Why 75 Percent of Anxiety Sufferers Fail to Get Proper Care
New research looks at obstacles to treatment of social and generalized anxiety.
Posted Aug 13, 2018
Nothing in the affairs of men is worthy of great anxiety. —Plato
According to the National Institutes of Mental Health, anxiety disorders as a group are the most common mental disorders among Americans, affecting 18 percent of people in any given year. Over 20 percent of those affected by anxiety disorders are considered to have high severity problems, representing more than 4 percent of the U.S. population. This means, that on average, out of every 100 people you pass on the street, 4 of them likely have a “severe” anxiety disorder.
There are multiple risk factors for anxiety disorders, including having been shy as a child, being female, financial limitations, being divorced or widowed, a history of stressful life events, having close biological relatives with anxiety disorders, and parents with mental illnesses. And, according to a widely publicized 2017 study in Psychological Services (Weissman et al., 2017), mental illnesses, including anxiety disorders, are on the rise while care is lacking for many—even though effective treatment is theoretically available. Understanding what keeps people from getting treatment is essential to figure out how to more effectively fight mental illness.
Over the course of a lifetime, it is estimated that 12 percent of people will develop Social Anxiety Disorder (SAD), and 6 percent of people will develop Generalized Anxiety Disorder (GAD). People with Social Anxiety Disorder have persistent concerns that others view them negatively, to the point of causing serious difficulty participating in social activities and performance situations, such as work presentations. Generalized Anxiety Disorder is a chronic condition characterized by ongoing worry, indecision, nervousness, muscle tension and other physical signs, leading to problems in daily function as a result of wasted time and inability to move forward toward goals.
As such, these conditions wreak havoc on quality of life, causing significant distress and dysfunction, with increased risk for addiction, suicide, health issues, poor social function, and suicidality. To make matters worse, according to study authors, the National Comorbidity Survey Replication revealed that an enormous fraction of those with SAD or GAD, 75 percent of the nearly 10,000 people surveyed had not received treatment in the year leading up to the study (Wang et al., 2005).
Looking more deeply
New research from a team of scientists at the Massachusetts General Hospital and Temple University (Goetter et al, 2018) identifies the reasons that people suffering with Generalized Anxiety Disorder and Social Anxiety Disorder don’t receive adequate care. While prior research suggests that the most common reported reason people with SAD or GAD haven’t gotten care is out of fear of what others will say or think, showing how powerful stigma really is, other common reasons include lack of financial resources and not knowing where to go for care.
To dig deeper into understanding why those with SAD and GAD don’t get care, researchers recruited 226 participants with only SAD and/or GAD (and not additional conditions such as depression or substance use) between the ages of 18 and 65 to participate in a detailed clinical assessment and survey about barriers to care. Of those 226 participants, 121 were previously diagnosed with SAD and 105 with GAD. A self-selected group of 171 (those who were interested in entering a more detailed phase of the study) as well as 55 more with additional diagnoses went on to complete a variety of assessments.
Researchers administered the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders (the SCID), indicating whether they had SAD, GAD (or both); the Leibowitz Social Anxiety Scale (LSAS), looking at social and performance anxiety; the Hamilton Anxiety Rating Scale (HAM-A); the Montgomery-Asberg Depression Scale (MADRS); and the Range of Impaired Functioning Tool.
They also rated participants using the Clinical Global Impression Scale-Severity (CGI-S), a common estimate of overall burden of illness. Finally, participants completed self-report measures including demographics and, critically, the Barriers to Treatment Questionnaire (BTQ) , which gauges how much each of the following reportedly gets in the way of care for participants with GAD and SAD: how they perceived clinical interventions, how well they thought treatment might work, and related factors; problems with money, or insurance, and logistical issues including time or physical access to care; and experiences of stigma and shame around illness and treatment.
Why don’t people with social and generalized anxiety get treatment?
First of all, researchers found that participants with GAD and SAD had moderate illness severity, on average across both groups. Similarly, scores on the BTQ were in the same range, regardless of diagnosis. Greater barriers to care were associated with being younger in age, being from an ethnic minority group, and being impoverished. Barriers to care did not track with gender or educational level. Notably, the more severe the anxiety, the higher the BTQ. This means that those with a greater symptom burden had more difficulty getting treatment. This is exactly the opposite of what we'd want to see.
