Barriers to Mental Health Treatment: Results from the National Comorbidity Survey Replication (NCS-R)

doi:10.1017/S0033291710002291

Psychol Med. Author manuscript; available in PMC 2012 August 1.

Published in final edited form as:

Psychol Med. 2011 August; 41(8): 1751–1761.

Published online 2010 December 7. doi: 10.1017/S0033291710002291

PMCID: PMC3128692

NIHMSID: NIHMS249001

Barriers to Mental Health Treatment: Results from the National Comorbidity Survey Replication (NCS-R)

Ramin Mojtabai, MD, PhD, MPH,¹ Mark Olfson, MD, MPH,² Nancy A. Sampson, BA,³ Robert Jin, MA,³ Benjamin Druss, MD, MPH,⁴ Philip S. Wang, MD, DrPH,⁵ Kenneth B. Wells, MD, MPH,⁶ Harold A. Pincus, MD,⁷ and Ronald C. Kessler, PhD³

¹Department of Mental Health, Bloomberg School of Public Health and Department of Psychiatry, Johns Hopkins University, Baltimore, MD

²Department of Psychiatry, College of Physicians and Surgeons, Columbia University and New York State Psychiatric Institute, New York, NY

³Department of Health Care Policy, Harvard Medical School, Boston, MA

⁴Department of Health Policy and Management, Rollins School of Public Health, Emory University, Atlanta, GA

⁵Division of Services and Intervention Research, National Institute of Mental Health, Bethesda, MD

⁶Department of Psychiatry & Biobehavioral Sciences, University of California, Los Angeles, Los Angeles, CA

⁷Department of Psychiatry, Columbia University, New York, NY

Correspondence and requests for reprints: Ronald C. Kessler, Harvard Medical School, Department of Health Care Policy, 180 Longwood Ave., Suite 215, Boston, MA 02115; Tel. 617-432-3587, Fax 617-432-3588, Email: kessler/at/hcp.med.harvard.edu.

The publisher's final edited version of this article is available at Psychol Med

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Abstract

Background

To examine barriers to initiation and continuation of treatment among individuals with common mental disorders in the US general population.

Methods

Respondents in the National Comorbidity Survey-Replication with common 12-month DSM-IV mood, anxiety, substance, impulse control and childhood disorders were asked about perceived need for treatment, structural barriers, and attitudinal/evaluative barriers to initiation and continuation of treatment.

Results

Low perceived need was reported by 44.8% of respondents with a disorder who did not seek treatment. Desire to handle the problem on one's own was the most common reason among respondents with perceived need both for not seeking treatment (72.6%) and for dropping out of treatment (42.2%). Attitudinal/evaluative factors were much more important than structural barriers both to initiating (97.4% vs. 22.2%) and to continuing (81.9% vs. 31.8%) of treatment. Reasons for not seeking treatment varied with illness severity. Low perceived need was a more common reason for not seeking treatment among individuals with mild (57.0%) than moderate (39.3%) or severe (25.9%) disorders, whereas structural and attitudinal/evaluative barriers were more common among respondents with more severe conditions.

Conclusions

Low perceived need and attitudinal/evaluative barriers are the major barriers to treatment seeking and staying in treatment among individuals with common mental disorders. Efforts to increase treatment seeking and reduce treatment dropout need to take these barriers into consideration as well as to recognize that barriers differ as a function of socio-demographic and clinical characteristics.

Keywords: mental health, treatment seeking, continuity of care

INTRODUCTION

A substantial proportion of adults with common mental disorders fail to receive any treatment (Kessler et al., 2005c; President's New Freedom Commission on Mental Health, 2005; Sareen et al., 2007; Wang et al., 2007a; Wang et al., 2005a; Wang et al., 2005b), even when these conditions are quite severe and disabling (Kessler et al., 2001). Furthermore, many who do receive treatment drop out before completing treatment (Edlund et al., 2006; Wang, 2007b). Because individuals with psychiatric disorders would often benefit from a full course of treatment, the gap between the prevalence and treatment of disorders contributes to unmet need for care. An important step in reducing unmet need for mental health care involves understanding the reasons why individuals with mental disorders either do not seek treatment or drop out of care.

Several factors are thought to impede appropriate mental health care seeking including lack of perceived need for treatment (Edlund et al., 2006; Mojtabai et al., 2002; Sareen et al., 2007), stigma (Van Voorhees et al., 2005, 2006; Wrigley et al., 2005; Wynaden et al., 2005), pessimism regarding the effectiveness of treatments (Bayer & Peay, 1997), lack of access due to financial barriers (Mojtabai, 2005), and other structural barriers such as inconvenience or inability to obtain an appointment (Sareen et al., 2007). The contribution of these factors, however, may vary across populations, health care settings (Sareen et al., 2007), and possibly over time (Mojtabai, 2005). In one recently published study, for example, low-income respondents from the US as compared with those from Ontario or the Netherlands were significantly more likely to report a financial barrier to mental health treatment (Sareen et al., 2007). Nevertheless, in all three settings attitudinal/evaluative barriers were more commonly reported obstacles than financial factors (Sareen et al., 2007).

Within the United States, financial barriers to mental health treatment seeking may have grown over the past decade (Mojtabai, 2005). During this period, however, public attitudes towards mental health treatment seeking became more favorable (Mojtabai, 2007). These trends, coupled with a marked increase in the use of mental health care (Kessler et al., 2005c; Olfson et al., 2002) call for a re-evaluation of reasons for not seeking treatment in the US. A better understanding of these barriers may inform the design of clinical services and public health campaigns aimed at improving access to mental health care.

In the present study, we use data from the National Comorbidity Survey-Replication (NCS-R), a representative survey of the US population in the early 2000s, to examine barriers to initiation or continuation of treatment among individuals who meet criteria for a mental disorder. More specifically, we examine the role of perceived need as well as structural and attitudinal/evaluative barriers in treatment seeking and in dropping out of treatment among those who have already started treatment. We also examine and compare the role of these factors at different levels of clinical severity. Finally, we use multivariate models to examine associations between socio-demographic characteristics and severity of illness on the one hand and barriers to mental health treatment seeking, on the other.

