Improving the quality of mental health care in Multiple Sclerosis.
ABSTRACT An exploratory study of mental health treatment of people with multiple sclerosis (MS) to identify hypotheses for future testing.
We mailed surveys to 8750 MS patients in four geographically distributed MS Centers; 3384 completed the survey. We used a modified version of the Experience of Care and Health Outcome Survey™ to assess mental health problems and experiences with mental health treatment and the Kessler 6 scale to identify serious mental illness.
In the year before the survey, sixty percent of patients reported mental health problems. Less than one half of these individuals received mental health treatment, either from their MS care provider or a mental health professional in the MS Center or the community. Patients generally had good mental health treatment experiences, and felt helped by their treatment, but gave less positive reports about how long it took to be seen, receiving information about treatment options and managing their condition, and phone contact. Care experiences were more positive among those who received care from mental health professionals (compared to medical care providers) and among those receiving mental health treatment in the MS Center (compared to in the community).
The unmet need for mental health treatment for people with MS is high. Options for MS care providers to help meet this need include hiring mental health professionals to provide on-site treatment; providing mental health treatment themselves; and referring patients to mental health professionals in the community and collaborating in integrated care. This study provided preliminary data for two related hypotheses that warrant further testing: MS patients will receive better mental health care if their mental health treatment is co-located with their MS care and if it is provided by mental health professionals.
- SourceAvailable from: Claudia H Marck[Show abstract] [Hide abstract]
ABSTRACT: Background Depression is the most common co-morbidity for people with Multiple Sclerosis (MS); irrespective of disease severity, depression has the greatest impact on quality of life. An emerging paradigm in the treatment of depression is lifestyle medicine. There is significant potential to prevent and treat depression through modification of lifestyle risk factors for people with MS. This study sought to understand the association between lifestyle risk factors, medication and depression risk through the analysis of self-reported data from a large international sample of people with MS.Methods This cross-sectional analysis recruited a total of 2459 participants via Web 2.0 platforms. Survey data included socio-demographics; a range of lifestyle risk factors; medication; disease variables and depression risk using the Patient Health Questionnaire-2 (PHQ-2).ResultsIn total approximately one fifth (19.3%) of our sample screened positive for depression (PHQ-2 score ¿3). Several demographic factors were significantly associated with this depression risk in bivariate analysis. Regression analyses showed that poor diet, low levels of exercise, obesity, smoking, marked social isolation and taking interferon were associated with greater depression risk. Participants who supplemented with omega 3s, particularly flaxseed oil, had frequent fish consumption, supplemented with vitamin D, meditated, and had moderate alcohol consumption had significantly reduced depression risk.Conclusions This study demonstrates a significant association between modifiable lifestyle factors and depression risk. Planned longitudinal follow up may clarify causality. Clinicians and people with MS should be aware of the wide range of modifiable lifestyle factors that may reduce depression risk as part of a comprehensive secondary and tertiary preventive medical approach to managing MS.BMC Psychiatry 12/2014; 14(1):327. · 2.24 Impact Factor
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ABSTRACT: The objective was to obtain multiple sclerosis (MS) patients' report on their experience receiving mental health care. We convened focus groups at four MS clinical care centers to identify the aspects of mental health care that were important to people with MS. All patients (n=54) had received mental health care in the past year. Data were analyzed by coding comments under specific themes. Patients wanted prompt intervention after diagnosis and ongoing screening for mental health problems; they prefer providers with knowledge about MS and experience working with people with MS; they appreciated being able to access mental health services that were on-site at their MS center and noted the benefit of inclusion of family members in treatment. Mental health care should be provided promptly after diagnosis, with regular screening and interventions that include family members as indicated thereafter. Mental health providers should be familiar with MS, collaborate with neurologic care providers and provide services on-site at MS centers.General hospital psychiatry 05/2012; 34(6):604-10. · 2.67 Impact Factor
Improving the quality of mental health care in Multiple Sclerosis☆
S.L. Mindena, L. Dingb,1, P.D. Clearyc, D. Frankeld, B.I. Glanze, B.C. Healye, D.J. Rintelle,⁎
aDepartment of Psychiatry, Brigham and Women's Hospital, Boston, MA 02115 USA
bDepartment of Health Care Policy, Harvard Medical School, Boston, MA 02115 USA
cYale School of Public Health, Yale School of Medicine, New Haven, CT 06520 USA
dNational Multiple Sclerosis Society, New York, NY USA
ePartners MS Center, Brigham and Women's Hospital, Boston, MA 02445 USA
a b s t r a c ta r t i c l e i n f o
Received 28 February 2013
Received in revised form 22 July 2013
Accepted 14 August 2013
Available online 30 August 2013
Mental health problems
Patient care experience
Mental health treatment
Mental health service utilization
Objective: An exploratorystudy of mental health treatmentofpeople with multiple sclerosis (MS)to identifyhy-
potheses for future testing.
