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World Psychiatry. Oct 2007; 6(3): 177–185.
PMCID: PMC2174579

Delay and failure in treatment seeking after first onset of mental disorders in the World Health Organization's World Mental Health Survey Initiative

Abstract

Data are presented on patterns of failure and delay in making initial treatment contact after first onset of a mental disorder in 15 countries in the World Health Organization (WHO)'s World Mental Health (WMH) Surveys. Representative face-to-face household surveys were conducted among 76,012 respondents aged 18 and older in Belgium, Colombia, France, Germany, Israel, Italy, Japan, Lebanon, Mexico, the Netherlands, New Zealand, Nigeria, People's Republic of China (Beijing and Shanghai), Spain, and the United States. The WHO Composite International Diagnostic Interview (CIDI) was used to assess lifetime DSM-IV anxiety, mood, and substance use disorders. Ages of onset for individual disorders and ages of first treatment contact for each disorder were used to calculate the extent of failure and delay in initial help seeking. The proportion of lifetime cases making treatment contact in the year of disorder onset ranged from 0.8 to 36.4% for anxiety disorders, from 6.0 to 52.1% for mood disorders, and from 0.9 to 18.6% for substance use disorders. By 50 years, the proportion of lifetime cases making treatment contact ranged from 15.2 to 95.0% for anxiety disorders, from 7.9 to 98.6% for mood disorders, and from 19.8 to 86.1% for substance use disorders. Median delays among cases eventually making contact ranged from 3.0 to 30.0 years for anxiety disorders, from 1.0 to 14.0 years for mood disorders, and from 6.0 to 18.0 years for substance use disorders. Failure and delays in treatment seeking were generally greater in developing countries, older cohorts, men, and cases with earlier ages of onset. These results show that failure and delays in initial help seeking are pervasive problems worldwide. Interventions to ensure prompt initial treatment contacts are needed to reduce the global burdens and hazards of untreated mental disorders.

Keywords: Treatment seeking, anxiety disorders, mood disorders, substance use disorders

Worldwide, mental disorders inflict tremendous morbidity, mortality, and impairment (1,2). Although the armamentarium of effective treatments keeps growing, few nations seem able or willing to pay for their widespread use (3). Indeed, the majority of people with recent episodes of mental illnesses continue to go untreated, even in economically- advantaged societies (4). This reality has left many nations searching for strategies to use what limited resources they do have as efficiently as possible in an effort to alleviate burden given current constraints (5).

One promising strategy is to emphasize use of treatment resources earlier in the disease courses of affected individuals, before many negative sequelae from mental illnesses develop (6). Such an approach is supported by several lines of research. Data from preclinical studies suggest that neural "kindling" can cause untreated disorders to become more frequent, spontaneous, severe, and treatment refractory (7). Epidemiologic studies suggest that school and job failure, teenage child-bearing, and early, violent, or unstable marriages are associated with early-onset untreated mental disorders (8-10). Single disorders often progress to complex comorbid disorders that are more difficult to treat and more likely to recur than less complex conditions (11). In addition, clinical trials have shown that timely intervention can prevent suicidality (12).

A crucial first step in reducing delays in seeking treatment after first onset of a mental disorder is to document the current state of affairs with regard to the delays that currently exist in the population and the predictors of those delays. Unfortunately, very little is known about initial treatment contact, as mental health services research has focused on recent treatment of current episodes rather than initial treatment of incident cases (13). However, the few existing studies that have examined initial treatment seeking have found that many lifetime cases eventually make contact, but usually after delaying years from when the disorders began (14-16).

A second critical step is identifying what nations can concretely do to shorten periods of untreated mental illness. Although countries employ a wide variety of national policies, delivery system designs, and means of financing mental health services, the impacts of these on delays in initial treatment seeking are unknown. Perhaps the only way to shed light on these impacts is to compare delays across countries with different policy, delivery system, and financing features (3,17). Unfortunately, very few such cross-national studies of delays have been conducted (14,15).

The current report begins to address these issues by analyzing data from the World Health Organization (WHO)'s World Mental Health (WMH) Initiative, a program of coordinated surveys being conducted in 28 developed and developing countries (1). We start by constructing cumulative lifetime probability of treatment contact curves to estimate probabilities of help-seeking for mental disorders and the typical duration of delays. We do so separately for 15 countries in which WMH surveys are now complete. To begin to understand potential determinants as well as developing and targeting future interventions, we also examine correlates of failure to make initial treatment contact.

