational studies and registries can play a critical role in elucidating the natural and treated history of multiple sclerosis (MS) and identifying factors associated with outcomes such as disability and health-related quality of life. The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is one of multiple registries w...

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...

PurposeThis study seeks to add to existing literature on depression and illness intrusiveness in chronic disorders by examining, (1) how the perceived intrusiveness of multiple sclerosis (MS) leads to depression, (2) and the mediating role trait mindfulness plays in this relationshipMethods Participants (N = 755) were persons with MS (PwMS) recruit...

Multiple sclerosis is a neurological condition that can have a substantial impact on well-being. In a previous study, men with multiple sclerosis exhibited significantly higher intimacy-related illness intrusiveness, even after considering age, disease severity, and depression. It was hypothesized a psychosocial intervention specific to intimacy co...

Background Disability outcome measures in multiple sclerosis (MS) focus heavily on ambulation; however, limitations in performing everyday activities encompass another type of disability. Objectives The aim of this study was to examine the ability of instrumental activities of daily living (IADL) scale to discriminate between different levels of d...

Objective: We aimed to determine the association between gender identity and sexual orientation on health care utilization in persons with multiple sclerosis (MS), as well as satisfaction with their doctor and comfort discussing sexual health with their doctor. Methods: We surveyed participants from the North American Research Committee on Multi...

Objective: To determine the prevalence of functional gastrointestinal disorders, the demographic and clinical characteristics associated with the presence of functional gastrointestinal disorders, and the effects of these disorders with health-related quality of life (HRQOL) in a large, diverse population of persons with MS. Methods: In 2014, we...

Background: Researchers studying health-related quality of life (HRQOL) in multiple sclerosis (MS) can choose from many instruments, but findings from studies which use different instruments cannot be easily combined. We aimed to develop a crosswalk that associates scores from the RAND-12 to scores on the Health Utilities Index-Mark III (HUI3) in...

Background: Metabolic comorbidity is overrepresented in people with multiple sclerosis (MS) and is associated with adverse MS outcomes. Excess visceral adiposity, approximated using waist circumference (WC), is a risk factor for metabolic comorbidity and predicts poorer outcomes in other neurologic diseases. Objective: To evaluate the associatio...

Background : People with multiple sclerosis (MS) experience symptoms in multiple domains. High-quality patient-reported outcomes (PROs) that assess multiple domains can aid healthcare providers in assessing these symptoms and may support remote disease monitoring. The “SymptoMScreen” PRO correlates with other PROs in MS; however, whether the Sympto...

Introduction: Fatigue is an important aspect of health-related quality of life and a commonly reported symptom by many persons with multiple sclerosis (MS). There are multiple validated instruments available to assess fatigue in MS with differing benefits for each instrument. Objective: We aimed to assess the relationship between the PROMIS Fati...

Objective: To determine tolerance to various risk scenarios associated with current multiple sclerosis (MS) therapies. Methods: People with MS from the North American Research Committee on Multiple Sclerosis Registry's online cohort and the National Multiple Sclerosis Society were invited to complete a questionnaire on tolerance to real-world ri...

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 e...

Background Health communication has evolved substantially over the last few years as the field of electronic health (eHealth) technologies has emerged. It is unknown what demographic and clinical characteristics are associated with use of eHealth technologies in MS. As these technologies are more widely adopted in health settings, it is important t...

Background: We sought to determine the prevalence of pseudobulbar affect (PBA) in a large MS population and assess its association with disability and symptom severity. Methods: North American Research Committee on MS (NARCOMS) registry participants completed the Center for Neurologic Study-Lability Scale (CNS-LS), a validated 7-question self-re...

Objectives: While resilience has been an area of increasing research, there are no measures that are specific to the psychological, social, and physical factors associated with resilience in persons with multiple sclerosis (PwMS). This study aimed to develop the MS Resiliency Scale (MSRS), a multidimensional measure. Items were created based on a...

Rationale: People living with MS often report feeling stigmatized, but little research has examined the psychological impact of this, which is important considering the high prevalence of depression in this population. Objectives: The aim of this study was to assess, concurrently and prospectively, the association between stigma and depression i...

Objective: The objective of this study was to examine the sociodemographic, clinical, and behavioral factors associated with excessive sitting time in persons with multiple sclerosis (MS). Methods: Useful data were obtained from 6483 persons with MS who completed the semi-annual survey of the North American Research Committee on Multiple Scleros...