METHODS

Sample

The NCS-R is a nationally representative household survey of respondents 18 years and older in the contiguous United States (Kessler et al., 2004; Kessler et al., 2005a). Face-to-face interviews were carried out with 9,282 respondents between February 5, 2001, and April 7, 2003. Part I included a core diagnostic assessment and a service use questionnaire administered to all respondents. Part II (n = 5,962) assessed risk factors, correlates and additional disorders, and was administered to all Part I respondents with lifetime disorders plus a probability subsample of other respondents. Because a number of disorders considered in rating severity level were asked only in Part II, the present analyses are limited to the Part II sample. This sample was appropriately weighted to adjust for the under-sampling of Part I respondents without any disorder. The overall response rate was 70.9%. NCS-R recruitment, consent, and field procedures were approved by the Human Subjects Committees of Harvard Medical School and the University of Michigan.

Reasons for not using services or not continuing to use them

Respondents who reported no use of mental health services were asked whether there was a time in the past 12 months that they felt that they might have needed to see a professional for problems with their emotions, nerves, or mental health. Those who answered affirmatively were then asked whether or not they endorsed each of a series of reason statements about why they did not see a professional from a list that included reasons involving low perceived need, structural barriers (e.g., lack of financial means, available treatments, personnel, or transportation or the presence of other inconveniences), and attitudinal/evaluative barriers (e.g., the presence of stigma, low perceived efficacy of treatments, or the desire to handle the problem on their own). These reason statements are based on similar statements used in the baseline NCS and earlier studies as well as on focus group interviews about barriers to seeking treatment carried out to expand these earlier lists. Respondents who reported that there was never a time in the past 12 months when they felt they might need help were not asked about reasons and were coded as having “low perceived need” (Appendix A).

Respondents who reported having seen a provider within the mental health specialty, general medical, human service, or complementary-alternative medical sectors for help with emotional problems in the past 12 months were asked whether the treatment had stopped and, if so, whether they “quit before the [provider] wanted [them] to stop.” Those who answered affirmatively to both questions were then asked to endorse reasons for dropping out of treatment from a list of potential reason statements similar to the list of reasons for not seeking treatment (Appendix B). Only respondents who had stopped or quit all ongoing treatments were rated as having dropped out and asked questions about the reasons for dropping out of treatment. Those who continued treatment with providers in one sector while stopping treatment with any providers in other sectors were not rated as having dropped out of treatment. The 160 respondents who reported taking psychotropic medications for their emotional problems at any time in the past year but reported no contacts with a treatment provided over that time period were not counted as having received mental health treatment in the past 12 months even though some of them were presumably in long-term treatment and others made their last visit shortly before the beginning of the 12-month recall period (e.g., 13 months ago) and continued taking medications into the early part of that recall period. As we did not ask questions about treatment beyond the 12-month recall period, we had no way of classifying the treatment of these 160 respondents, leading us to delete them from the analysis.

Diagnostic assessment

DSM-IV diagnoses were based on Version 3.0 of the Composite International Diagnostic Interview (CIDI) (Kessler & Üstün, 2004), a fully-structured lay interview that generates diagnoses according to International Classification of Diseases, 10th Revision (World Health Organization, 1992) and DSM-IV (American Psychiatric Association, 1994) criteria. The analyses were restricted to respondents with at least one 12-month CIDI/DSM-IV disorder. Twelve-month disorders included anxiety disorders (panic disorder, generalized anxiety disorder, agoraphobia without panic disorder, specific phobia, social phobia, posttraumatic stress disorder, obsessive-compulsive disorder, separation anxiety disorder), mood disorders (major depressive disorder, dysthymic disorder, bipolar disorder I or II), impulse control disorders (oppositional defiant disorder, conduct disorder, attention-deficit/hyperactivity disorder, intermittent explosive disorder), and substance use disorders (alcohol and drug abuse and dependence). The disorders assessed in part 2 include the 4 childhood disorders (separation anxiety disorder, oppositional defiant disorder, conduct disorder, and attention-deficit/hyperactivity disorder), posttraumatic stress disorder, obsessive-compulsive disorder, and the substance use disorders. As described elsewhere (Kessler et al., 2005a), blind clinical reinterviews using the Structured Clinical Interview for DSM-IV (SCID) (First et al., 2002) with a probability subsample of NCS-R respondents found generally good concordance between WMH-CIDI diagnoses and SCID diagnoses. The above disorders were the only ones assessed in the survey. Exclusion of other disorders of clinical interest (e.g., non-affective psychosis, dementia, personality disorders) is a limitation.

Level of severity

Twelve-month cases were classified as serious if they had any of the following: a 12-month suicide attempt with serious lethality intent; work disability or substantial limitation due to a mental or substance disorder; positive screen results for non-affective psychosis; bipolar I or II disorder; substance dependence with serious role impairment, as defined by scores in the “severe” or “very severe” range on disorder-specific versions of the Sheehan Disability Scale (Leon et al., 1997); an impulse control disorder with repeated serious violence; or any disorder that resulted in ≥30 days out of role in the last year. Cases not defined as serious were defined as moderate if they had any of the following: suicide gesture, plan, or ideation; substance dependence without serious role impairment; at least moderate work limitation due to a mental or substance disorder; or any disorder with at least “moderate” role impairment in ≥2 domains of the Sheehan Disability Scale. All other cases were classified as mild. As reported elsewhere (Kessler et al., 2005b), mean number of days in the past 12 months that respondents were completely unable to carry out their normal daily activities because of mental or substance use problems was 88.3 among respondents classified as having a serious condition, 4.7 among those classified as having a moderate, and 1.9 among those classified as having a mild condition (F_{2, 5689}=17.7; p<.001).