Methods:Wemailedsurveysto8750MS patients infour geographically distributedMSCenters;3384completed
thesurvey.We used a modifiedversionofthe Experience of Care and Health Outcome Survey™ to assess mental
health problemsandexperienceswith mentalhealthtreatmentandthe Kessler6 scaleto identifyserious mental
Results: In the year before the survey, sixty percent of patients reported mental health problems. Less than one
half of these individuals received mental health treatment, either from their MS care provider or a mental health
professional in the MS Center or the community. Patients generally had good mental health treatment experi-
ences, and felthelpedby their treatment, butgaveless positive reports about howlongittook to be seen, receiv-
ing information about treatment options and managing their condition, and phone contact. Care experiences
were more positive among those who received care from mental health professionals (compared to medical
care providers) and among those receiving mental health treatment in the MS Center (compared to in the com-
Conclusions: The unmet need for mental health treatment for people with MS is high. Options for MS care pro-
viders to help meet this need include hiring mental health professionals to provide on-site treatment; providing
collaborating in integrated care. This study provided preliminary data for two related hypotheses that warrant
further testing: MS patients will receive better mental health care if their mental health treatment is co-
located with their MS care and if it is provided by mental health professionals.
© 2013 Elsevier B.V. All rights reserved.
The lifetime prevalence of major depressive disorder is substantially
higher among people with MS than in the general population; suicide
rates are also higher [1–4]. Anxiety, bipolar, and psychotic disorders,
as well as pseudobulbar affect and euphoria, are also seen in MS [5–9].
All these mental disorders can have a significant negative impact on
quality of life and MS-related disability [10,11].
Although standard treatments for mental disorders are effective in
people with MS, clinical experience and the limited research available
suggest that the number of people with MS who actually receive treat-
ment for their mental disorders is low [12–15]. We know very little
abouttheuse ofmentalhealth servicesbypeoplewithMS orthefactors
that affect use . To begin to address these issues and generate
hypotheses for future research, we surveyed MS patients across the
United Statestodeterminehow many experienced mentalhealthprob-
lems and received treatment over the preceding year. We also studied
three of the many factors that affect mental health service utilization:
and the location of care.
We solicited participation from four major MS Centers in the
Northeast, South, Midwest, and Western regions of the United States.
Centers identified eligible patients (MS diagnosis, over age 18, seen at
the Center within two years) and provided total counts. We obtained
IRB approval and provided the Centers with postage-paid packets (a
to the study team) to address and mail. Centers sent reminder postcards
two weeks later. Patients who completed surveys were considered to
Journal of the Neurological Sciences 335 (2013) 42–47
☆ Study funding: The National Multiple Sclerosis Society, USA.
⁎ Corresponding author. Tel.: +1 617 525 6550; fax: +1 617 525 6554.
E-mail address: firstname.lastname@example.org (D.J. Rintell).
1Dr. Ding, Harvard Medical School, conducted statistical analysis.
0022-510X/$ – see front matter © 2013 Elsevier B.V. All rights reserved.
Contents lists available at ScienceDirect
Journal of the Neurological Sciences
journal homepage: www.elsevier.com/locate/jns
have consented freely. Packets were mailed to 87150 patients and
3384 completed questionnaires (3253 on paper and 131 on the tele-
phone, as offered in the cover letter). The overall completion rate
2.2. Data collected
We collected the demographic and disease data shown in Table 1.
