Research-to-Practice Gaps in Multiple Sclerosis Care for Patients with Subjective Cognitive, Mental Health, and Psychosocial Concerns in a Canadian Center

Physical outcomes in people with multiple sclerosis (MS) contribute less to health-related quality of life (HRQOL) than do cognitive, mental health, and psychosocial variables.¹ Depression is the strongest predictor of low HRQOL, followed by cognitive impairment, pain, lack of support/autonomy, fatigue, anxiety, and rapid disease course.² It can be difficult for patients to communicate these needs during routine care and obtain treatment.³

Cognitive impairment (present in up to 70% of people with MS⁴) leads to a greater likelihood of psychosocial challenges^{5 6} and disability.⁷ Methods exist to assess cognition when neuropsychological services are unavailable. The Brief International Cognitive Assessment for MS (BICAMS) can be administered by nonspecialized staff.⁸–¹³ Despite this, cognitive issues are not adequately addressed, as traditional neurologic practice dominates over interdisciplinary approaches.^{2 7 14}

Up to 50% of people with MS experience depression.¹⁴–¹⁶ Other mental health concerns (anxiety, psychosis, bipolar disorder, suicide, etc¹⁷–¹⁹) are also prevalent and negatively affect HRQOL.^{15 19 20} Identifying mental health issues is complicated given overlap with MS symptoms,²¹ but validated questionnaires can help (eg, the Hospital Anxiety and Depression Scale [HADS]²² and the Patient Health Questionnaire-9 [PHQ-9]²³). Nonetheless, these measures are not always used,²⁴ and mental health issues remain undertreated.^{25 26}

Psychosocial challenges (eg, unemployment, interpersonal difficulties) develop because of physical, cognitive, or mental health symptoms. Seventy-one percent to 85% of those with progressive MS and 46% to 66% of those with relapsing-remitting MS are unemployed.^{27 28} Severe disability and cognitive impairment predict loss of employment, decline in living standards, and activity withdrawal.²⁹ Patients with comorbidities have a greater likelihood of low income and change of relationship status.³⁰ No psychometric instruments target psychosocial concerns, but conversation can. Given that aspects of HRQOL predict disability over time, addressing concerns could affect disease outcome.³¹

Cognitive, mental health, and psychosocial concerns may not be addressed in routine care^{2 4 14 21 25} (standard-of-care, regularly scheduled neurology appointments). The Consortium of Multiple Sclerosis Centers (CMSC) recommends³² that all people with MS have access to collaborative, interdisciplinary care providing information, advice, and counseling and promoting wellness-focused activities. The CMSC recommends assessing all people with MS to determine HRQOL, social supports, financial resources, and cognitive, emotional, and educational needs to inform a comprehensive care plan. To our knowledge, only two studies examine how these issues are addressed in routine care. In a survey of CMSC member health professionals, 93% reported routinely assessing for depression, and half reported offering treatment.²⁴ Most surveyed members reported asking a general question about depression, and 38% reported using a validated measure. Less than 4% of invitees completed this survey, so these numbers do not reflect the typical MS center. In an earlier survey,³³ 49% of CMSC practitioners did not use formal cognitive assessment and instead relied on observation of overt signs of cognitive impairment, which is known to be inadequate.¹⁴ No survey looked at psychosocial concerns. Surveys relied on retrospective estimates, which may be inaccurate. We undertook a medical record review of patients followed at the Ottawa Hospital MS Clinic with the goal of answering the following questions: 1) What proportion of people with MS in the clinic present with cognitive, mental health, and psychosocial concerns? 2) When concerns are identified, what proportion of cases receive a referral to associated services offered? 3) Do people with cognitive/mental health/psychosocial concerns access MS clinic services more often than those without?

Methods

Approval for the study was provided by the Ottawa Health Sciences Network Research Ethics Board. One hundred randomly selected medical records documenting at least one visit to the Ottawa Hospital MS Clinic from July 1, 2015, to June 30, 2016, were reviewed. Approximately 3000 medical records were assigned a unique number; 100 were randomly selected using computer-generated pseudorandom numbers. The first 100 eligible and accessible medical records were included.

