Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol.

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. METHODS: We assembled a caregiver advisory board to help us identify caregiver needs and corresponding resources starting from diagnosis and continuing throughout the disease course. We then surveyed the larger MS caregiver community for validation and refinement of the resource list. Each of the identified resources was then vetted for quality and accuracy by the authors. RESULTS: The caregiver resources are now ready to be put into a dedicated website that will allow easy access to information, support, tools, and resources as needed. CONCLUSIONS: The process of creating this caregiver resource confirmed longstanding findings in the literature about the caregiving role. The resource that has been created will benefit caregivers of individuals with MS, their loved ones, and MS clinicians.

Exercise and lifestyle physical activity recommendations for people with multiple sclerosis throughout the disease course.

OBJECTIVES: To provide clinicians who treat multiple sclerosis (MS) patients with evidence-based or expert opinion-based recommendations for promoting exercise and lifestyle physical activity across disability levels. METHODS: The National MS Society ("Society") convened clinical and research experts in the fields of MS, exercise, rehabilitation, and physical activity to (1) reach consensus on optimal exercise and lifestyle physical activity recommendations for individuals with MS at disability levels 0-9.0 on the Expanded Disability Status Scale (EDSS) and (2) identify and address barriers/facilitators for participation. RECOMMENDATIONS: Based on current evidence and expert opinion, the Society makes the following recommendations, endorsed by the Consortium of Multiple Sclerosis Centers:Healthcare providers should endorse and promote the benefits/safety of exercise and lifestyle physical activity for every person with MS.Early evaluation by a physical or occupational therapist or exercise or sport scientist, experienced in MS (hereafter referred to as "specialists"), is recommended to establish an individualized exercise and/or lifestyle physical activity plan.Taking into account comorbidities and symptom fluctuations, healthcare providers should encourage ⩾150 min/week of exercise and/or ⩾150 min/week of lifestyle physical activity.Progress toward these targets should be gradual, based on the person's abilities, preferences, and safety.If disability increases and exercise/physical activity becomes more challenging, referrals to specialists are essential to ensure safe and appropriate prescriptions.When physical mobility is very limited, exercise should be facilitated by a trained assistant.

Computerized neuropsychological assessment devices in multiple sclerosis: A systematic review.

BACKGROUND: The proliferation of computerized neuropsychological assessment devices (CNADs) for screening and monitoring cognitive impairment is increasing exponentially. Previous reviews of computerized tests for multiple sclerosis (MS) were primarily qualitative and did not rigorously compare CNADs on psychometric properties. OBJECTIVE: We aimed to systematically review the literature on the use of CNADs in MS and identify test batteries and single tests with good evidence for reliability and validity. METHOD: A search of four major online databases was conducted for publications related to computerized testing and MS. Test-retest reliability and validity coefficients and effect sizes were recorded for each CNAD test, along with administration characteristics. RESULTS: We identified 11 batteries and 33 individual tests from 120 peer-reviewed articles meeting the inclusion criteria. CNADs with the strongest psychometric support include the CogState Brief Battery, Cognitive Drug Research Battery, NeuroTrax, CNS-Vital Signs, and computer-based administrations of the Symbol Digit Modalities Test. CONCLUSION: We identified several CNADs that are valid to screen for MS-related cognitive impairment, or to supplement full, conventional neuropsychological assessment. The necessity of testing with a technician, and in a controlled clinic/laboratory environment, remains uncertain.

Depression and Suicidality in Multiple Sclerosis: Red Flags, Management Strategies, and Ethical Considerations.

Multiple sclerosis (MS) causes physical, emotional, and cognitive changes that impact function and quality of life (QoL). Risk factors for suicidality in MS patients include a high incidence of depression, increased isolation, and reduced function/independence. PURPOSE OF REVIEW: To describe the epidemiology of depression and suicidality in this population, highlight warning signs for suicidal behavior, provide recommendations and resources for clinicians, and discuss ethical decisions related to patient safety vs. right to privacy. RECENT FINDINGS: Fifty percent of MS patients will experience a major depression related to brain MRI factors and disease-related psychosocial challenges. Nevertheless, depression is under-recognized/treated. The standardized mortality ratio (SMR) indicates a suicide risk in the MS population that is twice that in the general population. Given the prevalence of depression and the increased risk of suicide in the MS population, any clinician providing care for these patients must be prepared to recognize and respond to potential warning signs.

Recommendations for cognitive screening and management in multiple sclerosis care.