We asked patients to pick statements that best described their disease
course (see Table 1 legend) and ambulatory status (modified Disease
Steps scale ). We used the 29 item Multiple Sclerosis Impact Scale
(MSIS-29) to measure health-related quality of life . Patients rated
on a 5-point scale (1 = not at all, 5 = extremely) how much they
were limited in activities or bothered by symptoms, experiences, or sit-
uations to produce summary measures of physical (20 items) and psy-
chological (9 items) impact (with higher scores indicating greater
impact due to more severe limitations, symptoms, and problems). The
scales have high acceptability, internal consistency, test–retest reliabili-
ty, and validity.
To identify serious mental illness (SMI) we used the Kessler 6 (K6)
scale. These six questions are used in national health surveys to identify
response scales; scores ≥13 indicate a high probability of SMI . We
modified questions from the Experience of Care and Health Outcomes
Survey (ECHO™)  to determine, for the preceding 12 months,
whether the patient had experienced any personal (e.g., “feeling de-
pressed, anxious, or ‘stressed out’”), family, or substance use problems
and received mental health treatment. For patients who received treat-
ment, we asked the reason (selected from a list of symptoms, disorders,
or other [e.g., clergy or in-person or online self-help or support group]),
ity of both their MS and mental health care on 10 point scales from
“worst” to “best possible” care and indicated how much their mental
health care helped. They also reported about their mental health care
provider's approach, availability, communication, knowledge of MS,
and familiarity with their illness and treatment (see Online Table 2 for
details). We conducted focus groups at the MS Centers, one with pa-
tients who reported positive experiences receiving mental health care,
and another with those reporting negative experiences; the results are
reported elsewhere .
2.3. Data analysis
We created three patient subgroups: those with “emotional prob-
lems” (experienced personal, family, or substance use problems),
“SMI” (scores above the K6 cut off) or “mental health problems” (either
for demographic and disease characteristics and examined associations
between these and the quality of care measures with chi-squared tests
or ANOVA as appropriate. We used multiple linear regression models
to identify predictors of quality of care. The analyses were generated
using SAS software version 9.2 of the SAS System for UNIX (Copyright
2002 SAS Institute Inc.).
3.1. Demographic, disease, and quality of life characteristics
Compared to participants in the Sonya Slifka study, a population-
based generally representative sample of people with MS , our pa-
tients were younger, better educated, less likely to be widowed, and
more likely to be working. They tended to have shorter durations of ill-
ness, progressive forms of MS, and less ambulation difficulty (Table 1).
The MSIS-29 mean physical (33.5, sd = 26.2) and psychological (33.8,
sd = 24.2) scale scores were somewhat higher (greater impact) than
scores of people with MS who were employed and had no problems
walking; equivalent to scores of people with MS with noself-care prob-
lems;and muchlower(less impact) than scoresofpeoplewhowere re-
psychological scale score was somewhat higher and the physical score
was lower than in people with MS who were neither anxious nor de-
pressed; both scores were much lower than those of people with MS
who were moderately or severely anxious or depressed .
3.2. Mental health problems and care
In the year before the survey, 59.6% of the sample (n = 2017) had
mental health problems (Fig. 1). Of these, 46.3% (n = 934) received
mental health treatment. Patients with mental health problems were
significantly less likely to receive treatment if they had less education,
were working, or were married (chi squared tests, p = 0.001 to
p b 0.001).Age,gender, raceandethnicity,and havinghealthinsurance
were not significantly related to receiving mental health care (Online
Table 1). Patients with mental health problems were significantly
more likely to receive treatment if they had SMI (n = 158) than if
Patient demographic and disease characteristics.
(n = 2156) %2
65 or older
Separate or divorced
No difficulty walking 25 ft6
Difficulty walking 25 ft, no aid
Must use one sided support
Must use two sided support
Wheelchair for longer
Confined to wheelchair or bed
Duration of MS, years
Course of MS
1Numbers do not always add to 3384 because of missing data.
3“I had flare ups [also called relapses, attacks, or exacerbations] when I first developed
MS, and I continue to have flare-ups of my MS.”
4I had flare ups …. I no longer have flare ups, but my level of functioning continues to
worsen over time.”
5“I never had flare ups…. Instead, my level of functioning has gotten steadily worse
since the onset of my disease.”