Introduction: Dietary approaches to management of MS has been proposed for several decades, yet very little is known concerning dietary composition or adherence to specialized diets in people with multiple sclerosis (MS). Methods: We conducted a survey of participants in the North American Research Committee on MS (NARCOMS) registry assessing di...

Background Limited data exist on the prevalence and distribution of sedentary behavior (SB) in multiple sclerosis (MS). Objective The objective of this paper is to describe sitting time as a metric of SB in a large national sample of people with MS. Methods A total of 8004 individuals from the North American Research Committee on MS (NARCOMS) Reg...

Objective: To assess the association between diet quality and intake of specific foods with disability and symptom severity in people with multiple sclerosis (MS). Methods: In 2015, participants in the North American Research Committee on MS (NARCOMS) Registry completed a dietary screener questionnaire that estimates intake of fruits, vegetables...

Background: Bladder, bowel, and sexual symptoms are common among persons with multiple sclerosis (MS). We aimed to investigate the frequency and severity of bladder, bowel, and sexual symptoms, the relationships between these symptoms, satisfaction with treatment of these symptoms, and factors associated with symptom severity and treatment satisfa...

Background: Treatment decisions in multiple sclerosis (MS) are affected by many factors and are made by the patient, doctor, or both. With new disease-modifying therapies (DMTs) emerging, the complexity surrounding treatment decisions is increasing, further emphasizing the importance of understanding decision-making preferences. Methods: North A...

Background: Interest in and use of marijuana by persons with multiple sclerosis (MS) has increased. While potential benefits have been reported, so have concerns about potential risks. Few large studies have been conducted about the perceptions and current usage of marijuana and medical cannabinoids in persons with MS. Methods: Participants in t...

Background: Primary progressive multiple sclerosis (PPMS) represents 10%-15% of all multiple sclerosis (MS) diagnoses. Information regarding socio-demographic and clinical characteristics of persons with PPMS is limited. Objective: To characterize persons with PPMS in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry...

Objective: To assess the opinions of persons with multiple sclerosis (MS) regarding physician-assisted death (PAD). Methods: We surveyed participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry regarding PAD. For each of 5 hypothetical situations, respondents indicated whether they definitely would, probably...

Physical activity levels among persons with multiple sclerosis (MS) are worryingly low. We aimed to identify the factors associated with physical activity for people with MS, with an emphasis on factors that have not been studied previously (bladder and hand dysfunction) and are potentially modifiable. This study was a secondary analysis of data co...

Background Individuals with multiple sclerosis (MS) frequently suffer from impaired sensory function, reduced strength and tremor in the upper limbs, which may interfere with upper limb function. However, upper limb impairment in MS is under-recognized and understudied. We aimed to evaluate the prevalence of upper limb impairment in a large sample...

Background: Trigeminal neuralgia (TN) is a well-recognized cause of facial pain in the general population, and multiple sclerosis (MS) accounts for some of these cases. However, the prevalence of TN in MS is poorly understood. We investigated the prevalence of TN in a large cohort of individuals with MS, and how often TN is the initial presentation...

Aims: To better understand the impact of the clinical course of multiple sclerosis (MS) and disability on employment, absenteeism, and related factors. Materials and methods: We included respondents to the North American Research Committee on Multiple Sclerosis Registry spring 2015 update survey who were United States or Canadian residents, aged 18...

Objective: To evaluate the association between health insurance coverage and disease-modifying therapy (DMT) use for multiple sclerosis (MS). Methods: In 2014, we surveyed participants in the North American Research Committee on MS registry regarding health insurance coverage. We investigated associations between negative insurance change and (1...

Background: In multiple sclerosis (MS), comorbidities have been associated with disability progression and an increased risk of mortality. We investigated the association between comorbidities and mortality in MS after accounting for disability and health behaviors. Methods: We followed North American Research Committee on Multiple Sclerosis (NA...

Background: Physicians must weigh the potential efficacy benefits against the risk of progressive multifocal leukoencephalopathy (PML) in anti-JC virus antibody positive patients treated with natalizumab, especially beyond 2 years. However, disability progression associated with switching therapies versus remaining on natalizumab after 2 years has...

Background: Symptom changes may serve as a risk factor for relapse activity (RA) and disability progression (DP), which could facilitate multiple sclerosis (MS) treatment decisions. Objective: To assess the relationship of symptom change with RA and DP. Methods: We evaluated the relationship of symptom change with subsequent RA and DP using NA...