What were the greatest barriers to care? At the top were logistical issues and stigma or shame, reported by a majority of participants for different specific reasons (see graph below for a detailed breakdown). Those with GAD most commonly referenced wanting to deal with issues on their own, feeling embarrassed, not knowing where to get treatment, and anxiety about how to pay for care. Those with SAD most commonly referenced wanting to handle problems on one’s own, embarrassment, and not knowing where to get care.
Shockingly, or perhaps not so shocking, over half of the participants said they didn’t know where to go to get treatment. On one hand, this is pretty incredible, as this study was conducted in a big city with good public education and a plethora of world-renowned hospitals. On the other hand, people are too good at ignoring things which are right in front of us, especially when they trigger unpleasant feelings of shame and stigma, leading to avoidance and social withdrawal.
Even with the constant flow of media attention and a growing number of high-profile individuals coming out of hiding about mental health and substance-related struggles, people with SAD and GAD aren’t getting the help they need. And the more severe the symptoms, the greater the perceived barriers to care, a troubling finding. In addition to improving public health efforts, the study authors suggest that making treatment more available and easier to access could help, including more use of approaches like “bibliotherapy” (e.g. the use of directed self-help materials), computer-based treatments including online and virtual therapies, telemedicine, and stepped-care models which start with recognition and care by general providers, and move through stages of more intensive care for those who do not respond to more basic treatment.
Reducing societal stigma and raising awareness, along with corporate wellness-based initiatives, might also allow people to build time for treatment into their work schedules, without fear of reprisal. For ethnic minorities, not only may actual barriers to care be higher than for whites, but efforts to reduce shame and stigma may be less effective for these groups. Regardless, the study authors wisely recommend that clinicians not only properly screen for and diagnose mental illnesses such as SAD and GAD, but that they also discuss the various barriers with patients. Using the BTQ as a tool to both inform the dialogue with patients, as well as to identify individual obstacles to overcome, could help people access available treatments.
Standard public health approaches don’t seem to be doing the trick. Suicide is on the rise, anxiety is on the rise, depression is under-treated, and geopolitical uncertainty just adds fuel to the fire. As with other fields, novel approaches based on technology and a better understanding of human psychology are required to enable people to recognize they need help, and work out how to get it. People close to those with problems such as anxiety disorders can find ways to enable loved ones to get care without adding to the burden of stigma and shame, possibly averting tragedy. Parity legislation, which dictates that insurers pay for behavioral health the same as physical health, must be better implemented.
As it is, between lack of insurance or other means to pay for treatment, poorer coverage for behavioral health, outsourcing of mental health to second-party providers, and frequent denial of arguably valid claims, getting treatment for mental health issues remains far more difficult than it ought to be. And we all pay the price. There’s enough difficulty because of how people feel about having anxiety disorders (and other mental health challenges) without placing additional obstacles in the way. If you believe you or someone you love may have an issue, remember that there are effective and accessible avenues for relief available, and no one should feel ashamed of or deterred from seeking appropriate help.
Goetter, E. M., Frumkin, M. R., Palitz, S. A., Swee, M. B., Baker, A. W., Bui, E., & Simon, N. M. (2018, August 2). Barriers to Mental Health Treatment Among Individuals With Social Anxiety Disorder and Generalized Anxiety Disorder. Psychological Services. Advance online publication. http://dx.doi.org/10.1037/ser0000254
Wang, P. S., Lane, M., Olfson, M., Pincus, H. A., Wells, K. B., & Kessler, R. C. (2005). Twelve-month use of mental health services in the United States: Results from the National Comorbidity Survey Replication. Journal of the American Medical Association Psychiatry, 62, 629–640. http://dx.doi.org/10.1001/archpsyc.62.6.629
Weissman J, Russell D, Jay M, Beasley JM, Malaspina D & Pegus C. Disparities in Health Care Utilization and Functional Limitations Among Adults With Serious Psychological Distress, 2006–2014. Psychiatric Services 68:7, July 2017. https://ps.psychiatryonline.org/doi/pdf/10.1176/appi.ps.201600260