6Scale modified to include in this item “No/mild symptoms/does not limit activity/
lifestyle” and “Mild symptoms (sensory, bladder, incoordination, weakness, fatigue)
that do not affect walking”.
S.L. Minden et al. / Journal of the Neurological Sciences 335 (2013) 42–47
they had emotional problems (n = 776) (56.4% vs. 44.7%, chi squared
test, p b 0.001).
Among all the patients who reported receiving mental health treat-
ment (n = 1118), even if they did not report mental health problems
(n = 184), 49.5% (n = 537) saw a medical care provider (e.g., neurol-
ogist, primary care physician, nurse), 44.2% (n = 482) saw a mental
health professional (e.g., psychiatrist, psychologist, social worker, psy-
chiatric nurse, mental health or substance abuse counselor), and 6.1%
(n = 66) used other types of care (e.g., self-help or support groups,
clergy, online groups, chats, message boards). Patients with SMI were
significantly more likely to see a medical care provider compared to
those with emotional problems (62.8% vs. 48.4%, chi squared test,
p = 0.005). Thirty percent of patients received their mental health
professionals, 20.1% were located in a Center.
3.3. Reported quality of mental health care
Patients who received mentalhealthtreatment generally rated their
care highly: 7.75 (sd = 2.3) on the 10-point scale. Patients who saw
mental health professionals (n = 482) gave significantly higher ratings
than thosewhosaw medicalcare providers (n = 537) (8.23 [sd = 2.0]
vs. 7.36 [sd = 2.4], t-test, p b 0.001, excludes 66 patients who saw
other providers and 33 with missing data). Seventy-six percent of pa-
tients reported being helped somewhat or a lot by treatment, with pa-
tients of mental health professionals giving significantly higher ratings
than those of medical care providers (83.8% vs. 70.4%, chi squared test,
p b 0.001) (Online Table 2).
Patients also generally reported positive experiences with partic-
ular aspects of their treatment. Three quarters or more reported feel-
ing safe (97.0%) and that their mental health treatment provider
maintained confidentiality (96.4%), showed respect (93.9%), listened
carefully (93.5%), explained things well (92.7%), was knowledgeable
about MS in general (90.3%), gave them enough time (89.3%), and
was up-to-date with their MS and MS care (89.2%). Patients felt as in-
volved as they wanted to be in their treatment (81.4%) and that their
providers were prompt (79.5%), informed them about medication
side effects (74.7%), and were responsive to cultural needs (74.0%)
(OnlineTable2). However, for all these aspects of treatment, theper-
centages of patients reporting positively were significantly higher
for those who saw mental health professionals than for those who
saw medical care providers (chi squared test, p b 0.001 to p =
0.012) except for being generally knowledgeable about MS (88.6%
vs. 93.0%, chi squared test p = 0.017), familiar with the patient's
MS care, responsive to cultural needs, and appropriate about confi-
dentiality (all NS).
Smaller percentages of patients gave positive reports about the in-
(66.5%) – mental health professionals fared better than medical care
providers (73.6% vs. 60.9%, chi squared test, p b 0.001) – or with how
long it took to see a mental health treatment provider (66.4%), what
they were told about self-help and support groups (57.3%) and other
treatment options (44.1%). Although nearly three-quarters reported
needing mental health treatment on the phone, only 25.4% reported
usually or always getting needed care. Less than one-third of providers,
regardless of type, included patients' family or friends in their mental
health treatment, although mental health professionals were signifi-
cantly more likely to discuss doing so (45.7% vs. 36.2%, chi squared
test, p = 0.002).
In a multivariate model, better experiences were associated with re-
ceiving mental health treatment in the MS Center (vs. in the communi-
ty, 0.414, p b 0.01), better psychological functioning scores on the
MSIS-29 (−0.016, p b 0.001), receiving care from a mental health pro-
fessional (vs. from a medical provider, −0.702, p b 0.001), and being
older (55–64 years vs. N35 years, 0.605, p b 0.05) (Online Table 3).
4.1. Unmet need for mental health treatment
Sixty percent of 3384 MS patients treated in four large MS Centers
across the US reported “mental health problems,” broadly defined as
“feeling depressed, anxious, ‘stressed out’ or having family or substance
use problems” in the year preceding the survey. Of these, 86.1% had
emotional problems and 13.9% had symptoms persistent and severe
enough to interfere with daily activities and meet criteria for SMI .
