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Reducing Suicide: A National Imperative 9 Barriers to Effective Treatment and Intervention The barriers to receiving effective mental health treatment are nothing short of daunting (US DHHS, 1999). This chapter describes the constellation of barriers deterring use of mental health treatment by people who are either suicidal or who have major risk factors for suicidality: a mental disorder1 or a past suicide attempt (Chapters 2, 3). A close examination of barriers to treatment is warranted by several striking findings: (1) the vast majority (90–95 percent) of people in the United States who complete suicide have a diagnosable mental disorder, yet only about half of them are diagnosed and treated appropriately (Conwell et al., 1996; Fawcett et al., 1991; Harris and Barraclough, 1997; Isometsa et al., 1994b; Robins et al., 1959); (2) many are symptomatic for several years before suicide (Fawcett et al., 1991; Shaffer and Craft, 1999); (3) many have made a past suicide attempt (Harris and Barraclough, 1997); and (4) most who complete suicide make contact with health services in the days to months before their death. Nearly 20 percent make contact with primary care providers in the week before suicide, nearly 40 percent make contact within the month before suicide (Pirkis and Burgess, 1998), and nearly 75 percent see a medical professional within their last year (Miller and Druss, 2001). Among older people, the rates are higher, with about 70 percent making contact within the month before 1 Includes alcohol and substance use disorders.
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Reducing Suicide: A National Imperative suicide (Barraclough, 1971; Miller, 1976). However, suicide victims are three times more likely to have difficulties accessing health care than people who died from other causes (Miller and Druss, 2001). These findings underscore the importance of sifting through reasons why people escape detection or fail to receive adequate diagnosis and treatment for risk factors and suicidality. They also underscore the importance of taking a broad view of barriers—focusing on suicidality, as well as on risk factors—because their treatment is so intertwined. The barriers discussed in this chapter collectively weigh against treatment. Each barrier is unlikely to act in isolation, but likely interacts with and reinforces the others. The complex relationship of various precipitative, exacerbative, and maintenance effects of barriers is unique in each clinical case. Deeper and more nuanced understanding of the multiple barriers to treatment is essential for design, development, and implementation of preventive interventions. Prospective longitudinal studies can help to elucidate relationships among barriers as they change across the life-span and across the development of suicidality. The chapter works its way from general to more specific barriers. It first looks broadly at barriers to treatment—such as stigma, cost, and the fragmented organization of mental health services. It then covers barriers raised within a range of therapeutic settings—by both clinician and patient. Finally, the chapter focuses on barriers for groups at greatest risk for suicide: older people, adolescents, certain ethnic populations, and incarcerated persons. GENERAL BARRIERS TO TREATMENT Stigma and Discrimination The stigma of mental illness is one of the foremost barriers deterring people who need treatment from seeking it (US DHHS, 1999). About two-thirds of people with diagnosable mental disorders do not receive treatment (Kessler et al., 1996; Regier et al., 1993; US DHHS, 1999). Stigma toward mental illness is pervasive in the United States and many other nations (Bhugra, 1989; Brockington et al., 1993; Corrigan and Penn, 1998). Stigma refers to stereotypes and prejudicial attitudes held by the public. These pejorative attitudes induce them to fear, reject, and distance themselves from people with mental illness (Corrigan and Penn, 1998; Hinshaw and Cicchetti, 2000; Penn and Martin, 1998). The stigma of mental illness is distinct from the stigma surrounding the act of suicide itself. The stigma of mental illness deters people from seeking treatment for mental illness, and thereby creates greater risk for suicide. The stigma surrounding suicide is thought to act in the opposite direction—to deter
