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Managing Cognitive Impairment in People with MS: New Recommendations for Healthcare Professionals

October 10, 2018

  • A multidisciplinary team of experts in cognitive impairment (clinicians, researchers and people with MS), convened by the National MS Society’s National Medical Advisory Committee, has published recommendations based on published literature and professional expertise for the optimal screening, monitoring, and management of cognitive changes in people with MS.
  • Based on the current evidence, the recommendations (see details below) provide ways to screen for cognitive impairment in people with MS and track the development or worsening of impairments in adults and children, as well as information on when and how to intervene to address these changes.
  • The Society is initiating steps to address the barriers to care, including strategies to: increase awareness of cognitive impairment among people with MS and healthcare providers, increase early screening and ongoing monitoring, and increase the numbers of clinicians who are trained to do screening, monitoring and rehabilitation. 
  • The recommendations were published online first, open access, in Multiple Sclerosis Journal. (First Published October 10, 2018)
Background: The National MS Society convened experts in cognitive impairment – including clinicians, researchers, and 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 existing barriers to optimal care. The literature view revealed important findings, including the following:
  • Cognitive function is still not openly discussed, routinely assessed or optimally treated.
  • Cognitive impairment occurs in all MS disease courses, including clinically isolated syndrome (CIS -- a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination), with a prevalence of 34-65 percent in adults and approximately 33 percent in children.
  • Cognitive symptoms, which can impact every aspect of daily life, worsen over time. The prevalence and severity of cognitive impairment are greatest in secondary progressive and primary progressive MS.  
  • Care partners of people with MS experience high levels of distress related to their partners’ cognitive impairment, beyond that related to their physical symptoms.
Recommendations for the management of cognitive symptoms (endorsed by the Consortium of MS Centers and the International Multiple Sclerosis Cognition Society)
  • Increased professional and patient awareness and education about the prevalence, impact and appropriate management of cognitive symptoms 
  • For adults and children 8 years of age and above with clinical or 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: (a) detect acute disease activity; (b) assess for treatment effects (e.g., when starting/changing a disease-modifying therapy) or for relapse recovery; (c) evaluate progression of cognitive impairment; and/or (d) screen for new-onset cognitive problems
  • Depression screening at least yearly with the Beck Depression Inventory – Fast Screen or the Hospital Anxiety and Depression Scale for adults, or an age-appropriate screening tool for children, is recommended to identify mood changes that may be impacting cognition.
  • For adults, 18 years of age and above, 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 below 18 years of age, 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, school
Various types of treatment have been studied to address cognitive impairment in MS, including cognitive remediation, exercise and medication management. Recent findings highlight the positive impact of cognitive remediation and suggest a potential benefit of some exercise strategies. The evidence for pharmacologic interventions remains very limited.
Individuals who require rehabilitation to address cognitive changes impacting their    functioning at home or at work should be referred to a specialist:
  • The optimal referral is to a specialist in MS neuropsychological rehabilitation (neuropsychologist, speech/language pathologist or occupational therapist).
  • The second option is referral to a neuropsychological rehabilitation specialist without MS-specific expertise.
  • The third option is referral to a behavioral health specialist who is willing to learn about MS and cognition. 
Fatigue, sleep problems, mood, and medications a person is taking can all impact cognition. Optimal management of these factors can help improve cognitive functioning.  
Strategies to address the barriers to optimal care
Barriers to optimal care include:
  • Insufficient knowledge on the part of people with MS, family members and healthcare professionals regarding the prevalence and impact of cognitive dysfunction, and the availability of validated assessment tools and remediation strategies
  • A reluctance to discuss cognitive symptoms on part of clinicians (who feel they do not have the time of expertise to address cognitive care) and patients (who feel embarrassed or are afraid to report changes that might threaten their employment, custody of children, license to drive, and/or independence)
  • Insufficient numbers of trained clinicians to do screening, testing and remediation, and inadequate reimbursement for screening and treatment.
The Society has begun to implement a series of steps to address the barriers to care, including strategies to: increase awareness of cognitive impairment among people affected by MS and healthcare providers; increase early screening and ongoing monitoring, and increase the numbers of healthcare professionals trained to provide cognitive screening, monitoring and remediation.

Read More
Talking about: Cognitive Dysfunction (.pdf)

About Multiple Sclerosis

Multiple sclerosis is an unpredictable disease of the central nervous system. Currently there is no cure. Symptoms vary from person to person and may include disabling fatigue, mobility challenges, cognitive changes, and vision issues. An estimated 1 million people live with MS in the United States. Early diagnosis and treatment are critical to minimize disability. Significant progress is being made to achieve a world free of MS.

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