We do not know how manypatients had diagnosable mental disorders,
No mental health
Mental health problems
Mental health treatment
No mental health
(SMI = 158)
Fig. 1. Distribution of survey respondents by mental health (mh) problems and treatment.1Missing = 33. SMI = serious mental illness. Rx = mental health treatment.
S.L. Minden et al. / Journal of the Neurological Sciences 335 (2013) 42–47
but it is likely that their prevalence was higher than in the general US
population (for emotional disorders 18.1%  to 21%  and for SMI
5.4%  to 6.2% ).
Fifty-five percent of patients who reported emotional problems and
43.6% of patients who met criteria for SMI did not receive any mental
with MS [12,13]. Although it is reassuring that treatment rates were
higher for those with more severe mental illness (56.4%) compared to
for any mental disorder ), they are far below what we ought to find
among people in regular contact with health care providers.
Patients with mental health problems were less likely to receive
mental health services if they had less education, were working or
and feel less need for help, and working patients may have difficulty
finding time for treatment. Based on the mental health literature ,
we were surprised to find that age, gender, race, and ethnicity were
not significantly related to receiving treatment, and that education
was, but this may be due to differences between the MS and general
populations and the particular characteristics of our sample. Further in-
impact of physical disability and cognitive impairment.
The consequences of unmet need for mental health treatment are
significant. Mental illness is associated with high mortality rates from
medical illness and suicide [26,27] and with significant disability. In de-
veloped regions of the world, unipolar major depression ranks second
among the 30 leading causes of disease burden, accounting for 22% of
the burden with an increase by almost 40% when suicide is included
in the tabulations [28–30]. Mental illness adversely affects personal,
family, and work life [31–33],and canworsenneurologic disability.
4.2. Patient experiences with mental health care
More than three-quarters of the patients who received mental
health treatment reported that they were helped and more than 70%
had positive experiences regarding many aspects of their mental health
care. Half of those who received mental health treatment did so from
their medical providers, and 44% saw a mental health professional.
Not surprisingly, patients treated by mental health professionals rated
the quality of their mental health care more highly, both overall and
in specific areas, and felt more helped by it than did patients who re-
ceived their mental health care from medical providers. Although the
surveydid not ask respondents fortheir reasonsfor ratingtheir careex-
periences with mental health professionals more positively, the data
suggest that this might be due to particular aspects of the treatment
process and therapeutic relationship : receiving information about
medication side effects and how to manage their mental health condi-
tions, listening carefully, explaining things well, showing respect, spend-
ing enough time, feeling safe, and feeling involved in the treatment (see
Online Table 2). This hypothesis should be tested in future research.
The significant associations between positive experiences and re-
ceiving mental health treatment in the MS Center and from a mental
health professional suggest a model in which mental health services
are offered at thesame site as neurological care for MS. We can hypoth-
esize the reasons – convenience, easier and better care coordination –
but these findings require future study. Research in primary care and
for other chronic conditions suggests that receiving mental health and
medical care in the same setting leads to better mental and physical
health, quality of life, and satisfaction [36–41].
When co-location of mental health and neurological care is not fea-
sible, MS care providers must decide whether to treat their patients'
mental illnesses themselves or refer them to mental health profes-
sionals in the community . Although the patients in our study gen-
erally had positive experiences with mental health care from their
medical providers, their experiences were significantly better when
treated by mental health professionals. This may have been due, in
part, to differences in the way practices are structured. With sessions
typically lasting 45–50 min, mental health professionals have time to
address a patient's concerns without keeping the next patient waiting.
