Journal of the Neurological Sciences 335 (2013) 42–47
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Improving the quality of mental health care in Multiple Sclerosis☆ S.L. Minden a, L. Ding b,1, P.D. Cleary c, D. Frankel d, B.I. Glanz e, B.C. Healy e, D.J. Rintell e,⁎ a
Department of Psychiatry, Brigham and Women's Hospital, Boston, MA 02115 USA Department of Health Care Policy, Harvard Medical School, Boston, MA 02115 USA c Yale School of Public Health, Yale School of Medicine, New Haven, CT 06520 USA d National Multiple Sclerosis Society, New York, NY USA e Partners MS Center, Brigham and Women's Hospital, Boston, MA 02445 USA b
a r t i c l e
i n f o
Article history: Received 28 February 2013 Received in revised form 22 July 2013 Accepted 14 August 2013 Available online 30 August 2013 Keywords: Multiple Sclerosis Mental health problems Patient care experience Mental health treatment CAHPS Mental health service utilization
a b s t r a c t Objective: An exploratory study of mental health treatment of people with multiple sclerosis (MS) to identify hypotheses for future testing. Methods: 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. 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 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). Conclusions: 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 colocated with their MS care and if it is provided by mental health professionals. © 2013 Elsevier B.V. All rights reserved.
1. Introduction 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 treatment for their mental disorders is low [12–15]. We know very little about the use of mental health services by people with MS or the factors that affect use [16]. To begin to address these issues and generate ☆ Study funding: The National Multiple Sclerosis Society, USA. ⁎ Corresponding author. Tel.: +1 617 525 6550; fax: +1 617 525 6554. E-mail address: [email protected] (D.J. Rintell). 1 Dr. Ding, Harvard Medical School, conducted statistical analysis. 0022-510X/$ – see front matter © 2013 Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.jns.2013.08.021
hypotheses for future research, we surveyed MS patients across the United States to determine how many experienced mental health problems and received treatment over the preceding year. We also studied three of the many factors that affect mental health service utilization: patient experiences with and ratings of care, type of treatment provider, and the location of care. 2. Methods 2.1. Sample 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 questionnaire, explanatory cover letter, and stamped envelope addressed to the study team) to address and mail. Centers sent reminder postcards two weeks later. Patients who completed surveys were considered to
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have consented freely. Packets were mailed to 87150 patients and 3384 completed questionnaires (3253 on paper and 131 on the telephone, as offered in the cover letter). The overall completion rate was 39%. 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 [17]). We used the 29 item Multiple Sclerosis Impact Scale (MSIS-29) to measure health-related quality of life [18]. 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 situations to produce summary measures of physical (20 items) and psychological (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 reliability, 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
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mental symptoms and measure their frequency and severity with Likert response scales; scores ≥13 indicate a high probability of SMI [19]. We modified questions from the Experience of Care and Health Outcomes Survey (ECHO™) [20] to determine, for the preceding 12 months, whether the patient had experienced any personal (e.g., “feeling depressed, anxious, or ‘stressed out’”), family, or substance use problems and received mental health treatment. For patients who received treatment, we asked the reason (selected from a list of symptoms, disorders, and problems), provider type (medical care, mental health professional, or other [e.g., clergy or in-person or online self-help or support group]), and location (MS Center or community). Patients rated the overall quality 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 patients who reported positive experiences receiving mental health care, and another with those reporting negative experiences; the results are reported elsewhere [21]. 2.3. Data analysis
Table 1 Patient demographic and disease characteristics.