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Reducing Suicide: A National Imperative people from completing suicide.2 A prominent nationally representative survey conducted in the early 1990s found that 44 percent of Americans are opposed to suicide under any circumstances; most of the remainder are opposed to suicide except in the case of terminal illness (Agnew, 1998). In some situations, however, the stigma of suicide acts to increase suicide risk because it may prevent people from disclosing to clinicians their suicidal thoughts or plans. Studies cited later in this chapter clearly indicate that patients often do not discuss their suicidal plans with their clinician. This, in turn, leads to their under-treatment and thus increases their likelihood of suicide. The existence of stigma surrounding mental illness is best supported by nationally representative studies of public attitudes. Studies find that about 45–60 percent of Americans want to distance themselves from people with depression and schizophrenia. The figures are even greater for substance use disorders (Link et al., 1999). Stigma leads the public to discriminate against people with mental illness in housing and employment (Corrigan and Penn, 1998). It also discourages the public from paying for treatment through health insurance premiums (Hanson, 1998). Public attitudes toward mental health treatment are somewhat contradictory: while nationally representative surveys find that Americans generally support mental health treatment for people with disorders, the public is less willing to use formal services if they anticipate a mental health problem for themselves (Pescosolido et al., 2000; Swindle et al., 2000). For people with mental illness, the consequences of societal stigma can be severe: diminished opportunities, lowered self-esteem, shame and concealment of symptoms, and lower help-seeking behavior (Hornblow et al., 1990; Link et al., 1997; Sussman et al., 1987; Wahl, 1999). The National Comorbidity Survey, one of the only nationally representative studies to investigate why individuals with mental illnesses do not seek treatment, found that almost 1 in 4 males and 1 in 5 females with Posttraumatic Stress Disorder cite stigma as their reason (Kessler, 2000). While the majority with mental illness do not seek treatment, there is wide demographic variability: women and younger adults (ages 18-44) are more likely to reach some kind of care, whereas ethnic minorities and older people are less likely (Bland et al., 1997; Gallo et al., 1995; Narrow et al., 2000; US DHHS, 1999; US DHHS, 2001). If they make contact with primary care providers, stigma inhibits them from bringing up their mental health concern. Patients may instead report more somatic symptoms of 2 Both stigmas can feed into the emotional burden in the wake of a suicide attempt by someone with mental illness. They may experience the stigma of mental illness, as well as the stigma of having tried to die by suicide.
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Reducing Suicide: A National Imperative mental illness, such as dizziness and stomach disturbances, because these are more culturally acceptable (US DHHS, 2001). Even if patients begin treatment for mental illness, stigma can deter them from staying in treatment. These problems are especially relevant for older people (Sirey et al., 2001), adolescents, and certain ethnic populations. These groups are discussed later in the chapter because they are at high risk for suicide. Stigma also extends to family members. Family members of people with mental illness have lowered self-esteem and more troubled relationships with the affected family member (Wahl and Harman, 1989). Families of suicidal people tend to conceal the suicidal behavior to avoid the shame or embarrassment, or to avoid the societal perception that they are to blame (especially with a child or adolescent suicide). After suicide, family members suffer grief as well as pain and isolation from the community (PHS, 2001). Financial Barriers The cost of care is among the most frequently cited barriers to mental health treatment. About 60–70 percent of respondents in large, community-based surveys say they are worried about cost (Sturm and Sherbourne, 2001; Sussman et al., 1987). Economic analyses of patterns of use of mental health services clearly indicate that use is sensitive to price: use falls as costs rise, while use increases with better insurance coverage (Manning et al., 1986; Taube et al., 1986). Rises in co-payments of mental health services are associated with lower access (Simon et al., 1996a). The demand for mental health services is more responsive to price than is demand for other types of health services (Taube et al., 1986). Having health insurance, through the private or public sector, is a major determinant of access to health services (Newhouse, 1993). People without health coverage experience greater barriers to care, delay seeking care, and have greater unmet needs (Ayanian et al., 2000). Overall, about 16 percent of Americans are uninsured, but rates are higher in racial and ethnic minorities (Brown et al., 2000). Having health insurance, however, does not guarantee receipt of mental health services because insurance typically carries greater restrictions for mental illness than for other health conditions (US DHHS, 1999). Over the past decade, during the growth of managed care, disparities in coverage have led to a 50 percent decrease in the mental health portion of total health care costs paid by employer-based insurance (Hay Group, 1998). Not surprisingly, insured people with mental disorders in a large United States household survey in 1994 were twice as likely as those without disorders to have reported delays in seeking care and to have reported being unable to obtain needed care (Druss and Rosenheck, 1998).