Socio-demographic predictor variables

Socio-demographic variables included age (18–34, 35–49, 50–64, 65+), sex, race-ethnicity (non-Hispanic white, Hispanic, non-Hispanic black, other), years of education (0–11, 12, 13–15, 16+), family income in relation to the federal poverty level (Proctor & Dalaker, 2001) (low [≤1.5 times the poverty line], low average [>1.5–3 times the poverty line], high average [>3–6 times the poverty line], high [≥6 times the poverty line]), and marital status (married/cohabitating, separated/widowed/divorced, never married).

Analysis methods

The NCS-R data were weighted to adjust for differences in selection probabilities, differential non-response, and residual differences between the sample and the US population on socio-demographic variables. An additional weight was used in the Part 2 sample to adjust for the over-sampling of Part 1 respondents (Kessler et al., 2004). All descriptive statistics are based on these weighted data. Analyses of reasons for not initiating treatment or continuing treatment were conducted in three stages. First, reasons were examined and compared in the total group of respondents with any 12 month disorder as well as separately in subgroups defined by severity. Second, analyses of reasons other than those involving lack of need were repeated among respondents who reported perceived need for treatment. Third, multivariate logistic regression models were used to examine variation in reasons for not seeking treatment associated with socio-demographic characteristics and severity of illness. Three main-effect models were estimated, one for each of the three broad categories of reasons (low perceived need, any structural barrier, any attitudinal/evaluative barrier). These multivariate analyses were then repeated with the addition of interaction terms between severity and each socio-demographic characteristic to examine whether the association of each socio-demographic factor with each type of barrier was uniform regardless of level of severity. Logistic regression coefficients and their standard errors were exponentiated and reported as odds-rations (OR) and 95% confidence intervals (CI).

Standard errors were calculated using the Taylor series method implemented in the SUDAAN software package (Research Triangle Institute, 2002) to adjust for clustering and weighting of data. Multivariate significance tests were conducted using Wald χ² tests based on coefficient variance–covariance matrices adjusted for design effects using the Taylor series method. Statistical significance was evaluated using two-sided design-based tests and the p<0.05 level of significance. Only when multivariate significance tests were significant did we interpret the significance of individual coefficients. This decision rule was used to guard against the possibility of false positive coefficients in an analysis that made a large number of individual tests. It is important to note, though, that although use of omnibus tests reduces the chance of false positive findings, the only definitive protection against this problem is replication in independent datasets.

RESULTS

Reasons for not seeking treatment

Somewhat more than half (55.2%) of the 1,350 Part II NCS-R respondents who met criteria for at least one 12-month DSM-IV/CIDI disorder but did not use any 12-month services reported that they might have needed to see a professional for mental health problems. This perception of need was significantly associated with severity of psychopathology (χ²₂ = 52.0 p < .001), with 74.1% of nonusers who had a severe disorder reporting perceived need compared to 60.7% of those who had a moderately severe disorder and 43.0% of those who had a mild disorder. Low perceived need was the most commonly reported barrier to treatment across levels of severity. (Table 1) Over and above the effects of global measures of disorder severity, generalized anxiety disorder was the only individual disorder that predicted perceived need significantly, with an OR of 1.8 (95% CI: 1.1–2.9, p = .020). Among respondents who recognized a need for treatment, in comparison, the desire to handle the problem on one's own was the most commonly reported reason for not seeking treatment (72.6%), while attitudinal/evaluative barriers were much more commonly reported (97.4%) than structural barriers (22.2%). Reported reasons for not seeking treatment varied significantly across severity levels, with low perceived need more commonly reported by respondents with mild than moderate or severe disorders compared to structural and most attitudinal/evaluative barriers being reported by a higher proportion of respondents with perceived need who had severe or moderate than mild conditions.

Table 1

Reported reasons for not seeking treatment by level of severity of disorder among respondents with 12-month DSM-IV disorders who did not seek treatment at any time in the past 12 months

The joint effects of socio-demographic variables and severity were significant as a set in predicting both low perceived need (χ²₁₇ =159.9, p < .001) and structural barriers among respondents with perceived need (χ²₁₇ = 53.6, p < .001) but not attitudinal/evaluative barriers among respondents with perceived need (χ²₁₇ = 9.9, p = .54). (Table 2) The failure to find significant predictors of attitudinal/evaluative barriers presumably reflects the fact that virtually every respondent with perceived need reported at least one such barrier (97.4%; detailed results for this model can be found in Appendix C). Age (65+ compared to 18–64), sex (males compared to females), education (0–11 vs. 16+ years), and severity (mild vs. moderate-severe) were significant predictors of low perceived need. Age (18–49 vs. 50+) and severity (severe vs. mild-moderate) were significant predictors of structural barriers.

Table 2

Socio-demographic and severity predictors of reported reasons for not seeking treatment among respondents with 12-month DSM-IV disorders who did not seek treatment at any time in the past 12 months^a

We also evaluated interactions between each socio-demographic variable and severity in predicting perceived need and structural barriers. The 30 interactions (15 socio-demographic variables × two severity variables) were significant as a set in each of the two equations (χ²₃₀ = 74.1, p < .001 predicting perceived need and = 163.0, p < .001 predicting structural barriers), although none of the more specific interactions between individual socio-demographics and severity was significant in predicting perceived need. Two of these specific interactions were significant, though, in predicting structural barriers. These involved race-ethnicity (χ²₃ = 25.7, p < .001) and marital status (χ²₂ = 9.5, p = .023). (Detailed results are available in Appendix D.) In the case of race-ethnicity, the elevated OR of structural barriers among Hispanics compared to Non-Hispanic Whites was found to be confined to mild-moderate cases. In the case of marital status, married/cohabiting respondents were found to have a significantly elevated OR of structural barriers compared to the never married among mild cases but not moderate-severe cases.