Paper and electronic records yielded demographic data, disease characteristics, visit records, communication between patients and staff, treatment history, and information on identification, assessment, and treatment of cognitive, mental health, and psychosocial concerns. Visit notes contained documentation of subjective concerns (eg, difficulty concentrating at work) and recommended treatments. One reviewer categorized each concern as being related to mental health (ie, complaints of anxiety, depression, or irritability), cognition (ie, difficulties with attention, memory), or psychosocial issues (ie, difficulties related to relationships, finances, or work). Neither fatigue nor insomnia was counted. Because of the potential for use as treatment for pain, etc, a record of antidepressant medication use was not counted as evidence of a concern.

IBM SPSS Statistics for Windows, version 24.0 (IBM Corp, Armonk, NY) was used to calculate descriptive statistics on demographic data and number of clinic contacts. Frequencies were calculated regarding proportion of people with MS with concerns, source/nature of concerns, and rate/nature of services/treatments offered. Nonparametric independent-samples tests determined whether demographic factors affected offer of treatment. Independent-samples Mann-Whitney U tests were used to compare the mean age of patients with concerns who received a treatment offer or not. For other demographics, independent-samples χ² tests were used to compare frequencies. To determine whether people with MS with identified concerns access clinic services more often than those without, independent-samples Mann-Whitney U tests were used to compare the mean number of clinic contacts.

Results

Of the 100 randomly selected medical records, 66% were for female patients; mean ± SD age was 48.68 ± 12.45 years; and 55 had relapsing-remitting MS, 17 had secondary progressive MS, 8 had primary progressive MS, and 20 had other or subtype not indicated. The mean ± SD time since diagnosis was 12.46 ± 9.74 years; the mean ± SD Expanded Disability Status Scale score was 2.68 ± 2.25. See Table 1 for additional patient characteristics. One hundred patients had 142 visits and 89 phone/e-mail contacts (231 total contacts).

Patient characteristics reported for available cases and for total sample of 100

Twenty-five percent of patients had at least one subjective cognitive, mental health, or psychosocial concern. Of these patients, 48% experienced one, 32% two, and 20% three types. Disease duration (ie, time since diagnosis) or disability level did not influence whether concerns were identified.

Seventeen percent of patients presented with at least one cognitive concern (Figure 1), which is significantly less than the expected 40% prevalence in people with MS.^{4 34 35} There was no record of any validated cognitive screening. Four patients underwent previous neuropsychological testing.

Frequencies of cognitive concerns by type

Fifteen percent of patients reported a mental health concern; 15% had at least one psychiatric diagnosis (Figure 2). This rate is significantly less than the expected 50% prevalence in people with MS (χ² = 49.00, P < .001).³⁶

Frequencies of confirmed psychiatric diagnoses

Eleven percent of participants reported at least one psychosocial concern (Figure 3). Although numbers vary when estimating rates of unemployment (46%–85%)^{27 28} and change of relationship status (7%–33%),^{27 28} current rates of psychosocial concerns were lower than expected.

Frequencies of psychosocial concerns by type

People with MS were more likely than neurologists to bring up nonphysical concerns (Table 2). Neurologists were more likely to raise mental health concerns than cognitive concerns. There was no indication that neurologists raised psychosocial concerns.

Sources of concerns raised during multiple sclerosis clinic routine visits

Of the 25 people with MS with at least one concern, treatment was suggested for 13 (52%): three of 17 for cognitive, nine of 15 for mental health, and three of 11 for psychosocial concerns. No evidence of referrals to services was found. The most common treatment offered was antidepressant agents (30.8%), then counseling (23.1%) and follow-up with the family doctor (23.1%). Follow-up with psychiatry (15.4%) or community-based support (eg, the MS Society) (7.7%) was also recommended. Demographic factors did not influence whether treatment was offered (Table 3).

Comparison of demographic variables for patients with multiple sclerosis offered versus not offered treatment when presenting with a cognitive, mental health, or psychosocial concern

Patients with one or more concerns (median contacts, 2.0) accessed MS clinic services significantly more often than did patients without concerns (median contacts, 1.0 [U = 647.5, P = .011]).

Discussion

Based on a review of 100 randomly selected medical records in our MS clinic, approximately one-quarter of the medical records documented at least one cognitive, mental health, or psychosocial concern—significantly fewer than expected. There was little evidence of validated assessments for cognitive or mental health concerns, and only half of the patients were offered treatment. These findings suggest that current practices are not adequately addressing important issues, and many patients are not receiving optimal care.