METHODS

Samples

Countries with completed WMH surveys used in these analyses included Belgium, Colombia, France, Germany, Israel, Italy, Japan, Lebanon, Mexico, the Netherlands, New Zealand, Nigeria, People's Republic of China (Beijing and Shanghai), Spain and the United States. Employing designations made by the World Bank (18), China, Colombia, Lebanon, Mexico and Nigeria were categorized as less developed and the remainder as developed. Trained lay interviewers conducted all surveys face-to-face among multistage household probability samples. Individual country sample sizes ranged from 2,372 in the Netherlands to 12,992 in New Zealand, and the total sample size was 76,012. Response rates in individual countries ranged from 45.9% in France to 87.7% in Colombia and the weighted average response rate across all countries was 71.1%. Details on response rates and other design issues are presented in the paper by Kessler et al (19).

Part I of the survey contained core diagnostic assessments and was completed by all respondents. All Part I respondents who met criteria for any disorder and a sub-sample of approximately 25% of others were administered Part II, which assessed correlates, service use, and disorders of secondary interest. Details concerning the standardized survey methods (e.g., interviewer training procedures, WHO translation protocols for all study materials, and quality control procedures for interviewer and data accuracy) employed in all WMH surveys are available elsewhere (1,20,21). Informed consent was obtained prior to beginning all interviews. Informed consent procedures and human subjects safeguards were approved by the Institutional Review Boards of organizations coordinating the survey in each country.

Diagnostic assessments

The WHO's Composite International Diagnostic Interview (CIDI) Version 3.0 (22,23) was used to assess mental disorders using DSM-IV criteria. Disorders considered in this report include mood disorders (major depressive episode, dysthymia, and bipolar disorder I or II, or subthreshold bipolar disorder), anxiety disorders (panic disorder, specific phobia, social phobia, generalized anxiety disorder), and substance use disorders (alcohol and drug abuse and dependence). Lifetime prevalence and age of onset were assessed separately for each disorder (19). All diagnoses are considered with organic exclusions and without diagnostic hierarchy rules.

Blinded clinical reappraisal studies using the Structured Clinical Interview for DSM-IV (SCID) (25) have shown generally good concordance between DSM-IV diagnoses based on the CIDI 3.0 and the SCID for anxiety, mood, and substance use disorders (22). The recent clinical reappraisal studies carried out in four WMH countries (the United States, Italy, Spain, and France, with total N=468) have provided evidence for a good concordance between CIDI-3.0 diagnoses and diagnoses based on blinded re-interviews, with area under the receiver operator characteristics curve ranging between 0.71 and 0.93 for lifetime mood/anxiety disorders, and between 0.83 and 0.88 for 12- month mood/anxiety disorders (26).

Initial treatment contacts

In each CIDI diagnostic section, respondents were asked whether they ever in their life talked to a medical doctor or other professional about the disorder under investigation. When asking this question, interviewers clarified that the term "other professional" was intended to apply broadly and include a wide range such as psychologists, counselors, spiritual advisors, herbalists, acupuncturists, and any other healing professionals. Respondents who reported that they ever talked to any professional about the disorder being assessed were then asked how old they were the first time they did so. Responses to this question were used to define ages of first treatment contact. Data from WMH countries (e.g., South Africa, Ukraine) in which dis- order-specific questions about treatment were not asked are not included in this analysis.

Predictor variables

Predictors included age of onset of the disorder being assessed, cohort, and gender. Age of onset was categorized separately for each country as early (25th percentile), early- average (50th percentile), late-average (75th percentile), and late onset. Cohort was defined by age at interview and categorized as 18-34, 35-49, 50-64, 65+ years.

Analysis procedures

Estimated projections of the cumulative probability of treatment contact in the year of disorder onset and by 50 years after onset were made using the actuarial method of survival analysis (27) implemented in SAS (version 8.2, SAS Institute, Cary, N.C.). Separate curves were generated for each country. Typical durations of delay in initial treatment contact were defined as the median years from disorder onset to first treatment contact among cases that eventually made treatment contact. Correlates of treatment contact were examined separately for each disorder using discrete- time survival analysis (28) with person-year as the unit of analysis. Time-invariant predictors included age of onset of the disorder, cohort, and gender. The only time-varying predictor was the number of years since first onset of the disorder. Models were estimated among all respondents with the disorder to identify predictors of ever making treatment contact. Effects of weighting and clustering on significance tests were adjusted for using the Taylor series linearization method (29) implemented in SUDAAN (version 8.0.1, Research Triangle Institute, N.C.). Wald X2 tests using Taylor series design-based coefficient variance-covariance matrices were used to make multivariate significance tests in the discrete-time survival analyses. Statistical significance was evaluated using .05 level, two-sided tests.