Reasons for dropping out of treatment

A total of 851 respondents with 12-month disorders reported receiving treatment at some time in the past 12 months, of whom a weighted 10.6% (n = 78 actual respondents) reported dropping out of treatment in all service sectors where they received treatment. Wanting to handle the problem on one's own was the most commonly-reported reason for dropping out of treatment (42.2%) followed by perceived improvement in mental health (31.2%). (Table 3) Although disorder severity was not significantly related to any of the reported reasons for dropout (χ²₂ = 0.5–5.6, p = .06–.78), respondents with severe disorders reported a significantly higher mean number of reasons (2.3) than those with moderately severe (2.0) or mild (1.3) disorders (F_2,848 = 7.1, p= .002). In multivariate analyses (data not shown but available in Appendix E), a standardized continuous measure of income was the only significant socio-demographic predictor of reporting attitudinal/evaluative barriers. This association was negative (OR: 0.2, 95% CI: 0.1–0.7; χ²₁ = 7.5, p = .006) and persisted when the sample was limited to respondents who perceived a need for continued treatment (OR: 0.1, 95% CI: 0.0–0.4, χ²₁ = 8.6, p = .003).

Table 3

Reported reasons for dropping out of treatment by level of severity of disorder among respondents with 12-month DSM-IV disorders dropped out of treatment in the past 12 months

CONCLUSION

This study had several noteworthy limitations. First, results are subject to recall bias because disorders, treatments, and reasons were all assessed retrospectively over a 12-month recall period with self-report. It is noteworthy in this regard that self-reports of service use tend to underestimate service use reported in administrative records (Clark et al., 1996; Jobe et al., 1990; Kashner et al., 1999; Petrou et al., 2002; Ritter et al., 2001), although the underestimation of more recent service use tends to be modest (Clark et al., 1996; Petrou et al., 2002). Second, the list of reasons for not seeking treatment and dropout was limited to those reported most commonly in past research and elicited in qualitative interviews carried out to expand these earlier lists. Some individuals may have had other reasons for not initiating treatment or dropping out that were not included in our lists. In addition, some reason statements were ambiguous or double-barreled (e.g., “The problem went away by itself, and I did not really need help”) and were aggregated into rational categories in ways that could be debated. Furthermore, the reliability of self-reports of reasons for not seeking treatment has not been assessed. Third, with regard to reasons involving severity and change in severity (problem was not severe; problem went away), the analysis was limited by not having information on duration, which was almost certainly related to these reports and would be expected to be a strong predictor of seeking treatment.

Another weakness is that the analysis of treatment dropout had low power due to the small number of respondents defined as having dropped out of treatment. This may have been due to the stringent definition of drop-out we used, which classified respondents as having dropped out only they dropped out of treatment from all sectors in which they obtained treatment. A total of 81 respondents with a 12-month DSM-IV disorder dropped out of one or more types of treatments but stayed in some other type of treatment. We did not classify these respondents as having dropped out based on the fact that some number of them was presumably referred to a new treatment provider by their original provider or switched rather than dropped out of treatment. These 81 respondents did not differ significantly with regard to severity from those who stayed in the same type of treatment, but both groups were more severe than those who we defined as having dropped out. Given that this group is relatively large, it would be useful for future research to evaluate reasons for switching treatments among respondents of this type.

A final noteworthy limitation is that respondents who reported 12-month service use in one of the disorder-specific diagnostic sections but not in the general service section were not included in the analysis. There were 149 such individuals. These respondents were inconsistent in their reports, making it difficult to know how to classify them. Had we been aware of this inconsistency at the time of designing the interview, we could have included these cases by placing the general services section later in the interview and including respondents who reported disorder-specific treatment. It would be fairly easy to correct this problem in future surveys. Similar inconsistencies between reports of service use when assessed globally vs. separately after assessing each condition have been reported in other surveys (Duan et al., 2007).

In the context of these limitations, the data provide a broad overview of perceived barriers to initiation and continuation of mental health treatments in the United States. Three patterns are especially noteworthy. First, low perceived need for treatment was a common reason for not seeking treatment, with attitudinal/evaluative reasons much more common than structural barriers among people with perceived need. This pattern is consistent with previous findings from the US and other settings in the 1990s (Sareen et al., 2007) and suggests that low perceived need has remained a key barrier to seeking treatment for mental disorders.

Second, reasons for not seeking treatment varied significantly across levels of illness severity, with respondents who had more severe disorders being significantly less likely to report low perceived need as a barrier and significantly more likely to report structural and attitudinal/evaluative barriers than people with less severe disorders. These findings are consistent with findings from past research on the association of severity of illness with barriers to seeking treatment for mental disorders (Drapalski et al., 2008, Wang et al., 2007b). The disjunction between perceived need and our measure of severity highlights the fact that personal evaluations of perceived need do not fully capture objectively measured need. Notably, over one-quarter of respondents with severe psychopathology did not perceive a need for treatment and one in four of those who did perceive a need reported that they thought that the problem was not severe or that it would get better on its own. Furthermore, two-thirds of respondents with severe disorders who perceived a need for treatment and did not seek treatment, and more than one-half of respondents who dropped out, reported a wish to handle their problems on their own as a reason for not seeking treatment or dropping out. These results are consistent with an extensive clinical literature documenting a significant association between illness insight and treatment acceptance/adherence among patients with serious mental illness (Buckley et al., 2007). Results such as these point to the importance of efforts to educate the public at large and patients about indicators of serious psychopathology and appropriate treatment options (Hickie, 2004; Highet et al., 2006; Jorm et al., 2005, 2006; Paykel et al., 1997).

Third, over one-third of respondents who dropped out of treatment cited an attitudinal/evaluative barrier such as stigma, negative experience with providers, or perceived ineffectiveness of treatment, that show low perceived treatment quality leads to treatment dropout. It is sadly ironic that among those who dropped out of treatment, patients with severe psychopathology were more likely than those with less severe disorders (albeit at a statistically insignificant level) to report attitudinal/evaluative obstacles to treatment, as those with the most severe conditions are likely to be in greatest need for treatment and potentially stand to benefit most from care. This finding points to the need to improve quality of mental health services for adults with severe mental disorders in the United States to better address the individual needs and preferences of this patient group (Adams & Drake, 2006).

