Managing Cognitive Dysfunction in Multiple Sclerosis: A Snapshot of Changes in Screening, Assessment, and Treatment Practices

Given the prevalence¹  and impact^2–4  of cognitive dysfunction on individuals with multiple sclerosis (MS), early baseline screening with follow-up annual screening and a comprehensive evaluation (eg, a neuropsychological assessment) if the screening is positive is recommended.⁵  In lieu of comprehensive assessments, brief cognitive rests may also be used to monitor for clinical status changes potentially associated with relapse.⁶  Treating cognitive dysfunction has historically been problematic, with inconsistent evidence on the benefits of pharmacologic and nonpharmacologic interventions.⁷ 

In 2010, Consortium of Multiple Sclerosis Centers (CMSC) members (n = 207) completed a survey about their cognitive-related practices.⁸  Approximately 49% of respondents had no formal screening procedures but were attuned to the symptoms and signs of cognitive impairment, and another 3% had no formal procedures and gave little attention to these issues.⁸  Approximately 26% of respondents indicated that they refer 21% to 40% of their patients with suspected cognitive impairment for further evaluation, and another 25% said they refer 10% or fewer.⁸  Regarding treatments, 58% of respondents reported that they would prescribe a medication and 31% said they would recommend cognitive remediation.⁸ 

During the past decade, several advancements have been made, including improved screening/monitoring batteries such as the Brief International Cognitive Assessment for MS (BICAMS),⁹  evidence of the benefit of cognitive-focused interventions,¹⁰  and professional recommendations for screening and assessment.⁵  Furthermore, given the impact of COVID-19 on health care and telehealth use, COVID-19 may have influenced the management of cognitive dysfunction. As such, it was deemed time to reevaluate practice patterns for changes. It was hypothesized that clinicians would endorse more screenings and referrals for neuropsychological assessments and cognitive remediation, given the increased emphasis on managing MS-related cognitive problems.

As in 2010,⁸  participants were recruited through the CMSC and were eligible if they identified as providers who see individuals with MS. All the participants were in the United States or Canada. An advertisement was placed in the CMSC’s January 2020 e-newsletter, and the CMSC administrative staff sent emails to 2223 members in February and August 2020. Responses were collected via an online survey tool (Qualtrics) through October 2020. The study was approved by the Trinity Health Of New England institutional review board. A waiver of informed consent was obtained, and participants received an electronic information sheet.

The items from the 2010 survey,⁸  in which participants were asked to describe their clinical practices, their procedures for screening and further evaluation (including their experiences working with neuropsychologists), and their treatment recommendations, were replicated. Participants were asked whether their practice had changed in terms of the number of cognitive screenings, cognition-related prescriptions, and referrals for neuropsychological assessments and cognitive remediation in the past 5 years. This time frame was chosen because some participants may not have been in the same practice for the past 10 years, a longer time frame may have excluded newer clinicians, and there was a greater risk of recall errors with a longer recall period. Because a third recruitment effort was undertaken after the first wave of COVID-19, these participants were asked whether COVID-19 had affected their screening practices and referrals for neuropsychological assessment and cognitive remediation.

Frequency analyses were ran using SPSS Statistics for Windows, version 26.0 (IBM). The χ² and Fisher exact tests were computed to compare the frequencies of responses between the 2010 and 2020 surveys and to determine any differences in practices between physicians and nonphysicians.

Fifty-six individuals responded to the survey, which was 27.1% of the 2010 survey sample size. Details about participants’ professions and practices are in TABLE S1, which is published in the online version of this article at ijmsc.org.

During the past 5 years, 68.8% of respondents reported an increase in cognitive screenings, with another 29.2% endorsing no changes. Screening procedures and comparisons are in TABLE 1. In addition, physicians in the current sample were more likely than nonphysicians to have no formal procedures but to be attuned to the symptoms (88.9% vs 42.1%; P = .001).

More than 14% of respondents endorsed using a single measure, such as the Symbol Digit Modalities Test (n = 3) or the Montreal Cognitive Assessment (n = 2). Several participants reported using batteries, including validated batteries, such as the BICAMS (14.3%), and batteries with the measures selected based on patients’ needs (32.1%).