RESULTS

Cumulative probabilities and median delays

in treatment contact

The first column of Table Table11 presents the proportions of lifetime cases with anxiety disorders making treatment contact in the year of disorder onset. The proportion ranged from a low of 0.8% in Nigeria to a high of 36.4% in Israel, with an inter-quartile range (IQR: 25th -75th percentiles) of 3.6-19.8%. The proportions of lifetime cases with anxiety disorders making treatment contact by 50 years are shown in the second column of Table Table11 and ranged from 15.2% in Nigeria to 95.0% in Germany (IQR 44.7-90.7%). The median duration of delay among cases with anxiety disorders that eventually made treatment contact is shown in the third column of Table Table1. Among1. Among the fraction of cases making treatment contact, delays were shortest in Israel (median delay of 3.0 years) and longest in Mexico (median delay of 30.0 years). There were statistically significant differences between countries (F15,726=95,259.7; p<0.001) and generally longer delays in developing vs. developed countries (detailed results are not reported, but are available on request).

Table 1
Proportional treatment contact in the year of onset of any anxiety disorder and median duration of delay among cases that subsequently made treatment contact

As shown in Table Table2,2, the proportions of lifetime cases with mood disorders making treatment contact in the year of disorder onset ranged from lows of 6.0% in Nigeria and China to a high of 52.1% in the Netherlands (IQR 16.0- 42.7%). The proportions of cases with mood disorders making treatment contact by 50 years ranged from 7.9% in China to 98.6% in France (IQR 56.8-96.4%). Among cases with mood disorders eventually making treatment contact, the median duration of delay was shortest in three Western European (Belgium, the Netherlands, and Spain) and two Asian (China and Japan) countries (median delay of 1.0 years in each) and longest in Mexico (median delay of 14.0 years). The delays among cases with mood disorders were significantly different across countries (F15,726=47,368.1; p<0.001) (detailed results are not reported, but are available on request). Comparison of Tables Tables11 and and22 reveals that delays were generally shorter for mood than anxiety disorders. The proportions of lifetime cases with substance use disorders making treatment contact in the year of disorder onset ranged from a low of 0.9% in Mexico to a high of 18.6% in Spain (IQR 2.8-13.2%) (see Table Table3). By3). By 50 years, the proportions of cases with substance use disorders making treatment contact ranged from 19.8% in Nigeria to 86.1% in Germany (IQR 25.7-66.6%). Cases with substance use disorders eventually making treatment contact had the shortest delays in Spain (median delay of 6.0 years) and the longest in Belgium (median delay of 18.0 years). The delays among cases with substance use disorders were significantly different across countries (F15,726=21,505.3; p<0.001) (detailed results are not reported, but are available on request). The delays among cases with substance use disorders appeared to be generally intermediate between those for mood and anxiety disorders.

Table 2
Proportional treatment contact in the year of onset of any mood disorder and median duration of delay among cases that subsequently made treatment contact
Table 3
Proportional treatment contact in the year of onset of any substance use disorder and median duration of delay among cases that subsequently made treatment contact

Correlates of lifetime treatment contact

Results from the discrete time survival models of lifetime treatment contact for anxiety disorders are shown in Table Table4. Female4. Female gender was significantly associated with a higher likelihood of making initial treatment contact in four countries. Significant, monotonic relationships between being in younger cohorts and higher probabilities of treatment contact existed in 12 out of the 13 countries with significant cohort differences. Cases with earlier ages of onset of their anxiety disorders were significantly less likely to make treatment contact in 14 countries.

Table 4
Socio-demographic predictors of lifetime treatment contact for any anxiety disorder

Correlates of lifetime treatment contact for mood disorders are shown in Table Table5.5. Female gender was significantly associated with higher likelihoods of treatment contact in three countries. Significant, generally monotonic relationships between being in younger cohorts and higher probabilities of treatment contact existed in 10 countries. Earlier ages of onset were significantly associated with lower likelihoods of making treatment contact for mood disorders in 13 countries.