It is also noteworthy that the reasons for not seeking treatment differed by respondent socio-demographic characteristics. Most notably, young and middle-aged adults were less likely than older adults to report a lack of perceived need for treatment but more likely to report structural and attitudinal/evaluative barriers to treatment seeking after they perceived a need. The effect of age may partly be explained by differences in access to care and lifestyle. Respondents ages 65+ typically are covered by a Medicare financed health plan and are more likely than younger people to be retired. Thus, they may be less likely than their younger peers to experience financial and time barriers to seeking treatment. Furthermore, younger people tend to have a less positive attitude toward mental health treatment seeking, although this pattern has been changing in recent years (Mojtabai, 2007).

Females compared to males and respondents with low compared to high education were less likely to report lack of perceived need as a reason for not seeking treatment. While past research generally supports an association between female gender and greater perceived need for mental health treatment (Meadows et al., 2002, Sareen et al., 2010), the association with education is puzzling and may suggest that formal education by itself does not significantly promote recognition of mental health care needs. The finding that married/cohabiting respondents had an elevated OR of reporting structural barriers, but only among mild cases, might reflect the fact that married people have more family responsibilities than single people that place demands on their time and financial resources, thereby creating barriers to seeking treatment that are only overcome when disorders become relatively serious. The finding that high income was associated with low odds of dropping out of treatment for attitudinal/evaluative reasons is consistent with earlier reports that high income is associated with positive attitudes toward mental health treatment (Mojtabai, 2007). This might be due to a higher quality of services accessible to individuals from higher income groups or more attitudes related to more general perceptions of medical care.

The results reported here reinforce other evidence that low rates of seeking treatment for common mental disorders remains a major public health problem in the United States (Gonzalez et al., 2010). The President's New Freedom Commission on Mental Health recommended a campaign to improve treatment seeking by reducing the stigma associated with mental disorders and their treatments (President's New Freedom Commission on Mental Health, 2005). The 2008 mental health parity legislation has also sought to reduce financial barriers to accessing such treatments. The results of the current study show, consistent with these recommendations, that both attitudinal/evaluative and structural barriers are significant impediments to treatment seeking in the US. However, we also found that low perceived need is an even more important barrier. This might well reflect the fact that most of the mental disorders considered here are extreme variants on normal patterns of emotion, cognition, and behavior that are difficult for many people to see as distinct from the normal patterns. Our results suggest that new public education initiatives are needed to increase recognition of mental illness in conjunction with the efforts currently underway to reduce stigma and financial barriers.

ACKNOWLEDGEMENTS

The National Comorbidity Survey Replication (NCS-R) is supported by the National Institute of Mental Health (NIMH; U01-MH60220) with supplemental support from the National Institute on Drug Abuse (NIDA), the Substance Abuse and Mental Health Services Administration (SAMHSA), the Robert Wood Johnson Foundation (RWJF; Grant 044780), and the John W. Alden Trust. Collaborating NCS-R investigators include Ronald C. Kessler (Principal Investigator, Harvard Medical School), Kathleen Merikangas (Co-Principal Investigator, NIMH), James Anthony (Michigan State University), William Eaton (The Johns Hopkins University), Meyer Glantz (NIDA), Doreen Koretz (Harvard University), Jane McLeod (Indiana University), Mark Olfson (New York State Psychiatric Institute, College of Physicians and Surgeons of Columbia University), Harold Pincus (University of Pittsburgh), Greg Simon (Group Health Cooperative), Michael Von Korff (Group Health Cooperative), Philip S. Wang (NIMH), Kenneth Wells (UCLA), Elaine Wethington (Cornell University), and Hans-Ulrich Wittchen (Max Planck Institute of Psychiatry; Technical University of Dresden). The views and opinions expressed in this report are those of the authors and should not be construed to represent the views of any of the sponsoring organizations, agencies, or U.S. Government. A complete list of NCS publications and the full text of all NCS-R instruments can be found at http://www.hcp.med.harvard.edu/ncs. Send correspondence to ncs/at/hcp.med.harvard.edu.

The NCS-R is carried out in conjunction with the World Health Organization World Mental Health (WMH) Survey Initiative. We thank the staff of the WMH Data Collection and Data Analysis Coordination Centres for assistance with instrumentation, fieldwork, and consultation on data analysis. These activities were supported by the National Institute of Mental Health (R01 MH070884), the John D. and Catherine T. MacArthur Foundation, the Pfizer Foundation, the US Public Health Service (R13-MH066849, R01-MH069864, and R01 DA016558), the Fogarty International Center (FIRCA R03-TW006481), the Pan American Health Organization, Eli Lilly and Company, Ortho-McNeil Pharmaceutical, Inc., GlaxoSmithKline, and Bristol-Myers Squibb. A complete list of WMH publications can be found at http://www.hcp.med.harvard.edu/wmh/.

Declaration of interest: During the past 3 years, Dr. Olfson has received research funding from Eli Lilly & Company, Ortho-McNeil Pharmaceuticals, Bristol Myers Squibb, and AstraZeneca Pharmaceuticals. He has also served as a consultant for Eli Lilly & Company, Pfizer, Janssen, and AstraZeneca Pharmaceuticals. Dr. Druss has worked as a consultant for Pfizer, Inc. Dr. Kessler has been a consultant for AstraZeneca, Analysis Group, Bristol-Myers Squibb, Cerner-Galt Associates, Eli Lilly & Company, GlaxoSmithKline Inc., HealthCore Inc., Health Dialog, Integrated Benefits Institute, John Snow Inc., Kaiser Permanente, Matria Inc., Mensante, Merck & Co, Inc., Ortho-McNeil Janssen Scientific Affairs, Pfizer Inc., Primary Care Network, Research Triangle Institute, Sanofi-Aventis Groupe, Shire US Inc., SRA International, Inc., Takeda Global Research & Development, Transcept Pharmaceuticals Inc., and Wyeth-Ayerst; has served on advisory boards for Appliance Computing II, Eli Lilly & Company, Mindsite, Ortho-McNeil Janssen Scientific Affairs, and Wyeth-Ayerst; and has had research support for his epidemiological studies from Analysis Group Inc., Bristol-Myers Squibb, Eli Lilly & Company, EPI-Q, GlaxoSmithKline, Johnson & Johnson Pharmaceuticals, Ortho-McNeil Janssen Scientific Affairs., Pfizer Inc., Sanofi-Aventis Groupe, and Shire US, Inc. A full conflict of interest statement from Dr. Pincus is on the following page. The remaining authors report no conflict of interest.