Background: Caring for someone with multiple sclerosis (MS) can be a stressful experience that requires clinical attention. We investigated the impact of caregiver stress on the emotional well-being and physical health of the MS care partner using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Methods: Care partn...

Acute relapses continue to be a significant aspect of multiple sclerosis (MS) on both the epidemiologic level and the individual patient level. Past work demonstrates residual disability from relapses as well as high patient-reported rates of ineffective relapse treatment. To better characterize the impact of MS relapses on the patient, a relapse-s...

There is little information about risk acceptance of multiple sclerosis (MS) patients to various MS therapies. To determine MS patients׳ tolerance to risky therapies and identify associated characteristics. MS patients from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry׳s online cohort were invited to complete questi...

Sexual dysfunction (SD) is a common symptom in multiple sclerosis (MS). As body image concerns may be related to SD, this study focused on predictors of body image related SD in a sample of MS patients. To evaluate correlates of body image related SD, including sociodemographics, mental health, and select illness variables including help-seeking be...

The purpose of this study was to retrospectively compare disability progression, measured by PDDS, in NARCOMS participants who either remained on natalizumab or who switched to fingolimod or interferon-beta/glatiramer acetate (IFNβ/GA) therapies after ≥2 years of natalizumab treatment. Propensity scores were used to match participants according to...

Introduction The evolving landscape of disease-modifying therapies (DMTs) for multiple sclerosis raises important questions about why patients change DMTs. Physicians and patients could benefit from a better understanding of the reasons for switching therapy. Purpose To investigate the reasons patients switch DMTs and identify characteristics asso...

Low health literacy is generally associated with poor health outcomes; however, health literacy has received little attention in multiple sclerosis (MS). The aim of this study was to investigate the health literacy of persons with MS using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. In 2012, we conducted a cross-...

Injectable first-line disease-modifying therapies (DMTs) for multiple sclerosis (MS) are generally prescribed for continuous use. Accordingly, the various factors that influence patient persistence with treatment and that can lead some patients to switch medications or discontinue treatment may affect clinical outcomes. Using data from the North Am...

Sexual dysfunction is a prevalent symptom in multiple sclerosis (MS) that may affect patients' health-related quality of life (HrQoL). The objective of this paper is to examine the impact of sexual dysfunction on HrQoL in a large national sample using The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19). Participants were recru...

Effective health communication is important for informed decision-making, yet little is known about the range of information sources used by persons with multiple sclerosis (MS), the perceived trust in those information sources, or how this might vary according to patient characteristics. We aimed to investigate the sources of health information us...

Background: Sexual dysfunction is common in multiple sclerosis (MS) but reliable and valid measurement in this population is needed. Objective: The objective of this research is to re-validate the Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 in a large US sample. Methods: A total of 6300 MS patients from the NARCOMS registry comp...

Objective Dizziness affects 49–59% of persons with MS but few prior studies examined the impact of dizziness in persons with multiple sclerosis (MS). Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we examined the measurement properties of the Dizziness Handicap Inventory (DHI) in persons with MS, and the assoc...

Background: Research on vision-related quality of life (QOL) in multiple sclerosis (MS) is still limited. Tools such as the Visual Functioning Questionnaire-25 (VFQ-25) and the Vision Performance Scale (VPS) facilitate assessments of the severity of visual impairment and its impact on daily life. Objective: The objective of this paper is to exam...

OBJECTIVE To assess the usefulness of self-report registries in establishing a comprehensive national MS surveillance system. BACKGROUND ATSDR has previously reported on the feasibility of using Medicare (MC), Veterans Health Administration (VHA), and Veterans Benefits Administration (VBA) databases to develop a national MS surveillance system. H...

Objective: Dizziness affects 49–59% of persons with MS but few prior studies examined the impact of dizziness in persons with multiple sclerosis (MS). Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we examined the measurement properties of the Dizziness Handicap Inventory (DHI) in persons with MS, and the asso...

In this study the authors present results from a survey of 99 Latinos with multiple sclerosis (MS), including demographic, disease, and mental health characteristics. Four in 10 respondents reported depressive symptoms; half thought they had more worries than other people due to their MS; and about 29 % thought they needed mental health care in the...

: In previous studies we and others have demonstrated an association with apolipoprotein (APOE) ε4 genotype and the presence of cognitive deficits in multiple sclerosis (MS). In this follow-up study, we have assessed whether APOE ε4 status exacerbates progression of cognitive deficits in MS. : A total of 197 patients with MS were assessed for APOE...