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Reducing Suicide: A National Imperative A more recent household survey in 1998 found that people with a probable mental disorder are more likely than those without a disorder to have lost their health insurance and to report lower access to care (Sturm and Wells, 2000). The consequences of the disparities in insurance coverage for mental illness have led to legislative proposals at the state and federal level for parity—coverage for mental illness equivalent to that for other health conditions (US DHHS, 1999). While there do not appear to be any studies directly examining cost as a barrier to treatment for suicidal people, most researchers believe that cost does play a role. Mental Health System Barriers The fragmented organization of mental health services has been repeatedly recognized as a serious barrier to obtaining treatment (US DHHS, 1999). The vision, beginning in 1975, of the community support reform movement—an integrated, seamless service system that brings mental health services directly to the community—has not fully materialized. Mental health services continue to be so fragmented that they have been termed the “de facto” service system (Regier et al., 1993). People with mental illness frequently report their frustrations and waiting times as they navigate through a maze of disorganized services (Sturm and Sherbourne, 2001; Sussman et al., 1987). The disorganization is a product of historical reform movements, separate funding streams, varying eligibility rules, and disparate administrative sources—all of which have created artificial boundaries between treatment settings and sectors (Ridgely et al., 1990). Among the hardest hit are people with co-occurring substance abuse and mental health problems, a group at higher risk of suicidality. Co-occurring disorders are the rule rather than the exception in mental health and substance abuse treatment (US DHHS, 1999). Linkages between different settings are critical for detection and treatment of mental disorders and suicidality (Mechanic, 1997). They include linkages between primary care and specialty mental health care; emergency department care and mental health care; substance abuse and mental health care; and, for adolescents, school-based programs with mental health or substance abuse care. The transition from inpatient care to community-based care is an especially critical period for suicidality in light of studies finding that a large proportion of completed suicides come after recent inpatient discharge, often before the first outpatient appointment (Appleby et al., 1999; Morgan and Stanton, 1997). In addition to improved linkages between different settings, many new programs strive to integrate mental health and primary care, through a variety of service configurations (e.g., a psychiatric nurse practicing with the primary care setting who treats some patients and is a referral source for others). Several
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Reducing Suicide: A National Imperative approaches to integrating care have been found successful in the treatment of depression (Katon et al., 1996; Katon et al., 1999; Smith et al., 2000). Its utility for suicidality is being studied through ongoing trials (Mulsant et al., 2001; Reynolds et al., 2001). Services research has focused for the past decades in developing better models of care that bridge these different sectors of care to deliver more integrated mental health care. Several successful models have been developed, most notably wraparound services including multisystemic treatment, for children and adolescents with serious emotional problems and assertive community treatment, a form of intensive case management for people with serious mental illness, combined services for people with mental and substance abuse disorders, and management programs for late life depression in primary care settings (US DHHS, 1999). One major problem, however, is lack of availability to these state-of-the-art services. Many communities simply do not provide them, and, when they do, there are often waiting times for treatment (US DHHS, 1999). Low availability of mental health services (of any kind) is a major problem in rural areas (Beeson et al., 1998; Fortney et al., 1999) and communities with large minority populations (US DHHS, 1999; US DHHS, 2001). People in rural areas report significantly more suicide attempts than their urban counterparts, partly as a result of lower access to mental health services (Rost et al., 1998). Another major problem is adapting model services to the unique needs of different communities or populations. Programs found successful for some populations may not translate into other settings. For example, a new primary care program for veterans designed to expand access to specialty mental health failed to do so (Rosenheck, 2000), despite the success of similarly designed gateway programs for other populations. Tailoring programs to the needs of distinct populations, including minority groups, is essential, given that they are less likely to access mental health treatment than are whites (US DHHS, 2001). Managed Care In the past two decades, managed care has grown from relative obscurity to cover almost 72 percent of Americans with health insurance in 1999 (OPEN MINDS, 1999). Driven by the goal of cost-containment, managed care refers to a variety of strategies for organizing, delivering, and/ or paying for health services. Its promise has been to improve access to health care by lowering its cost, reducing inappropriate utilization, relying on clinical practice guidelines to standardize care, promoting organizational linkages, and by emphasizing prevention and primary care. Managed care’s emphasis on treatment of mental health problems in primary