Appendix A

Reasons for not seeking treatment

Reasons	CIDI Questions
Low perceived need:
Low perceived need for treatment	The problem went away by itself, and I did not really need help.
Structural barriers:
Financial	My health insurance would not cover this type of treatment.
Financial	I was concerned about how much money it would cost.
Availability	I was unsure about where to go or who to see.
Availability	I could not get an appointment.
Transportation	I had problems with things like transportation, childcare, or scheduling that would have made it hard to get to treatment
Inconvenient	I thought it would take too much time or be inconvenient.
Attitudinal barriers:
Wanted to handle on own	I wanted to handle the problem on my own.
Perceived ineffectiveness	I didn't think treatment would work.
	I was not satisfied with available services.
	I received treatment before and it did not work.
Stigma	I was concerned about what others might think if they found out I was in treatment.
Stigma	I was scared about being put into a hospital against my will.
Thought would get better	I thought the problem would get better by itself.
Problem was not severe	The problem didn't bother me very much.

Appendix B

Reasons for dropping out of treatment

Reasons	CIDI Question
Low perceived need:
You didn't need help anymore.	You didn't need help anymore.
Structural barriers:
Financial	Treatment was too expensive.
Financial	Your health insurance would not pay for more treatment.
Availability	You moved.
Availability	The therapist or counselor left or moved away.
Inconvenient or transportation	The policies were a hassle.
Inconvenient or transportation	There were problems with lack of time, schedule change, or lack of transportation.
Attitudinal barriers:
Wanted to handle on own	You wanted to handle the problem on your own.
Perceived Ineffectiveness	You were not getting better.
Stigma	You were concerned about what people would think if they found out you were in treatment.
	You felt out of place.
	Your family wanted you to stop.
Negative Experience with provider	You had bad experiences with the treatment providers.
Negative Experience with provider	You were treated badly or unfairly.
The problem got better	You got better.

Appendix C

Socio-demographic and severity predictors of reported attitudinal barriers for not seeking treatment among respondents with 12-month DSM-IV disorders who did not seek treatment at any time in the past 12 months^a

	Any Attitudinal Barrier among those who recognized the need for treatment
	OR	(95% CI)	χ ²	P

Age (≥65, reference)
Age 18–34	0.7	(0.3–1.6)	1.0	0.608
Age 35–49	0.6	(0.1–3.0)	.	.
Age 50–64	.^b		.	.
Sex (male, reference)
Female	0.6	(0.2–2.3)	0.5	0.479
Race (white, reference)
Hispanic	.^b		0.1	0.727
Non-Hispanic black	0.8	(0.3–2.4)	.	.
Other	.^b		.	.
Education (>15, reference)
0 – 11 years	.		0.0	0.888
12 years	0.9	(0.4–2.5)	.	.
13–15 years	.		.	.
Income (high, reference)
Low income	0.5	(0.1–2.7)	0.8	0.675
Low-average income	0.5	(0.1–2.8)	.	.
High-average income	.^b		.	.
Marital Status (never married, reference)
Married/cohabitating	0.6	(0.1–3.0)	1.2	0.554
Separated/widowed/divorced	0.9	(0.1–7.4)	.	.
Severity (mild, reference)
Severe	2.1	(0.3–16.4)	0.6	0.760
Moderate	1.3	(0.4–4.5)	.	.
Global Chi-square (17 df test)	.		9.9	0.544

^aAnalyses adjusted for number of 12 month mood disorders, number of 12 month anxiety disorders, number of 12 month substance disorders and number of 12 month externalizing disorders.

^bCollapsed with the reference category due to the small number of respondents in the cells.

Appendix D

Interaction model of socio-demographic and severity predictors of reported reasons for not seeking treatment among respondents with 12-month DSM-IV disorders who did not seek treatment at any time in the past 12 months^a

	Low Perceived Need					Any Structural Barrier among those who recognized the need for treatment					Any Attitudinal Barrier among those who recognized the need for treatment
	OR	(95% CI)		χ ²	p-val	OR	(95% CI)		χ ²	p-val	OR	(95% CI)		χ ²	p-val