Gender Age, years
Female 18–34 35–44 45–54 55–64 65 or older Education ≤High school Some college ≥College Race/ethnicity White African American Other race Hispanic Marital Status Married Widowed Separate or divorced Never married Currently Working No Health Insurance Yes Duration of MS, years ≤5 years 6–10 years 11–15 years 16–20 years N20 years Course of MS Relapsing remitting 3 Secondary progressive 4 Primary progressive 5 Other Disease Steps No difficulty walking 25 ft 6 Difficulty walking 25 ft, no aid Must use one sided support Must use two sided support Wheelchair for longer distances Confined to wheelchair or bed 1
Patients (n = 33841) %
Slifka study [22] (n = 2156) % 2
77.2 (2596) 12.8 (428) 27.1 (911) 33.8 (1133) 20.5 (689) 5.8 (196) 17.9 (602) 33.8 (1134) 48.3 (1620) 90.5 (3064) 5.9 (199) 2.0 (67) 1.6 (54) 70.7 (2366) 2.2 (72) 14.4 (482) 12.8 (427) 52.2 (1748) 96.7 (3244) 37.0 (1205) 25.9 (843) 16.3 (532) 10.8 (351) 10.0 (324) 50.3 (1597) 30.9 (981) 14.3 (453) 4.5 (142) 53.6 (1791) 7.0 (235) 11.0 (366) 13.2 (441) 7.6 (254)
77.0 6.4 21.5 37.9 24.8 9.5 26.6 33.4 40.1 87.5 4.8 7.7 4.1 66.5 5.3 18.2 10.0 56.5 96.0 25.2 24.2 21.4 12.0 17.3 57.9 24.9 12.6 4.5 42.1 10.3 9.4 14.3 6.8
7.6 (254)
15.5
Numbers do not always add to 3384 because of missing data. Weighted percentages. 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.” 4 I 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.” 6 Scale 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”. 2
We created three patient subgroups: those with “emotional problems” (experienced personal, family, or substance use problems), “SMI” (scores above the K6 cut off) or “mental health problems” (either “emotional problems,” “SMI” or both). We calculated summary statistics 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. Results 3.1. Demographic, disease, and quality of life characteristics Compared to participants in the Sonya Slifka study, a populationbased generally representative sample of people with MS [22], our patients were younger, better educated, less likely to be widowed, and more likely to be working. They tended to have shorter durations of illness, 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 no self-care problems; and much lower (less impact) than scores of people who were retired due to MS, confined to bed, or unable to perform self-care [18]. The psychological scale score was somewhat higher and the physical score was lower than in people with MS who were neither anxious nor depressed; both scores were much lower than those of people with MS who were moderately or severely anxious or depressed [18]. 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, race and ethnicity, and having health insurance 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
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S.L. Minden et al. / Journal of the Neurological Sciences 335 (2013) 42–47
Respondents 33841
Nomental mentalhealth health No problems problems 1367
Mental health problems 2017 Emotional problems 1737
No Rx 1183
Mental health treatment 1118 mh problems 934 (SMI = 158)
No mh problems 184
Saw medical care provider 537
Saw mh professional 482
SMI 280
No mh treatment 1083
Saw other provider 66
Fig. 1. Distribution of survey respondents by mental health (mh) problems and treatment. 1Missing = 33. SMI = serious mental illness. Rx = mental health treatment.
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 treatment (n = 1118), even if they did not report mental health problems (n = 184), 49.5% (n = 537) saw a medical care provider (e.g., neurologist, primary care physician, nurse), 44.2% (n = 482) saw a mental health professional (e.g., psychiatrist, psychologist, social worker, psychiatric 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 treatment in the MS Center. Of the medical care providers treating mental health problems, 39.7% were located in a Center; of the mental health professionals, 20.1% were located in a Center. 3.3. Reported quality of mental health care Patients who received mental health treatment 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 those who saw medical care 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 patients reported being helped somewhat or a lot by treatment, with patients 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 particular aspects of their treatment. Three quarters or more reported feeling 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 involved 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%)
(Online Table 2). However, for all these aspects of treatment, the percentages 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 confidentiality (all NS). Smaller percentages of patients gave positive reports about the information they received about managing their mental health conditions (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 significantly 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 receiving mental health treatment in the MS Center (vs. in the community, 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 professional (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. Discussion 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 [19]. We do not know how many patients had diagnosable mental disorders,