Table 5
Socio-demographic predictors of lifetime treatment contact for any mood disorder

For substance use disorders, female gender was significantly associated with greater initial treatment contact in one country (see Table Table6).6). There were significant, generally monotonic relationships between being in younger cohorts and higher probabilities of initial treatment contact in eight countries. Having an earlier age of onset was significantly associated with a lower likelihood of making treatment contact for substance use disorders in eight countries.

Table 6
Socio-demographic predictors of lifetime treatment contact for any substance use disorder

DISCUSSION

Several potential limitations should be kept in mind when interpreting these results. Most important is the potential that respondents failed to recall events occurring over their lifetimes. For example, those not seeking treatment may have been more likely to forget or normalize symptoms than cases who sought treatment. Unfortunately, we cannot evaluate this possibility or whether it occurred differentially across countries. However, it is worth noting that, to the extent this occurred, we have underestimated failures and delays in initial treatment seeking.

Even when events were recalled, they may have been dated inaccurately. The most common form of dating error is telescoping, in which past experiences are recalled as having occurred more recently than they actually did. Questions that focused memory search and bounded recall uncertainty were embedded in WMH surveys to help respondents recall age of onset and age of initial treatment contact (23,30). However, to the extent these efforts were not successful, it is again likely that delays in initial treatment seeking have been underestimated.

Our examinations of contacts with providers in the prior year have revealed that many fail to result in adequate treatment (4). To the extent that initial contacts with providers also fail to result in any treatment or in adequate regimens, we have underestimated failure and delays in receipt of effective treatment. Furthermore, we were only able to study predictors of failure to make treatment contact that could be retrospectively dated. We also limited potential predictors to variables for which a priori hypotheses have been raised regarding treatment delay or failure, to reduce the possibility of chance findings (14-16).

Finally, we cannot be certain that the failures and delays in initial treatment seeking observed here are of clinical or public health significance. Alternatively, those who failed to make prompt initial contacts may have largely had self-limiting or less serious disorders (31). However, our earlier analyses of the U.S. data revealed that even those with severe and impairing disorders have substantial delays in initial treatment contact (16). Furthermore, the preclinical, epidemiologic, and trial data reviewed above suggest that even milder disorders, if left untreated, lead to greater severity, additional psychiatric comorbidity, and negative social and occupational functioning (8-10).

Keeping these limitations in mind, our results reveal two major problems in the initial treatment-seeking process for mental disorders that are occurring throughout the world. On one hand, many lifetime cases never make any treatment contact for their disorders, particularly in developing countries, where the financial and structural barriers to accessing mental health services are most formidable (3). Failure to seek help also appears to be greatest for conditions with low perceived needs for treatment, such as substance use disorders, for which over half of lifetime cases failed to make any treatment contact in the majority of countries (13,32).

Even among cases that do eventually seek help, a second major source of unmet need for mental health care is the pervasive delays before treatment contacts are made. The typical delays observed here last for years or even decades after disorder onset. Initial treatment contacts appear to be fastest for mood disorders, perhaps because these disorders have been targeted in some countries by educational campaigns, primary care quality improvement programs, and treatment advances (33-35). On the other hand, the longer delays for anxiety disorders may be due to the earlier age of onset of some conditions (e.g., phobias), fewer associated impairments, and even fear of providers or treatments involving social interactions (e.g., talking therapies, group settings, waiting rooms) (4,13,36).

Women have been shown in prior research to be faster than men at translating nonspecific feelings of distress into conscious recognition that they have emotional problems, perhaps explaining the significantly higher rates of initial treatment contact by women in some countries (37). More recent cohorts were also significantly more likely to make eventual treatment contact, perhaps suggesting a positive outcome of programs recently attempted in some countries to destigmatize and increase awareness of mental illness, of screening and outreach initiatives, of the introduction and direct-to-consumer promotion of new treatments, and of expansion of insurance programs (1,33-35,38-42). Consistent with prior research (14-16), early-onset disorders were associated with lower probabilities of initial treatment contact in most countries. One explanation for this finding may be that minors need the help of parents or other adults to seek treatment, and recognition is often low among these adults unless symptoms are severe (43,44). In addition, child and adolescent- onset mental disorders may be associated with normalization of symptoms or development of coping strategies (e.g., social withdrawal in social phobias) that interfere with help-seeking later in life. Finally, lack of accessible child mental health services may also be an important issue in many countries.