Age (main effects)
18–34	0.4	0.2	1.0	7.0	0.072	13.3	1.8	98.4	7.7	0.021	0.6	0.2	2.1	0.6	0.732
35–49	0.7	0.3	1.7	.	.	8.1	0.9	76.3	.	.	0.7	0.1	4.9	.	.
50–64	0.9	0.4	1.8	.	.	.^b	.	.	.	.	.^b	.	.	.	.
Gender (main effects)
female	0.7	0.4	1.0	4.8	0.028	1.7	0.6	4.7	1.0	0.324	0.8	0.2	3.9	0.1	0.753
Race (main effects)
Hispanic	1.2	0.6	2.5	0.8	0.843	8.0	2.2	28.8	10.9	0.012	.^b	.	.	.	.
Black	1.2	0.6	2.4	.	.	1.7	0.4	8.6	.	.	1.0	0.3	2.8	0.0	0.943
Other	1.4	0.6	3.3	.	.	1.8	0.4	8.4	.	.	.^b	.	.	.	.
Education (main effects)
0–11 years	0.4	0.2	0.9	11.2	0.011	0.9	0.1	6.0	1.2	0.766	.^b	.	.	.	.
12 years	0.9	0.4	1.8	.	.	1.3	0.4	4.9	.	.	1.7	0.4	6.4	0.6	0.452
13–15 years	1.5	0.8	2.7	.	.	0.6	0.1	3.4	.	.	.^b	.	.	.	.
Income (main effects)
low	1.5	0.8	2.8	3.8	0.289	1.4	0.2	8.7	0.4	0.933	1.1	0.2	6.1	1.6	0.460
low-average	1.1	0.5	2.2	.	.	1.7	0.3	8.6	.	.	0.5	0.1	2.9	.	.
high-average	1.5	0.9	2.3	.	.	1.3	0.3	5.7	.	.	.^b	.	.	.	.
Marital (main effects)
married/cohabitating	0.8	0.4	1.8	0.3	0.864	4.7	1.8	12.3	10.3	0.006	0.6	0.1	3.4	0.6	0.738
separated/widowed/divorced	0.7	0.2	2.4	.	.	2.0	0.8	4.6	.	.	1.0	0.1	8.7	.	.
WMH_severity (main effects)
severe	0.8	0.1	6.9	0.2	0.917	178.5	5.4	5887.8	9.0	0.011	2.9	0.3	30.5	1.4	0.490
moderate	1.3	0.2	8.0	.	.	16.7	0.9	304.0	.	.	3.6	0.3	44.6	.	.
Age*Severity
Age 18–34 * Severe	1.1	0.4	3.1	9.0	0.111	0.2	0.0	1.9	4.7	0.315	.^b	.	.	.	.
Age 35–49 * Severe	0.5	0.2	1.7	.	.	0.4	0.0	5.3	.	.	0.3	0.0	9.2	0.5	0.796
Age 50–64 * Severe	.^a					.^b					.^b
Age 18–34* Moderate	0.7	0.2	2.9	.	.	0.2	0.0	1.3	.	.	1.0	0.2	5.7	.	.
Age 35–49 * Moderate	0.4	0.1	1.6	.	.	0.2	0.0	3.2	.	.	.^b	.	.	.	.
Age 50–64 * Moderate	0.4	0.1	1.2	.	.	.^b	.	.	.	.	.^b	.	.	.	.
Sex*Severity
Female * Severe	1.3	0.6	2.9	1.3	0.534	0.4	0.1	1.6	2.7	0.255	.^b	.	.	.	.
Female * Moderate	1.4	0.7	2.8	.	.	1.0	0.3	3.4	.	.	0.7	0.1	5.7	0.2	0.700
Race*Severity
Hispanic * Severe	0.7	0.2	2.1	6.2	0.405	0.1	0.0	0.3	25.7	0.000	.^b	.	.	.	.
Black * Severe	1.5	0.5	4.6	.	.	0.4	0.1	2.4	.	.	.^b	.	.	.	.
Other * Severe	0.4	0.1	1.3	.	.	1.5	0.3	8.5	.	.	.^b	.	.	.	.
Hispanic * Moderate	0.9	0.4	2.0	.	.	0.4	0.1	1.3	.	.	.^b	.	.	.	.
Black * Moderate	0.9	0.4	2.2	.	.	0.9	0.1	5.5	.	.	.^b	.	.	.	.
Other * Moderate	0.6	0.1	2.5	.	.	0.6	0.1	4.7	.	.	.^b	.	.	.	.
Education*Severity
0–11 years * Severe	3.3	0.8	13.8	11.0	0.088	1.5	0.1	16.4	4.5	0.608	.^b	.	.	.	.
12 years * Severe	1.1	0.2	6.0	.	.	0.9	0.1	5.7	.	.	.^b	.	.	.	.
13–15 years * Severe	0.5	0.1	2.3	.	.	4.8	0.4	51.5	.	.	.^b	.	.	.	.
0–11 years * Moderate	0.8	0.3	2.0	.	.	1.7	0.2	15.1	.	.	.^b	.	.	.	.
12 years * Moderate	0.8	0.3	2.1	.	.	0.8	0.2	4.1	.	.	0.3	0.1	1.3	2.7	0.098
13–15 years * Moderate	0.7	0.3	1.3	.	.	1.7	0.3	10.1	.	.	.^b	.	.	.	.
Income*Severity
Low income * Severe	0.6	0.2	2.2	2.4	0.884	0.3	0.0	2.0	3.1	0.795	.^b	.	.	.	.
Low-average income * Severe	0.8	0.2	3.7	.	.	0.2	0.0	2.1	.	.	.^b	.	.	.	.
High-average income * Severe	0.6	0.2	2.020	.	.	0.3	0.1	2.060	.	.	.^b	.	.	.	.
Low income * Moderate	0.9	0.3	2.5	.	.	0.7	0.1	6.6	.	.	0.2	0.0	2.1	1.8	0.174
Low-average income * Moderate	1.2	0.4	3.3	.	.	0.6	0.1	4.5	.	.	.^b	.	.	.	.
High-average income * Moderate	0.8	0.3	1.9	.	.	0.8	0.1	5.1	.	.	.^b	.	.	.	.
Marital Status*Severity
Married/cohabitating * Severe	0.7	0.3	1.9	1.7	0.800	0.2	0.1	0.9	9.5	0.023	1.0	0.0	26.5	0.3	0.877
Separated/widowed/divorced *	0.7	0.2	2.8	.	.	0.2	0.1	1.0	.	.	.^b	.	.	.	.
Severe
Married/cohabitating * Moderate	1.2	0.4	3.2	.	.	0.3	0.1	0.9	.	.	1.5	0.3	8.1	.	.
Separated/widowed/divorced *	0.8	0.2	3.1	.	.	.^b	.	.	.	.	.^b	.	.	.	.
Moderate
Global significance for main effects	.	.	.	86.3	0.000	.	.	.	49.4	0.000	.	.	.	18.4	0.072
Global significance for interaction effects	.	.	.	74.1	0.000	.	.	.	163.0	0.000	.	.	.	14.0	0.052

^aAnalyses adjusted for number of 12 month mood disorders, number of 12 month anxiety disorders, number of 12 month substance disorders and number of 12 month externalizing disorders.

^bCollapsed with the reference category due to the small number of respondents in the cells.