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Reducing Suicide: A National Imperative care is potentially advantageous for certain populations, such as older people and minorities, which are less inclined toward use of specialty mental health care (US DHHS, 1999). Managed care’s potential pitfalls are poorer quality of care, denial of needed care, under-treatment, and disruption in the continuity of clinician–patient relationships (IOM, 1997; Mechanic, 1997). The impact of managed care on mental health services has been profound in terms of costs: there is strong evidence that managed care has lowered the cost of mental health services (US DHHS, 1999). The study cited above by the Hay Group (1998) indicated that during the growth of managed care, there was a 50 percent reduction in the mental health portion of total health care costs paid by employer-based insurance. Whether these cost reductions have lowered access to, and quality of, mental health services for people who need them is a critical topic for research, but one for which answers have been elusive. Research has been stymied by the dramatic pace of change in the health care marketplace, the difficulty of obtaining proprietary claims data, and the lack of information systems tracking mental health quality or outcome measures (Fraser, 1997; US DHHS, 1999). Most concerns center on potentially poorer quality and outcomes of care from limited access to mental health specialists, reduced length of inpatient care, and reductions in intensity of outpatient mental health services (Mechanic, 1997; Mechanic, 1998). There are also concerns that more impaired populations and children will be adversely affected (US DHHS, 1999). The 1999 Surgeon General’s Report on Mental Health concluded that, while research is sparse, existing incentives in managed care did not encourage an emphasis on quality of mental health care (US DHHS, 1999). The impact of managed care expressly on detection or treatment of suicide has been largely unstudied. The limited body of relevant research has focused on depression treatment, spotlighting problems in quality of care and outcomes. The first major studies of prepaid managed care versus traditional fee-for-service care found generally no overall differences in outcome, but poorer outcomes for patients with the most severe mental illness (Lurie et al., 1992; Rogers et al., 1993). Later studies, focusing exclusively on primary care, found that less than 50 percent of depressed patients in staff-model health maintenance organizations received antidepressant medication that met practice guidelines (Katon et al., 1995; Simon et al., 1996b). One of few managed care studies to have addressed suicide, at least tangentially, was of 1204 outpatients with depression receiving care from seven managed care organizations of varying organizational structures (Wells et al., 1999). Using patient questionnaires, the study found that about 48–60 percent of patients with depressive disorder received some sort of mental health care. Only 35–42 percent of depressed
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Reducing Suicide: A National Imperative patients used medication at appropriate doses, leading the authors to conclude that overall quality of care was moderate to low. Two findings of the study are particularly relevant to suicide prevention: (1) patients with suicidal ideation did not receive higher rates of treatment than did patients without suicidal ideation (using measures of process and quality); (2) patients with both depression and alcohol abuse—which places them at higher risk of suicide—were not given more specialty referrals, as recommended by treatment guidelines (see later section on Substance Abuse). While the study did not assess outcomes of care, it did conclude that patients with suicidal ideation and other “silent,” yet serious, symptoms are at particular risk for not receiving appropriate treatment by managed care organizations. Another study, of serious suicide attempters in Florida, found that managed care’s criteria for approving admission to hospitals were not predictive of features seen in patients who made such attempts (Hall et al., 1999). A largely unstudied question is whether reductions in intensity of outpatient services, or in length of stay in inpatient care, contribute to suicide risk. A case-control study of completed suicides in the UK found that “reduction in care” at the final service contact was associated with almost a 4-fold increase in risk of suicide (Appleby et al., 1999). Reduction in care was defined by the study as one or more of the following: reduced appointment frequency, lowered doses of medication, less supervised location (e.g., transfer from day hospital or outpatient), or discharge from follow-up. While this study was not of managed care per se, it raises questions about cost containment strategies used by managed care to reduce intensity or frequency of services for people at risk of suicide. In related findings, initial results from a study of all hospital discharges in Pennsylvania found a 25 percent reduction in length of stay during a 3-year period for inpatient treatment of depression. Preliminary results suggest that the reduction in length of stay was accompanied by an increase in readmission rates, a finding that the study investigators interpreted as suggesting that caution should be used when implementing practice guidelines for length of stay (personal communication, J. Harman, University of Pittsburgh School of Medicine, December 18, 2001). Given the concerns about quality of care and lack of monitoring by managed care, the Surgeon General’s National Strategy for Suicide Prevention (PHS, 2001) explicitly recommends implementation of quality care/ utilization management guidelines by managed care organizations and health insurance plans for effective response to, and treatment of, individuals at risk for suicide. Quality improvement guidelines have been demonstrated to be successful at improving productivity and outcomes of depression in managed care, according to a randomized controlled trial (Wells et al., 2000).