Visual comorbidities are common in multiple sclerosis (MS) but the impact of visual comorbidities on visual disability is unknown. We assessed the impact of visual and vascular comorbidities on severity of visual disability in MS. In 2006, we queried participants of the North American Research Committee on Multiple Sclerosis (NARCOMS) about catarac...

Little is known about the impact of comorbidity on health-related quality of life (HRQOL) in multiple sclerosis (MS). We investigated the association of comorbidity and health-related HRQOL among participants in the North American Research Committee on Multiple Sclerosis (NARCOMS). In 2006, we queried NARCOMS participants regarding physical and men...

Smoking is a risk factor for multiple sclerosis (MS) and autoimmune disease, and might explain an increased risk of comorbid autoimmune disease (CAD) in MS. We compared the risk of CAD in smokers and nonsmokers with MS. Participants enrolled in the North American Research Committee on Multiple Sclerosis Registry reported their smoking status, the p...

Although multiple sclerosis (MS) is the most common neurologic disease disabling younger adults, very little is known about the characteristics of young adults with MS and the impact of MS on their lives. To conduct a pilot study of the demographic, disease, treatment, and psychosocial characteristics of young adults with MS (aged 18 and 31 years)....

Comorbidity may be associated with the clinical phenotype of disease and may affect prognostication and treatment decisions. Using the North American Research Committee on Multiple Sclerosis Registry, we described comorbidities present at onset and diagnosis of multiple sclerosis (MS) and examined whether comorbidities present at onset were associa...

Identify racial/ethnic differences among people with multiple sclerosis (MS) in demographics, MS disease characteristics, and health services received. We analyzed enrollment data from the Registry of the North American Research Committee on Multiple Sclerosis (NARCOMS) Project to compare 26,967 Caucasians, 715 Latinos, and 1,313 African Americans...

Health-related quality of life (HRQOL) is an important consideration for patients with a chronic disease such as multiple sclerosis (MS). We conducted a review of published articles and conference proceedings to evaluate the use of patient-reported measures of HRQOL in MS. A variety of HRQOL measures are used in MS research and clinical practice se...

Vascular comorbidity adversely influences health outcomes in several chronic conditions. Vascular comorbidities are common in multiple sclerosis (MS), but their impact on disease severity is unknown. Vascular comorbidities may contribute to the poorly understood heterogeneity in MS disease severity. Treatment of vascular comorbidities may represent...

Background: About 30% of people with multiple sclerosis (MS) require some form of home care assistance and 80% of that assistance is provided by informal or unpaid caregivers. Objective: To identify any gender differences among people with MS experiencing greater levels of disability who received informal care. Methods: Data presented in this study...

To determine if the demographic characteristics and health care needs of younger people with MS differ from older people with MS. The study analyzed enrollment data from the NARCOMS Registry to compare 1,987 younger adults with MS (30 years and younger) to 29,245 other adults with MS (over 30 years). Analyses of the NARCOMS data focused on descript...

To assess the effects of mobility loss on instrumental activities of daily living (IADL) and socioeconomic status in multiple sclerosis (MS) patients. Participants were active registrants in the North American Research Committee on Multiple Sclerosis registry completing the Fall 2006 (IADL analysis, n = 10,396) or Spring 2007 (socioeconomic analysi...

About 30% of people with multiple sclerosis (MS) need some form of home care assistance, with 80% of that assistance provided by informal or unpaid care givers. This study focuses on the care givers to 530 more disabled people with MS, with the objective to learn more about informal care giving to people with greater dependency and need for assista...

Osteoporosis is an important risk factor for fragility fractures. Although osteoporosis is considered common in multiple sclerosis (MS), few previous studies focused on fractures in MS. Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we investigated the frequency of osteoporosis, fractures, and clinical risk fa...

Depression in multiple sclerosis (MS) may be due to several factors, including the presence of physical comorbidities. Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we examined whether individuals with MS and physical comorbidities have an increased risk of depression compared with those without physical como...

About 30% of the people with multiple sclerosis (MS) require some form of home care assistance and 80% of that assistance is provided by informal or unpaid care givers. This study focusses on the care givers for 530 more disabled people with MS, with the objective of learning more about informal care giving to people with greater dependency and nee...

Previous work suggested that veterans with multiple sclerosis (MS) treated through the Veterans Health Administration (VHA) had greater access to multidisciplinary care than veterans treated elsewhere. It is unknown whether other VHA-related differences in processes of MS care exist. Using the North American Research Committee on Multiple Sclerosis...