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.

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.