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Reducing Suicide: A National Imperative CLINICIAN BARRIERS TO TREATMENT The overwhelming majority of suicide victims have a diagnosable mental disorder—most commonly a mood or substance use disorder (Chapter 3). Yet, as indicated earlier, most suicide victims do not have their disorder diagnosed or adequately treated at the time of suicide. This section explores the multiple barriers to treatment posed by clinicians in primary care, emergency care, and specialty care. Barriers in Primary Care Primary care has become a critical setting for detection of depression and alcohol use disorders (US Preventive Services Task Force, 1996) because of their high prevalence (Murphy, 2000). Primary care refers to family physicians, obstetrician-gynecologists, nurse practitioners, general internists, or pediatricians. Depression The detection and treatment of depression by primary care physicians is of great relevance to suicidology. Depression evaluation presents the first opportunity for primary care physicians to ask about suicidal ideation, which is one of several symptoms of major depressive disorder (APA, 1994), and a major risk factor for completed suicide (Harris and Barraclough, 1997). Treatment of depression in primary care is associated with reduced rates of completed suicide, according to an uncontrolled ecological study on the Swedish island of Gotland (see discussion in Chapters 7 and 8, Rutz et al., 1989; 1992). The effects of depression treatment in primary care on suicidal behavior are being studied in a controlled clinical trial in the United States. Preliminary results indicate reduced rates of hopelessness, suicidal ideation, and related symptoms of depression in older primary care patients (personal communication, C. Reynolds, G. Alexopoulos, and I. Katz, University of Pittsburgh School of Medicine, 2001). In primary care, routine screening for depression is not currently recommended for all asymptomatic adults; however, routine screening for depression is recommended if the physician suspects depression or if the patient carries depression risk factors (Beck et al., 1979; Preboth, 2000; U.S. Preventive Services Task Force, 1996).3 According the American 3 New recommendations from the U.S. Preventive Task Force (2002, Annals of Internal Medicine 136:760-764) now call for screening for depression in the primary care setting.
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Reducing Suicide: A National Imperative Medical Association council, considerable evidence indicates that a diagnostic interview for depression is comparable in sensitivity and specificity to many radiologic and laboratory tests commonly used in medicine (Preboth, 2000). During depression screening, guidelines explicitly recommend asking patients about suicidal intent and past suicide attempts. When a suicidal patient is identified, primary care physicians should refer them to specialty care and consider hospitalization (Beck et al., 1979; US Preventive Services Task Force, 1996). The role of primary care is likely to expand, however, as a result of recent health care trends and high level public health concern about suicide prevention. The Surgeon General’s National Strategy (PHS, 2001) sets as national objectives screening for depression in federally-supported primary care settings (e.g., Medicare and Medicaid) and the use of such screening as a performance measure for evaluating the quality of managed health care plans. The expanding role of primary care in detection and treatment of depression stems from at least four major factors. The first is awareness of how frequently depression is encountered in primary care. Depression is one of the most common of all mental and somatic diagnoses (Von Korff et al., 1987). About 6–10 percent of people attending primary care settings have major depression (Katon and Schulberg, 1992). The second is that many people with depression prefer to be treated in primary care or resist referral to specialty care (Cooper-Patrick et al., 1999; Orleans et al., 1985; Williams et al., 1999). Seventy-five percent of those seeking help for depression do so through their primary care physician rather than through a mental health professional (Goldman et al., 1999). One reason may be that they perceive primary care as less stigmatizing than specialty mental health care. The third factor is the advent of new classes of antidepressant medications that are less toxic when taken in overdose, thus making medication management less complex for non-specialists (Hirschfeld and Russell, 1997; US DHHS, 