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but it is likely that their prevalence was higher than in the general US population (for emotional disorders 18.1% [23] to 21% [24] and for SMI 5.4% [24] to 6.2% [23]). Fifty-five percent of patients who reported emotional problems and 43.6% of patients who met criteria for SMI did not receive any mental health treatment. These rates are consistent with other studies of people with MS [12,13]. Although it is reassuring that treatment rates were higher for those with more severe mental illness (56.4%) compared to those with emotional problems (44.7%), and that both rates were higher than those reported for the general population (46.2% for SMI and 18.3% for any mental disorder [23]), 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 were married. Married individuals may have support from their spouses and feel less need for help, and working patients may have difficulty finding time for treatment. Based on the mental health literature [25], 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 investigation of these common barriers to care is indicated, along with the 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 developed 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 can worsen neurologic disability [34]. 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 received their mental health care from medical providers. Although the survey did not ask respondents for their reasons for rating their care experiences with mental health professionals more positively, the data suggest that this might be due to particular aspects of the treatment process and therapeutic relationship [35]: receiving information about medication side effects and how to manage their mental health conditions, listening carefully, explaining things well, showing respect, spending 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 receiving mental health treatment in the MS Center and from a mental health professional suggest a model in which mental health services are offered at the same site as neurological care for MS. We can hypothesize 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 feasible, MS care providers must decide whether to treat their patients' mental illnesses themselves or refer them to mental health professionals in the community [42]. Although the patients in our study generally had positive experiences with mental health care from their medical providers, their experiences were significantly better when
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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 reported 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 [20,43]. 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 observed [12–15]. Except for two questions (overall ratings of the care experience and feeling helped by it), our survey was designed to identify treatment characteristics, not patients' preferences: we need to know “what” happens to individuals with MS with emotional problems before we can explore the aspects of care that patients believe need improvement. The survey questions, however, were based on our clinical experience 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 recommendations 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 [44]. 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 [45] and self-management strategies for patients [46]. Although 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 [47] may be well-suited to individuals who cannot easily access care because of their disabilities or distance from mental health services. 4.4. Limitations There are several limitations associated with this study. First, our sample was drawn from clinical settings and was younger, better educated, less disabled, and more recently diagnosed than the patients in a generally representative population-based sample of people with MS [22]. Therefore, the rates of emotional problems, SMI, and use of mental health 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 medical settings and located in large urban communities with substantial numbers of mental health professionals. Prospective research, sampling a broader population of people with MS, would provide more conclusive results. A second limitation is the survey's response rate (39%), a wellknown problem with mail surveys. Our patients were typical of mail survey patients in being young, but atypical in being less disabled [48].
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It is not clear whether having more women and fewer racial and ethnic minorities in our sample reflects mail survey response patterns or simply the MS population. The estimated rate of cognitive dysfunction in MS is between 35% [49] and 60% [50]. We do not know the cognitive status of nonrespondents or respondents and therefore the extent to which impairment may have reduced the response rate or biased our findings. Similarly, we do not know the disability status of or extent of mental health problems among non-respondents; underrepresentation of these individuals may also have biased our results. Nevertheless, given our limited goals of suggesting directions and generating hypotheses for future research, we do not believe that these limitations reduce the value of this study. 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 “psychological impact”, neither provides diagnoses or symptom-specific severity ratings. Future research will benefit from including semi-structured diagnostic interviews such as the National Institute of Mental Health Diagnostic Interview Schedule [51], Composite International Diagnostic Interview [52], or Structured Clinical Interview for DSM-IV [53] and one or more of the many screening tools that have been validated for use among individuals with MS. In spite of these limitations, two major hypotheses emerge for future testing: MS patients prefer to receive mental health treatment colocated with their MS care and provided by mental health professionals. Additional hypotheses and areas for research are suggested above. 5. Conclusion There is a high prevalence of mental health problems, and a significant 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 professionals 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. Acknowledgments This research was supported by a grant from the Multiple Sclerosis Society (#HC 0059) and a cooperative agreement from the Agency for Health Care Research and Quality (AHRQ; U18HSO16978). We gratefully acknowledge the efforts of four local chapters of the National Multiple 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. doi.org/10.1016/j.jns.2013.08.021. References [1] The Goldman Consensus statement on depression in multiple sclerosis. Mult Scler Jun 2005;11(3):328–37 [PubMed PMID: 15957516. Epub 2005/06/17. eng]. [2] Kessler RC, Berglund P, Demler O, Jin R, Koretz D, Merikangas KR, et al. The epidemiology of major depressive disorder. JAMA 2003;289(23):3095–105. [3] Feinstein A. An examination of suicidal intent in patients with multiple sclerosis. Neurology 2002;59(5):674.