PURPOSE: To promote understanding of cognitive impairment in multiple sclerosis (MS), recommend optimal screening, monitoring, and treatment strategies, and address barriers to optimal management. METHODS: The National MS Society ("Society") convened experts in cognitive dysfunction (clinicians, researchers, and lay people with MS) to review the published literature, reach consensus on optimal strategies for screening, monitoring, and treating cognitive changes, and propose strategies to address barriers to optimal care. RECOMMENDATIONS: Based on current evidence, the Society makes the following recommendations, endorsed by the Consortium of Multiple Sclerosis Centers and the International Multiple Sclerosis Cognition Society: Increased professional and patient awareness/education about the prevalence, impact, and appropriate management of cognitive symptoms. For adults and children (8+ years of age) with clinical or magnetic resonance imaging (MRI) evidence of neurologic damage consistent with MS: As a minimum, early baseline screening with the Symbol Digit Modalities Test (SDMT) or similarly validated test, when the patient is clinically stable; Annual re-assessment with the same instrument, or more often as needed to (1) detect acute disease activity; (2) assess for treatment effects (e.g. starting/changing a disease-modifying therapy) or for relapse recovery; (3) evaluate progression of cognitive impairment; and/or (4) screen for new-onset cognitive problems. For adults (18+ years): more comprehensive assessment for anyone who tests positive on initial cognitive screening or demonstrates significant cognitive decline, especially if there are concerns about comorbidities or the individual is applying for disability due to cognitive impairment. For children (<18 years): neuropsychological evaluation for any unexplained change in school functioning (academic or behavioral). Remedial interventions/accommodations for adults and children to improve functioning at home, work, or school.

Project Extension for Community Healthcare Outcomes (ECHO) in Multiple Sclerosis: Increasing Clinician Capacity.

BACKGROUND: A pilot program using the Project Extension for Community Healthcare Outcomes (ECHO) model was conducted for multiple sclerosis (MS) clinicians in the Pacific Northwest. The pilot was a collaboration between the National Multiple Sclerosis Society and faculty at the University of Washington. The goal was to determine the feasibility of using this telehealth model to increase the capacity and capability of clinicians in rural areas to treat people with MS. METHODS: Thirteen practice sites with 24 clinicians were recruited to participate. Videoconferencing was used to conduct weekly sessions consisting of brief didactics followed by case consultations. RESULTS: Most participants completing the outcome survey (10 of 15) indicated that they were more confident in treating patients with MS. They were satisfied with the training, felt better able to care for their patients, and had made changes in their treatment based on the case consultations and didactic content. They valued the case studies and case-based didactics and learned from each other as well as from the team. CONCLUSIONS: The pilot MS Project ECHO warrants further investigation regarding its potential effect on access to MS care delivery for underserved populations.

Evidence-based guideline: assessment and management of psychiatric disorders in individuals with MS: report of the Guideline Development Subcommittee of the American Academy of Neurology.

OBJECTIVE: To make evidence-based recommendations for screening, diagnosing, and treating psychiatric disorders in individuals with multiple sclerosis (MS). METHODS: We reviewed the literature (1950 to August 2011) and evaluated the available evidence. RESULTS AND RECOMMENDATIONS: Clinicians may consider using the Center for Neurologic Study Emotional Lability Scale to screen for pseudobulbar affect (Level C). Clinicians may consider the Beck Depression Inventory and a 2-question tool to screen for depressive disorders and the General Health Questionnaire to screen for broadly defined emotional disturbances (Level C). Evidence is insufficient to support/refute the use of other screening tools, the possibility that somatic/neurovegetative symptoms affect these tools' accuracy, or the use of diagnostic instruments or clinical evaluation procedures for identifying psychiatric disorders in MS (Level U). Clinicians may consider a telephone-administered cognitive behavioral therapy program for treating depressive symptoms (Level C). Although pharmacologic and nonpharmacologic therapies are widely used to treat depressive and anxiety disorders in individuals with MS, evidence is insufficient to support/refute the use of the antidepressants and individual and group therapies reviewed herein (Level U). For pseudobulbar affect, a combination of dextromethorphan and quinidine may be considered (Level C). Evidence is insufficient to determine the psychiatric effects in individuals with MS of disease-modifying and symptomatic therapies and corticosteroids; risk factors for suicide; and treatment of psychotic disorders (Level U). Research is needed on the effectiveness in individuals with MS of pharmacologic and nonpharmacologic treatments frequently used in the non-MS population.

Meeting the needs of people with primary progressive multiple sclerosis, their families, and the health-care community.

Although major advances have been made in delaying or preventing progression for the relapsing forms of multiple sclerosis (MS), little progress has been made to date in disease management for primary progressive MS (PPMS). Treatment strategies are largely focused on managing the symptoms of the disease and providing counseling and other forms of psychosocial support. The nurse plays a major role in managing these patients. This article summarizes a collaborative effort by the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America to analyze the needs of this patient population and respond with programs that will meet those needs. This approach to developing a needs assessment is broadly applicable to other patient populations.

The emotional and psychological impact of multiple sclerosis relapses.

Acute relapses of multiple sclerosis (MS) are experienced as crises that disrupt the status quo for individuals with MS and their families. These unpredictable--and always unexpected--events elicit strong reactions, including grief, anxiety, anger, and guilt, as people struggle to understand why they occur. Although early relapses are a signal for most MS specialists to recommend treatment with one of the approved disease-modifying therapies, the remissions that follow contribute to patient and family denial about the realities of the disease, making it difficult for patients to begin and to adhere to ongoing treatment. Each ensuing attack confronts this denial, forcing patients and families to acknowledge the MS diagnosis and begin adapting to the demands of the illness in their daily lives. This paper discusses the meaning attributed by individuals and families to relapses leading to the MS diagnosis and the recommendation for disease-modifying therapy, the adjustments that are made by patients and their families to residual deficits following acute episodes, and suggestions for clinicians on how they might facilitate the adjustment process.