From a methodological perspective, our ability to detect patient re-
ported deficiencies in care and to show how care experiences are related
to the type of care provided suggest the potential usefulness of routinely
monitoring the quality of mental health care. The ECHO, which is closely
related to the widely used CAHPS surveys, appears to be a feasible and
useful way of monitoring care quality from the patient's perspective
4.3. Clinical recommendations
The high prevalence of mental health problems among individuals
with MS is well known, but we know little about the reasons for, or
how to address, the low rate of treatment that we and others have ob-
served [12–15]. Except for two questions (overall ratings of thecare ex-
perience and feeling helped by it), our survey was designed to identify
treatment characteristics, not patients' preferences: we need to know
we can explore the aspects of care that patients believe need improve-
ment. The survey questions, however, were based on our clinical expe-
rience evaluating and treating individuals with MS with mental health
problems, consulting with their MS care providers, and talking with
both about their concerns. As a result, we believe that the clinical rec-
ommendations we suggest below are grounded in sound interpretation
of the data — and in common sense. Mental health providers were
significantly more likely than medical providers to discuss whether to
include family or friends in the patient's treatment because they know
that for some patients and families this can be critical to treatment
success, and that family members may also need professional help .
We do not know, however, why the actual rate of inclusion was so low:
Did patients or family members refuse? Did providers fail to follow
through? These are questions for future study. Similarly, mental health
professionals were significantly less likely to be knowledgeable about
MS in general than medical providers. While this is understandable,
common sense suggests that patients would want their mental health
providers to learn about their disease. Professional educational resources
are available through the national and local chapters of the National
Multiple Sclerosis Society: information on MS, tools and resources for
clinicians  and self-management strategies for patients . Al-
though one-third of patients called to get mental health treatment on
the phone, neither medical providers nor mental health professionals
met their needs. Future research will need to address this issue, but
new telemedicine technologies  may be well-suited to individuals
who cannot easily access care because of their disabilities or distance
from mental health services.
ple was drawn from clinical settings and was younger, better educated,
ly representative population-based sample of people with MS .
services may not be typical and our findings may not be generalizable.
Further bias may have been introduced by the particular MS Centers
from which we recruited subjects: all were associated with academic
broader population of people with MS, would provide more conclusive
A second limitation is the survey's response rate (39%), a well-
known problem with mail surveys. Our patients were typical of mail
survey patients in being young, but atypical in being less disabled .
S.L. Minden et al. / Journal of the Neurological Sciences 335 (2013) 42–47
It is not clear whether having more women and fewer racial and ethnic
minorities in our sample reflects mail survey response patterns or sim-
ply the MS population.
The estimated rate of cognitive dysfunction in MS is between 35%
 and 60% . We do not know the cognitive status of non-
respondents or respondents and therefore the extent to which impair-
ment may have reduced the response rate or biased our findings. Simi-
larly, we do not know the disability status of or extent of mental health
problems among non-respondents; underrepresentation of these indi-
goals of suggesting directions and generating hypotheses for future re-
search, we do not believe that these limitations reduce the value of
A third limitation is that our survey did not contain instruments to
diagnose mental disorders. Although the K-6 is widely used in national
surveys to identify SMI, and the MSIS-29 reliably measures “psycholog-
ical impact”, neither provides diagnoses or symptom-specific severity
ratings. Future research will benefit from including semi-structured di-
nostic Interview Schedule , Composite International Diagnostic
Interview , or Structured Clinical Interview for DSM-IV  and
one or more of the many screening tools that have been validated for
use among individuals with MS.
testing: MS patients prefer to receive mental health treatment co-
locatedwiththeirMScareand provided bymentalhealthprofessionals.
Additional hypotheses and areas for research are suggested above.
There is a high prevalence of mental health problems, and a sig-
nificant unmet need for mental health treatment for people with
MS. Although our findings are preliminary, they do suggest that MS
care providers might consider screening for mental health problems
during clinic visits, including mental health professionals on-site,
and establishing referral relationships with mental health profes-
sionals in the community. They also suggest many areas for future
research that could lead to improvements in access to and quality
of mental health care for individuals with MS.
Conflict of interest
The authors have no conflict of interest to report.
This research was supported by a grant from the Multiple Sclerosis
Society (#HC 0059) and a cooperative agreement from the Agency for
Health Care Researchand Quality(AHRQ;U18HSO16978).We grateful-
Sclerosis Society of the United States, who provided their assistance, as
well as Khurram Bashir, M.D., Beverly Layton, RN MSN, Peggy Crawford,
Ph.D., and Darcy Cox, Ph.D.
Appendix A. Supplementary data
Supplementary data to this article can be found online at http://dx.
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