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S.L. Minden et al. / Journal of the Neurological Sciences 335 (2013) 42–47 [39] Blount A, Schoenbaum M, Kathol R, Rollman BL, Thomas M, O'Donohue W, et al. The economics of behavioral health services in medical settings: A summary of the evidence. Prof Psychol Res Pract 2007;38(3):290. [40] Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. JAMA 2002;288(15):1909–14. [41] Meyers D, Clancy CM. The patient-centered medical home putting the patient at the center of care. J Prim Care Community Health 2011;2(1):2–5. [42] Schiffer RB. The spectrum of depression in multiple sclerosis: an approach for clinical management. Arch Neurol 1987;44(6):596. [43] Scholle SH, Vuong O, Ding L, Fry S, Gallagher P, Brown JA, et al. Development of and field-test results for the CAHPS PCMH survey. Med Care 2012;50:S2–S10 [November]. [44] Kalb R. Multiple sclerosis. Demos Medical Publishing; 2011. [45] National Multiple Sclerosis Society. http://www.nationalmssociety.org/ms-clinicalcare-network/index.aspx. [46] National Multiple Sclerosis Society. http://www.nationalmssociety.org/search-results/ index.aspx?q=self-management&x=15&y=8&start=0&num=20. [47] Hatzakis Jr M, Haselkorn J, Williams R, Turner A, Nichol P. Telemedicine and the delivery of health services to veterans with multiple sclerosis. J Rehabil Res Dev 2003;40:265–82.
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[48] Simon G, Rutter C, Crosier M, Scott J, Operskalski B, Ludman E. Are comparisons of consumer satisfaction with providers biased by nonresponse or case-mix differences? Psychiatr Serv (Washington DC) 2009;60(1):67. [49] Patti F, Amato M, Trojano M, Bastianello S, Tola M, Goretti B, et al. Cognitive impairment and its relation with disease measures in mildly disabled patients with relapsing–remitting multiple sclerosis: baseline results from the Cognitive Impairment in Multiple Sclerosis (COGIMUS) study. Mult Scler 2009;15(7):779–88. [50] Benedict RH, Cookfair D, Gavett R, Gunther M, Munschauer F, Garg N, et al. Validity of the minimal assessment of cognitive function in multiple sclerosis (MACFIMS). J Int Neuropsychol Soc 2006;12(4):549–58. [51] Robins LN, Helzer JE, Croughan J, Ratcliff KS. National Institute of Mental Health Diagnostic Interview Schedule. Its history, characteristics, and validity. Arch Gen Psychiatry 1981;38:381–9. [52] Robins LN, Wing J, Wittchen HU, et al. The composite international diagnostic interview. An epidemiological instrument suitable for use in conjunction with different diagnostic systems and in different cultures. Arch Gen Psychiatry 1988;45:1069–77. [53] First M, Spitzer R, Gibbon M, Williams J. Structured clinical interview for DSM-IV Axis I disorders-patient edition (SCID-I/P, Version 2.0). New York: New York State Psychiatric Institute; 1995.