1999). The fourth factor is the trend in cost containment. Managed care generally encourages the receipt of mental health services in primary, rather than specialty, care because of lower costs (Mechanic, 1998). It is thus not surprising that about half of all people with depression and other mental disorders—either by preference or by financing—receive their mental health treatment in primary care (US DHHS, 1999). Primary care physicians handle nearly half of all anti-depressant-related office visits (Pincus et al., 1998). Only about 30–50 percent of adults with diagnosable depression are accurately diagnosed by primary care physicians (Higgins, 1994; Katon et al., 1992; Wells et al., 1994). Even more startling to suicide prevention are findings about the infrequency of suicide questioning during routine depression evaluation. Only 58 percent of a random sample of 3375 primary
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Reducing Suicide: A National Imperative care clinicians directly questioned patients about suicide (Williams et al., 1999), despite the fact that such questions are supposed to be asked during a depression evaluation (Beck et al., 1979; US Preventive Services Task Force, 1996). When broken down by specialty, the study found 65 percent of family physicians, 52 percent of general internists, and 48 percent of obstetrician-gynecologists assessed suicide by direct questions. Through regression analyses, the study found that family physicians and general internists were significantly more likely to make direct assessments for suicide than were obstetrician-gynecologists (Williams et al., 1999). Reasons for physician reticence in asking about suicide are discussed in a later section. Even when patients’ depression is accurately diagnosed, only a minority of patients receive adequate treatment for depression (US DHHS, 1999; Young et al., 2001). Since the vast majority of primary care physicians prefer to treat depression with medication (Williams et al., 1999), studies often measure inadequate treatment by inadequate dosage or duration of medication, infrequent follow-up, lack of medication adjustment, and/or inadequate conformance to treatment guidelines. Although detection and treatment in primary care are improving, major professional efforts have been undertaken to highlight and respond to the problem (Beck et al., 1979; Hirschfeld et al., 1997). What are the reasons for inadequate detection and treatment of depression by primary care physicians? The most frequently cited barriers relate to lack of knowledge and time. One recent survey of randomly selected primary care physicians found them to report widespread lack of knowledge about diagnostic criteria and treatment of depression. Overall, about one-third reported knowledge of formal diagnostic criteria and treatment, yet there was great variation between primary care specialties. Obstetrician–gynecologists reported the least knowledge, whereas family physicians reported the most knowledge (Williams et al., 1999). Inadequate time and competing demands created by other health problems— under the cost pressures of managed care—have been identified as barriers in several studies (Borowsky et al., 2000; Rost et al., 2000; Williams et al., 1999). The mean duration of a visit to a primary care physician is 16.3 minutes (Blumenthal et al., 1999), to which patients bring an average of six problems (cited in Williams et al., 1999). The time constraints on the primary care physician become immediately apparent, sparking concerns that primary care clinicians are ill-equipped for their enhanced role in detection of depression (Kane, 1996; Katon et al., 2001). Under-detection and under-treatment of depression are clearly associated with patient distress and disability (Hirschfeld et al., 1997).
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Reducing Suicide: A National Imperative “Hope” is the thing with feathers— That perches in the soul— And sings the tune without the words— And never stops—at all— And sweetest—in the Gale—is heard— And sore must be the storm— That could abash the little Bird That kept so many warm— I’ve heard it in the chillest land— And on the strangest Sea— Yet, never, in Extremity, It asked a crumb—of Me —EMILY DICKINSON Reprinted by permission of the publishers and the Trustees of Amherst College from The Poems of Emily Dickinson, Thomas H. Johnson, editor, Cambridge, Massachusetts: The Belknap Press of Harvard University Press, Copyright © 1951, 1955, 1979 by the President and Fellows of Harvard College.
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