People with MS are likely experiencing concerns near expected rates, but issues are not identified. The discrepancy between reported and expected frequencies may be due to overreliance on self-disclosure. No evidence suggested that staff used screening measures. Reliance on patients to disclose can prevent identification of cognitive impairment because self-report is not an appropriate way of assessing cognitive function. People are often inaccurate at predicting their cognition (eg, anosognosia, mood).^{37 38} People with MS may remain silent due to stigma,³⁹ especially those with mental health or psychosocial concerns,⁴⁰ who may choose not to disclose.⁴¹ They may also think that such concerns are not relevant or may not see how issues affect symptoms. Barriers lengthen the time that mental health concerns go untreated, which is associated with a negative prognosis.³⁹ Validated screening tools should be adopted to better identify cognitive^{9 42} and mental health concerns.^{22 23}

The low identification rate may be because clinicians elect not to assess concerns, as has been reported anecdotally by clinic staff. They may not feel qualified to treat issues or may not be familiar with service navigation (particularly when social workers are not available, as was the case during review), or barriers to treatment access such as policies and cost may exist.³

For patients ineligible for subsidized services, private services are typically available. However, cost is often a barrier. The patients with MS in our study were more likely to be offered treatment for mental health concerns compared with cognitive concerns, possibly due to familiarity or availability of pharmacotherapy and psychotherapy compared with occupational therapy and cognitive rehabilitation. Few patients had previous neuropsychological testing, which can be costly. Clinic staff may not be aware of patient issues and current treatments without communications from community-based health professionals. This review did not yield evidence of outside care. Possibly, some patients had concerns addressed outside the MS clinic, without effective communication of this. Although several patients were recommended to access community psychologists, there was no evidence that this was pursued. Providing referrals could increase adherence, communicate treatment importance, and facilitate interprofessional communication.

Ideally, an interdisciplinary team³² could be established to further reduce barriers. The CMSC notes that this team consists of various professionals (neurologists, other specialized physicians, nurses, social workers, physiotherapists, occupational therapists, speech-language pathologists, neuropsychologists, etc).³² Interdisciplinary services reduce demand on overburdened neurologists and nurses.³² Such a care team is efficacious in other areas (eg, chronic pain,⁴³ stroke,⁴⁴ Parkinson disease⁴⁵), improving care and quality of life for patients and families.⁴⁵ Interdisciplinary MS care centers are more likely to use validated screening measures and offer treatment for psychological concerns.²⁴

Patients with MS with at least one concern accessed clinic services at almost double the rate of those without concerns, perhaps because they are attempting unsuccessfully to have needs met. The cost of psychotherapy can be less than that of pharmacotherapy or the absence of psychological treatment—by reducing visits, reducing need for pharmacotherapy, improving outcomes, and reducing disability-related expenses.^{46 47}

Research-to-practice gaps exist due to external, organizational, and individual factors (eg, lack of funding, political will, or administrative resources; lack of communication between researchers and clinicians; lack of staff support).^{48 49} Clinicians may underestimate the impact of cognitive, mental health, and psychosocial issues compared with physical symptoms,^{1 50} and the introduction of new policies can be a complex process, requiring significant commitment and allocation of scarce resources.⁴⁹

Study limitations include the inability to determine whether concerns were clinically significant. Because formal assessments were not performed, identification does not reflect diagnostic standards. However, including subjective concerns correctly reflected the practice of MS clinic staff in determining which patients might warrant attention and reflects the widespread practice of not using validated measures.^{24 33} Regardless, this approach produced far fewer concerns than expected in the literature, which supports the observation that concerns are being underidentified in routine care. Rates of cognitive, mental health, and psychosocial concerns may have been greater with a longer review period. Finally, data may have been richer had a larger sample of medical records been reviewed and more sites included. Future research could review larger samples to determine whether demographic factors influence identification and treatment rates, and multiple centers could be reviewed for greater generalizability and for assessing whether care improves after adoption of the interdisciplinary model.

The present study provides an objective look at current research-to-practice gaps in this center regarding people with MS who had cognitive, mental health, and psychosocial concerns. Solutions to this gap include adopting validated screening measures and increasing communication between providers. The ideal scenario is an interdisciplinary model of care as recommended by best practice guidelines.³²

PRACTICE POINTS

Cognitive, mental health, and psychosocial concerns are highly prevalent in people with MS and have a significant effect on autonomy, well-being, and disease outcomes.

A variety of tools can quickly and easily identify these concerns in standard practice, but these may be underused, leading to issues not being adequately identified or addressed during routine MS care visits.

Research-to-practice gaps can be addressed by using screening tools, adopting an interdisciplinary model of care, and improving communication between people with MS and their care providers.