Contents lists available at ScienceDirect
Journal of the Neurological Sciences journal homepage: www.elsevier.com/locate/jns
Improving the quality of mental health care in Multiple Sclerosis☆ S.L. Minden a, L. Ding b,1, P.D. Cleary c, D. Frankel d, B.I. Glanz e, B.C. Healy e, D.J. Rintell e,⁎ a
Department of Psychiatry, Brigham and Women's Hospital, Boston, MA 02115 USA Department of Health Care Policy, Harvard Medical School, Boston, MA 02115 USA c Yale School of Public Health, Yale School of Medicine, New Haven, CT 06520 USA d National Multiple Sclerosis Society, New York, NY USA e Partners MS Center, Brigham and Women's Hospital, Boston, MA 02445 USA b
a r t i c l e
i n f o
Article history: Received 28 February 2013 Received in revised form 22 July 2013 Accepted 14 August 2013 Available online 30 August 2013 Keywords: Multiple Sclerosis Mental health problems Patient care experience Mental health treatment CAHPS Mental health service utilization
a b s t r a c t Objective: An exploratory study of mental health treatment of people with multiple sclerosis (MS) to identify hypotheses for future testing. Methods: 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. 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 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). Conclusions: 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 colocated with their MS care and if it is provided by mental health professionals. © 2013 Elsevier B.V. All rights reserved.
1. Introduction 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 treatment for their mental disorders is low [12–15]. We know very little about the use of mental health services by people with MS or the factors that affect use [16]. To begin to address these issues and generate ☆ Study funding: The National Multiple Sclerosis Society, USA. ⁎ Corresponding author. Tel.: +1 617 525 6550; fax: +1 617 525 6554. E-mail address: [email protected] (D.J. Rintell). 1 Dr. Ding, Harvard Medical School, conducted statistical analysis. 0022-510X/$ – see front matter © 2013 Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.jns.2013.08.021
hypotheses for future research, we surveyed MS patients across the United States to determine how many experienced mental health problems and received treatment over the preceding year. We also studied three of the many factors that affect mental health service utilization: patient experiences with and ratings of care, type of treatment provider, and the location of care. 2. Methods 2.1. Sample 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 questionnaire, explanatory cover letter, and stamped envelope addressed to the study team) to address and mail. Centers sent reminder postcards two weeks later. Patients who completed surveys were considered to
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have consented freely. Packets were mailed to 87150 patients and 3384 completed questionnaires (3253 on paper and 131 on the telephone, as offered in the cover letter). The overall completion rate was 39%. 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 [17]). We used the 29 item Multiple Sclerosis Impact Scale (MSIS-29) to measure health-related quality of life [18]. 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 situations to produce summary measures of physical (20 items) and psychological (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 reliability, 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
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mental symptoms and measure their frequency and severity with Likert response scales; scores ≥13 indicate a high probability of SMI [19]. We modified questions from the Experience of Care and Health Outcomes Survey (ECHO™) [20] to determine, for the preceding 12 months, whether the patient had experienced any personal (e.g., “feeling depressed, anxious, or ‘stressed out’”), family, or substance use problems and received mental health treatment. For patients who received treatment, we asked the reason (selected from a list of symptoms, disorders, and problems), provider type (medical care, mental health professional, or other [e.g., clergy or in-person or online self-help or support group]), and location (MS Center or community). Patients rated the overall quality 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 patients who reported positive experiences receiving mental health care, and another with those reporting negative experiences; the results are reported elsewhere [21]. 2.3. Data analysis
Table 1 Patient demographic and disease characteristics.