While these results document the failure and delay in initial treatment seeking for mental disorders that are occurring worldwide, additional research will be needed to clarify what policy makers can concretely do to address them at the local and national levels. At the local level, it is critical to identify whether and through what specific programs long periods of untreated mental illness can be reduced. Cost-efficient interventions that can be applied in schools, clinics, or health care systems, consisting of aggressive outreach and prompt treatment of new cases, are just emerging. Long-term intervention trials currently in the field will shed light on the extent to which these model programs prevent subsequent negative clinical, social, educational, and occupational outcomes (45,46). Programs of public education, school or primary care-based screening, disease management, or coordination and referral between non-health care and health care professions, may also prove helpful in this regard (34,38,44,47-51).

Furthermore, it will be critical to clarify what can be done at the national level to minimize failure and delay in initial treatment contact. General and mental health care policies, delivery system designs, and levels or mechanisms of financing mental health services may have enormous impacts on the timeliness of treatment seeking. Unfortunately, policy makers currently lack rigorous data on these impacts, including whether impacts are positive, negative, as intended, or inadvertent. Linking data such as those of the WHO Project Atlas on existing policies, delivery systems, and financing of mental health care, to WMH survey data on failure and delay in initial treatment, may offer a novel way to shed light on these impacts and help guide future policy decisions (3,17).

Acknowledgements

The surveys discussed in this article were carried out in conjunction with the World Health Organization's World Mental Health (WMH) Survey Initiative. We thank the WMH staff for assistance with instrumentation, fieldwork, and data analysis. These activities were supported by the United States National Institute of Mental Health (R01- MH070884), the John D. and Catherine T. MacArthur Foundation, the Pfizer Foundation, the U.S. Public Health Service (R13-MH066849, R01-MH069864, and R01-DA016558), the Fogarty International Center (FIRCA R01-TW006481), the Pan American Health Organization, Eli Lilly and Company, Ortho-McNeil Pharmaceutical, Inc., GlaxoSmithKline, and Bristol-Myers Squibb. The Chinese World Mental Health Survey Initiative is supported by the Pfizer Foundation. The Colombian National Study of Mental Health (NSMH) is supported by the Ministry of Social Protection, with supplemental support from the Saldarriaga Concha Foundation. The ESEMeD project is funded by the European Commission (Contracts QLG5-1999-01042; SANCO 2004123), the Piedmont Region (Italy), Fondo de Investigación Sanitaria, Instituto de Salud Carlos III, Spain (FIS 00/0028), Ministerio de Ciencia y Tecnología, Spain (SAF 2000-158-CE), Departament de Salut, Generalitat de Catalunya, Spain, and other local agencies, and by an unrestricted educational grant from GlaxoSmithKline. The Israel National Health Survey is funded by the Ministry of Health, with support from the Israel National Institute for Health Policy and Health Services Research and the National Insurance Institute of Israel. The World Mental Health Japan (WMHJ) Survey is supported by the Grant for Research on Psychiatric and Neurological Diseases and Mental Health (H13-SHOGAI-023, H14-TOKUBETSU- 026, H16-KOKORO-013) from the Japan Ministry of Health, Labour and Welfare. The Lebanese National Mental Health Survey (LEBANON) is supported by the Lebanese Ministry of Public Health, the WHO (Lebanon), anonymous private donations to IDRAAC, Lebanon, and unrestricted grants from Janssen Cilag, Eli Lilly, Glaxo- SmithKline, Roche, and Novartis. The Mexican National Comorbidity Survey (MNCS) is supported by the National Institute of Psychiatry Ramon de la Fuente (INPRFMDIES 4280) and by the National Council on Science and Technology (CONACyT-G30544-H), with supplemental support from the Pan American Health Organization. Te Rau Hinengaro: The New Zealand Mental Health Survey (NZMHS) is supported by the New Zealand Ministry of Health, Alcohol Advisory Council, and the Health Research Council. The Nigerian Survey of Mental Health and Wellbeing (NSMHW) is supported by the World Health Organization (Geneva), the World Health Organization (Nigeria), and the Federal Ministry of Health, Abuja, Nigeria. The US National Comorbidity Survey Replication (NCS-R) is supported by the National Institute of Mental Health (U01- MH60220), with supplemental support from the National Institute of Drug Abuse (NIDA), the Substance Abuse and Mental Health Services Administration (SAMHSA), the Robert Wood Johnson Foundation (Grant 044780), and the John W. Alden Trust.

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