Nearly 68% of respondents provided an estimate of how many patients have cognitive problems (FIGURE 1). Compared with 2010, there was a trend toward more patients screening positive, with fewer participants endorsing that 1% to 40% of their patients present with cognitive problems (P = .064).

Approximately 68% of respondents provided an estimate of how many patients they send for further evaluation (FIGURE 2). Compared with 2010, there was a significant reduction in the percentage of clinicians referring 10% or fewer of their patients (P = .006). More than 57% of respondents reported referring to an in-house neuropsychologist or psychologist; 17.9% to an outside neuropsychologist or psychologist; 50.0% to another professional (eg, psychiatrist, occupational therapist, or speech therapist); and 19.6% to in-house medical, nursing, or other staff. Compared with 2010, a greater percentage of participants endorsed referring to other professionals (50.0% vs 15.9%; P < .001), and there was a trend toward a greater percentage using in-house neuropsychologists or psychologists (57.1% vs 43.5%; P = .069).

More than 89% of respondents reported having access to an MS-knowledgeable neuropsychologist, similar to the 2010 survey (81.6%; P = .174). Of the participants who had access to a neuropsychologist (n = 50), 60% noted they were in the same practice or clinic. Most participants indicated that the neuropsychologist had expertise in MS (62.5%) and was board certified (70.0%). During the past 5 years, 56.3% of respondents indicated an increase in referrals for neuropsychological assessments and another 41.7% reported no changes.

Participants who refer to a neuropsychologist were asked to rate their experience (FIGURE S1). Compared with 2010, participants had similar ratings for the time to get a report (P = .466), clarity and readability of the report (P = .183), and quality of the recommendations (P = .211). In terms of the time to get an appointment, a lower percentage rated it as “good” in 2020 compared with 2010 (P = .006).

More than 39% of respondents reported that their practice would consider prescribing a medication, which is a decrease from 2010 (58.5%; P = .001). Additionally, 20% of participants endorsed a decrease in prescriptions during the past 5 years and 45% indicated no changes. Among those who reported prescribing (n = 22), the most common medications were antifatigue agents (86.4%), followed by stimulants (77.3%), disease-modifying therapies (45.5%), dopamine agonist antidepressants (40.9%), cholinesterase inhibitors (40.9%), and glutamate modifiers (31.8%). Compared with 2010, a lower percentage of participants endorsed prescribing cholinesterase inhibitors (40.9% vs 83.5%; P < .001), with trends toward fewer glutamate modifier prescriptions (31.8% vs 52.1%; P = .081) and more stimulant prescriptions (77.3% vs 56.2%; P = .064).

Cognitive remediation was one of the most common treatment-related referrals, as indicated by 60.7% of participants, which is an increase from 2010 (31.3%; P < .001). Furthermore, 46.2% reported an increase in referrals during the past 5 years, with 51.3% noting no change. Besides cognitive remediation and other referrals for occupational therapy (8.9%) and speech therapy (5.4%), other endorsed treatment referrals included psychological services (eg, psychotherapy for depression; 73.2%), sleep evaluations (48.2%), neuropsychological counseling (44.6%), exercise training (44.6%), vocational rehabilitation (30.4%), and neurology (16.1%).

Participants noted several barriers due to COVID-19. With cognitive screenings (n = 15), 60% noted a negative impact because of issues such as less face-to-face contact, virtual visits being less convenient for screenings, and decreased access to neuropsychological services for follow-ups. More than 46% of the cohort (n = 15) reported a negative effect on their referrals for neuropsychological assessments, citing limited access to services, difficulty scheduling appointments, and increased wait times. Regarding referrals for cognitive remediation (n = 12), 33.3% noted a negative impact because of no current face-to-face services and longer wait times.