Gender Age, years
Female 18–34 35–44 45–54 55–64 65 or older Education ≤High school Some college ≥College Race/ethnicity White African American Other race Hispanic Marital Status Married Widowed Separate or divorced Never married Currently Working No Health Insurance Yes Duration of MS, years ≤5 years 6–10 years 11–15 years 16–20 years N20 years Course of MS Relapsing remitting 3 Secondary progressive 4 Primary progressive 5 Other Disease Steps No difficulty walking 25 ft 6 Difficulty walking 25 ft, no aid Must use one sided support Must use two sided support Wheelchair for longer distances Confined to wheelchair or bed 1
Patients (n = 33841) %
Slifka study [22] (n = 2156) % 2
77.2 (2596) 12.8 (428) 27.1 (911) 33.8 (1133) 20.5 (689) 5.8 (196) 17.9 (602) 33.8 (1134) 48.3 (1620) 90.5 (3064) 5.9 (199) 2.0 (67) 1.6 (54) 70.7 (2366) 2.2 (72) 14.4 (482) 12.8 (427) 52.2 (1748) 96.7 (3244) 37.0 (1205) 25.9 (843) 16.3 (532) 10.8 (351) 10.0 (324) 50.3 (1597) 30.9 (981) 14.3 (453) 4.5 (142) 53.6 (1791) 7.0 (235) 11.0 (366) 13.2 (441) 7.6 (254)
77.0 6.4 21.5 37.9 24.8 9.5 26.6 33.4 40.1 87.5 4.8 7.7 4.1 66.5 5.3 18.2 10.0 56.5 96.0 25.2 24.2 21.4 12.0 17.3 57.9 24.9 12.6 4.5 42.1 10.3 9.4 14.3 6.8
7.6 (254)
15.5
Numbers do not always add to 3384 because of missing data. Weighted percentages. 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.” 4 I 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.” 6 Scale 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”. 2
We created three patient subgroups: those with “emotional problems” (experienced personal, family, or substance use problems), “SMI” (scores above the K6 cut off) or “mental health problems” (either “emotional problems,” “SMI” or both). We calculated summary statistics 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. Results 3.1. Demographic, disease, and quality of life characteristics Compared to participants in the Sonya Slifka study, a populationbased generally representative sample of people with MS [22], our patients were younger, better educated, less likely to be widowed, and more likely to be working. They tended to have shorter durations of illness, 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 no self-care problems; and much lower (less impact) than scores of people who were retired due to MS, confined to bed, or unable to perform self-care [18]. The psychological scale score was somewhat higher and the physical score was lower than in people with MS who were neither anxious nor depressed; both scores were much lower than those of people with MS who were moderately or severely anxious or depressed [18]. 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, race and ethnicity, and having health insurance 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
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Respondents 33841
Nomental mentalhealth health No problems problems 1367
Mental health problems 2017 Emotional problems 1737
No Rx 1183
Mental health treatment 1118 mh problems 934 (SMI = 158)
No mh problems 184
Saw medical care provider 537
Saw mh professional 482
SMI 280
No mh treatment 1083
Saw other provider 66
Fig. 1. Distribution of survey respondents by mental health (mh) problems and treatment. 1Missing = 33. SMI = serious mental illness. Rx = mental health treatment.
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 treatment (n = 1118), even if they did not report mental health problems (n = 184), 49.5% (n = 537) saw a medical care provider (e.g., neurologist, primary care physician, nurse), 44.2% (n = 482) saw a mental health professional (e.g., psychiatrist, psychologist, social worker, psychiatric 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 treatment in the MS Center. Of the medical care providers treating mental health problems, 39.7% were located in a Center; of the mental health professionals, 20.1% were located in a Center. 3.3. Reported quality of mental health care Patients who received mental health treatment 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 those who saw medical care 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 patients reported being helped somewhat or a lot by treatment, with patients 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 particular aspects of their treatment. Three quarters or more reported feeling 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 involved 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%)
(Online Table 2). However, for all these aspects of treatment, the percentages 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 confidentiality (all NS). Smaller percentages of patients gave positive reports about the information they received about managing their mental health conditions (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 significantly 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 receiving mental health treatment in the MS Center (vs. in the community, 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 professional (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. Discussion 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 [19]. We do not know how many patients had diagnosable mental disorders,
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but it is likely that their prevalence was higher than in the general US population (for emotional disorders 18.1% [23] to 21% [24] and for SMI 5.4% [24] to 6.2% [23]). Fifty-five percent of patients who reported emotional problems and 43.6% of patients who met criteria for SMI did not receive any mental health treatment. These rates are consistent with other studies of people with MS [12,13]. Although it is reassuring that treatment rates were higher for those with more severe mental illness (56.4%) compared to those with emotional problems (44.7%), and that both rates were higher than those reported for the general population (46.2% for SMI and 18.3% for any mental disorder [23]), 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 were married. Married individuals may have support from their spouses and feel less need for help, and working patients may have difficulty finding time for treatment. Based on the mental health literature [25], 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 investigation of these common barriers to care is indicated, along with the 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 developed 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 can worsen neurologic disability [34]. 