Appendix E

Socio-demographic and severity predictors of reasons for dropping out of treatment among respondents with 12-month DSM-IV disorders who reported receiving treatement in the past 12 months¹

	Any Need Barrier				Any Structural Barrier				Any Psychological Barrier
	OR	(95% CI)	χ ²	p-val	OR	(95% CI)	χ ²	p-val	OR	(95% CI)	χ ²	p-val

Age
Age	0.9	(0.9–1.0)	3.6	0.059	1.0	(1.0–1.1)	0.4	0.539	1.1	(1.0–1.2)	1.4	0.229
Sex
Female	0.6	(0.2–2.5)	0.5	0.487	1.4	(0.4–4.9)	0.3	0.606	2.2	(0.4–13.9)	0.8	0.373
Race
Hispanic/black/other	0.6	(0.1–4.1)	0.3	0.615	1.1	(0.2–4.7)	0.0	0.932	1.1	(0.2–6.1)	0.0	0.882
Education
Continuous education	1.1	(0.8–1.5)	0.2	0.661	1.1	(0.8–1.3)	0.3	0.607	1.3	(0.9–1.8)	2.3	0.127
Income
Continuous income	1.4	(0.5–4.4)	0.4	0.525	0.6	(0.2–1.9)	0.7	0.397	0.2	(0.1–0.7)	7.5	0.006
Marital Status
Married/cohabitating	3.8	(0.7–19.7)	2.8	0.252	1.5	(0.4–5.7)	1.6	0.446	0.1	(0.0–2.2)	3.5	0.178
Separated/widowed/divorced	3.3	(0.2–49.6)	.	.	0.4	(0.0–3.5)	.	.	0.7	(0.0–25.9)	.	.
Married/cohabitating/previously
married	.	.	.	.	.	.	.	.	.	.	.	.
Severity
Severe	0.2	(0.0–2.7)	2.4	0.301	10.2	(0.5–210.5)	2.8	0.246	6.8	(0.7–63.0)	3.5	0.170
Moderate	0.6	(0.1–7.9)	.	.	8.6	(0.6–120.0)	.	.	1.9	(0.2–17.3)	.	.

Controls: number of 12 month mood disorders, number of 12 month anxiety disorders, number of 12 month substance disorders, number of 12 month external disorders

Appendix F

Diagnostic distribution of NCS-R part 2 respondents according to service use

	Among respondents with any 12-mo disorders and are in treatment N=851			Among respondents with any 12-mo disorders and are NOT in treatment N=1,350
12-Month DSM-IV disorders	N	%	(se)	N	%	(se)

Major Depressive Disorder	401	46.0	(2.3)	335	21.5	(1.3)
Bipolar	130	15.0	(1.2)	112	8.1	(0.8)
Dysthymia	121	13.7	(1.3)	80	5.2	(0.6)
Panic Disorder	140	16.8	(1.4)	93	6.0	(0.7)
Agoraphobia	73	7.9	(1.2)	56	3.9	(0.5)
Social Phobia	257	28.7	(1.7)	356	24.8	(1.5)
Specific Phobia	273	31.4	(1.5)	487	33.9	(2.0)
General Anxiety Disorder	203	22.7	(1.3)	155	10.0	(0.9)
Post-Traumatic Stress Disorder	170	19.7	(1.6)	129	9.3	(1.0)
Adult Separation Anxiety Disorder	65	8.5	(1.1)	76	5.9	(0.8)
Intermittent Explosive Disorder	115	13.4	(1.3)	244	17.5	(1.5)
Conduct Disorder	14	2.6	(0.8)	15	3.0	(1.0)
Oppositional-Defiant Disorder	25	4.1	(0.9)	22	2.8	(0.7)
Attention Deficit/Hyperactivity Disorder	84	14.9	(1.6)	80	9.4	(1.2)
Anorexia	0	0.0	(0.0)	0	0.0	(0.0)
Bulimia	5	0.7	(0.4)	10	1.3	(0.5)
Binge Eating	24	5.2	(1.0)	25	4.1	(0.9)
Alcohol Dependence	47	6.3	(0.9)	53	4.3	(1.0)
Alcohol abuse	79	10.7	(1.2)	135	12.0	(1.0)
Drug Dependence	15	2.1	(0.6)	19	1.3	(0.4)
Drug abuse	41	5.5	(0.9)	54	4.5	(0.6)

Dr. Pincus' Conflict of Interest and Disclosure Statement Detail

Below I have provided details regarding the source of support for my research and any consulting arrangements or sources of support for the past 3 years that may represent a potential conflict interest.

I am currently employed by (all not for profit):

Columbia University
New York-Presbyterian Hospital
RAND Corporation
University of Pittsburgh/UPMC (Employer to 6/2006)

My research has been funded by the following organizations (all not for profit):

National Institute of Mental Health
National Institute of Child Health and Human Development
National Institute on Drug Abuse
Substance Abuse and Mental Health Services Administration/ Center for Substance Abuse Treatment/Center for Mental Health Services
Veterans Administration
The Robert Wood Johnson Foundation
The John A. Hartford Foundation
Raymond John Wean Foundation
The Heinz Endowments
Atlantic Philanthropies
National Institute for Research Resources
MacArthur Foundation
UPMC Health Plan
The Highmark Foundation
Staunton Farm Foundation
FISA Foundation
The Eden Hall Foundation
Centers for Medicare and Medicaid Services
AHRQ
World Health Organization

Any commercial or financial involvements within the past 3 years that might present an appearance of a conflict of interest (e.g. institutional or corporate affiliations, paid consultancies, stock ownership or other equity interests, patent ownership, royalties, funds for travel, and interests in patents, instruments, and technologies.):

In the past 3 years, I have been a consultant for:

University of Washington
University of New Mexico
SUNY Stony Brook
Community Care Behavioral Health Organization/UPMC Health Plan
Magellan Health Care
Urban Institute
Value Options (travel only)

I have received royalties for publications (none of which involved specific products) from:

American Psychiatric Press
Current Opinion in Psychiatry/Lippincott, William and Wilkins

I have received payments for speaking (none of which involve specific products) from:

Bimark Medical Education
Comprehensive NeuroScience, Inc., Medical Information Technologies
Cardinal Health, Inc.
Health Partners
American Medical Association

Footnotes

The following paper has been accepted for publication and will appear in a revised form, subsequent to peer review and/or editorial input by Cambridge University Press, in Psychological Medicine, published by Cambridge University Press.

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