During the past 10 years, there seems to be a greater recognition of the need to manage cognitive dysfunction in MS. Approximately 69% of respondents endorsed an increase in screenings in the past 5 years, which is likely contributing to the observed trend of more patients screening positive than in 2010. Although having no formal procedures but being attuned to the symptoms and signs unfortunately remained the most frequently endorsed screening procedure, especially among physicians, there was a significant increase in the percentage of clinicians using conventional person-administered measures. In particular, the Symbol Digit Modalities Test has been recommended as a screening measure for MS-related cognitive dysfunction, as a standalone measure,^5,11,12  or as part of a battery.^9,13  Note that although the use of standardized cognitive screenings is low among neurologists,¹⁴  the clinical interview alone has not been shown to accurately detect individuals with cognitive impairment.¹⁵ 

Clinicians indicated an increase in patients receiving further evaluation for suspected cognitive problems. Besides more referrals for neuropsychological assessment, there was a significant rise in other referrals. Although this may be partly due to participants being able to select multiple options, it may also reflect the importance of a multidisciplinary approach for managing cognitive dysfunction. Although most participants indicated having access to a neuropsychologist, other practices may not, or the patient may face barriers (eg, not covered by their insurance). In terms of working with a neuropsychologist, several aspects were rated as “excellent” or “good,” such as the clarity and readability of the report (87.5%) and the quality of the recommendations (80.9%). However, there seems to be dissatisfaction with the time to get an appointment, which was rated as “fair” or “poor” by 62.2% of respondents, with several participants noting long waits, especially with COVID-19. This may also contribute to more providers referring their patients to other professionals.

There has been a shift since 2010 in treatment practices, with fewer prescriptions for cognition-related medications and more referrals for cognitive remediation. This may suggest that clinical practice is beginning to coincide with the literature, which shows insufficient evidence for pharmacologic treatment¹⁶  but growing support for the use of cognitive-focused interventions.¹⁰  However, additional research is needed to increase clinicians’ confidence to make these treatment recommendations.⁷ 

COVID-19 seems to have had a negative effect on cognition-related services, primarily because of decreased face-to-face services and reduced access to services. Although remote-based testing has been shown to be feasible in MS,^17–20  and there is growing utilization of mobile health tools for cognitive evaluations and training,²¹  clinicians and patients may experience barriers that affect their ease of providing or using cognition-related telehealth services, such as translating services to a digital platform, digital literacy, and limited cellular network. Besides ensuring the assessment is being performed in a secure location with a strong internet connection, clinicians may consider brief trainings with the device if the patient is unfamiliar with it and making adjustments to improve ease of use (eg, larger text if there are visual impairments).²¹ 

Although this study has several strengths, such as the inclusion of multiple professions, an evaluation of changes during the past decade, and the influence of COVID-19 on services, there are limitations to consider. Despite multiple recruitment efforts, only 56 clinicians participated, representing slightly more than a quarter of the sample size of the 2010 survey⁸  and less than 3% of the current CMSC membership. Recruiting at the CMSC annual meeting or offering an incentive for participation may have increased the membership’s awareness and involvement in the study. Participants may be more involved in the management of cognitive dysfunction and thus more motivated to participate. Therefore, these results should be viewed as a snapshot into current practices and may not be generalizable to clinicians in non–MS-specific practices or outside of the United States and Canada. Future research may consider including follow-up questions to elucidate some of the findings, such as whether physicians’ higher rate of no formal procedures for cognitive screening are because they are delegated to other colleagues. Because both surveys were anonymous, they could not be linked, and individual changes could not be measured. Finally, because these are retrospective estimates of referrals, it remains unclear how many individuals with MS are receiving these services. There has been 1 study examining utilization of neuropsychological services,²²  but this was limited to veterans in the US Department of Veterans Affairs system, who served during the Iraq and Afghanistan conflicts.

Overall, there has been increased attention to MS-related cognitive dysfunction in clinical practice, with clinicians endorsing increases in cognitive screenings and referrals for neuropsychological assessments and cognitive remediation. Besides highlighting evidence-based treatments, there is a continued need to use validated screening measures, routinely monitor for cognitive problems, and refer individuals with possible cognitive dysfunction for further evaluation.

The authors thank June Halper and her team for assistance in distributing the survey to CMSC members.