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 received their mental health care from medical providers. Although the survey did not ask respondents for their reasons for rating their care experiences with mental health professionals more positively, the data suggest that this might be due to particular aspects of the treatment process and therapeutic relationship [35]: receiving information about medication side effects and how to manage their mental health conditions, listening carefully, explaining things well, showing respect, spending 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 receiving mental health treatment in the MS Center and from a mental health professional suggest a model in which mental health services are offered at the same site as neurological care for MS. We can hypothesize 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 feasible, MS care providers must decide whether to treat their patients' mental illnesses themselves or refer them to mental health professionals in the community [42]. Although the patients in our study generally had positive experiences with mental health care from their medical providers, their experiences were significantly better when
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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 reported 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 [20,43]. 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 observed [12–15]. Except for two questions (overall ratings of the care experience and feeling helped by it), our survey was designed to identify treatment characteristics, not patients' preferences: we need to know “what” happens to individuals with MS with emotional problems before we can explore the aspects of care that patients believe need improvement. The survey questions, however, were based on our clinical experience 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 recommendations 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 [44]. 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 [45] and self-management strategies for patients [46]. Although 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 [47] may be well-suited to individuals who cannot easily access care because of their disabilities or distance from mental health services. 4.4. Limitations There are several limitations associated with this study. First, our sample was drawn from clinical settings and was younger, better educated, less disabled, and more recently diagnosed than the patients in a generally representative population-based sample of people with MS [22]. Therefore, the rates of emotional problems, SMI, and use of mental health 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 medical settings and located in large urban communities with substantial numbers of mental health professionals. Prospective research, sampling a broader population of people with MS, would provide more conclusive results. A second limitation is the survey's response rate (39%), a wellknown problem with mail surveys. Our patients were typical of mail survey patients in being young, but atypical in being less disabled [48].
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It is not clear whether having more women and fewer racial and ethnic minorities in our sample reflects mail survey response patterns or simply the MS population. The estimated rate of cognitive dysfunction in MS is between 35% [49] and 60% [50]. We do not know the cognitive status of nonrespondents or respondents and therefore the extent to which impairment may have reduced the response rate or biased our findings. Similarly, we do not know the disability status of or extent of mental health problems among non-respondents; underrepresentation of these individuals may also have biased our results. Nevertheless, given our limited goals of suggesting directions and generating hypotheses for future research, we do not believe that these limitations reduce the value of this study. 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 “psychological impact”, neither provides diagnoses or symptom-specific severity ratings. Future research will benefit from including semi-structured diagnostic interviews such as the National Institute of Mental Health Diagnostic Interview Schedule [51], Composite International Diagnostic Interview [52], or Structured Clinical Interview for DSM-IV [53] and one or more of the many screening tools that have been validated for use among individuals with MS. In spite of these limitations, two major hypotheses emerge for future testing: MS patients prefer to receive mental health treatment colocated with their MS care and provided by mental health professionals. Additional hypotheses and areas for research are suggested above. 5. Conclusion There is a high prevalence of mental health problems, and a significant 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 professionals 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. Acknowledgments This research was supported by a grant from the Multiple Sclerosis Society (#HC 0059) and a cooperative agreement from the Agency for Health Care Research and Quality (AHRQ; U18HSO16978). We gratefully acknowledge the efforts of four local chapters of the National Multiple 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. doi.org/10.1016/j.jns.2013.08.021. References [1] The Goldman Consensus statement on depression in multiple sclerosis. Mult Scler Jun 2005;11(3):328–37 [PubMed PMID: 15957516. Epub 2005/06/17. eng]. [2] Kessler RC, Berglund P, Demler O, Jin R, Koretz D, Merikangas KR, et al. The epidemiology of major depressive disorder. JAMA 2003;289(23):3095–105. [3] Feinstein A. An examination of suicidal intent in patients with multiple sclerosis. Neurology 2002;59(5):674.
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