As mental health professionals, policy makers and advocates focus on taking steps to mend the fragmented mental health care system, the role of patients and their friends and families is sometimes overlooked.

That’s why the American Psychiatric Association is releasing a first-of-its-kind book to decode in plain English the Diagnostic and Statistical Manual of Mental Disorders – a guide for mental health providers that is also used to determine insurance coverage. The resource, Understanding Mental Disorders: Your Guide To DSM-5, includes in-depth explanations of risk factors, symptoms and symptom management, treatment options and success stories.

This gets at one of APA’s reasons for releasing this volume — to help create a more accurate picture of what a particular illness or disorder might involve.

Jeff Bornstein, a psychiatrist and spokesman for APA, said empowering patients with a better understanding of what they are facing will enable them to better advocate for themselves.

APA understanding mental
A new resource, Understanding Mental Disorders: Your Guide To DSM-5, from the American Psychiatric Association attempts to help patient better understand their symptoms and diagnoses.

“Sometimes when there is a disagreement with a managed care company, the clinician speaks on behalf of the patient,” Bornstein said. ”But it’s[also] helpful to have family [members] or the patient talk and say ‘I’m telling you, I have this symptom, it’s part of diagnosis X, Y and Z. Why are you not letting me have the treatment I need?’”

Former Rhode Island Congressman Patrick Kennedy, a mental health advocate, said the book is designed to help families and patients overcome stigma and get more involved in treatment. He said it would have helped him in his own experience with bipolar disorder and alcoholism. “I was the last one to know I had a problem, and that’s often the case for those of us in crisis. … The people around me would have benefited from this,” he said at an event marking the book’s launch.

When people think they may have an issue, or are faced with a diagnosis, they often go to the Internet where misinformation and “horror stories” are widespread, said Paul Gionfriddo, president of mental health advocacy group Mental Health America. “This [book] lays out in clear terms [what a mental disorder diagnosis means] so we don’t have to live in fear of the unknown.”

Take the experience of Melanie Carlson, 33, who suffered a psychotic episode in 2007 when she was 25. She ended up in a hospital, frightened and confused.

“It was a very traumatic incident. I was afraid of my own thoughts and what I was capable of,” said Carlson, who lives outside Ann Arbor, Mich., and manages her bipolar disorder with medication, exercise, therapy and abstaining from alcohol. But for almost a year-and-a-half she was in denial and refused treatment, mainly because she says her only knowledge of her condition came from media reports about high-profile, often violent events involving mental illness.

She says having more straight-forward information could have helped her understand that she could take care of her disorder and still live a normal life – with a job, friends and family.

“It felt like a hopeless situation,” Carlson said, who is now a social worker helping chronically homeless people get housing. “If I’d had a resource that explained my symptoms … and explained how complying with treatment could produce long-term stability I would not have been … resistant.”

It’s all part of the steady process of removing the taboo from treatment, said Jorge Petit, a psychiatrist and founder of Quality Healthcare Solutions Group, a health care and behavioral health consulting firm in New York City. “It’s no different than diabetes and hypertension — it requires awareness and understanding of how to maintain wellness and not to relapse,” he said.

However, he added that the playing field is still not even. “It’s hard for people to call the insurance company and say, ‘Why are you sending me a prior authorization notice? It’s the same as having a medical issue.’”

NEW YORK – It is a busy Friday afternoon. Staff members check in guests at the front desk. Other employees lead visitors on tours of the upstairs bedrooms, or field calls from people considering future stays. Aromas of garlic and roasted chicken seep out of the kitchen.

Community Access is not a bed and breakfast, although it feels that way when you walk through its unmarked door off Second Avenue on Manhattan’s Lower East Side. Also known as Parachute NYC, this quiet seven-bedroom facility is one of four publicly funded mental health centers in New York City (located in Manhattan, Brooklyn, Queens and the Bronx) that provide an alternative to hospital stays for people on the verge of a mental health crisis.

Parachute’s respite centers have no medical staff, no medications, no locks or curfews and no mandatory activities. They are secure, welcoming places where people willingly go to escape pressure in their lives and talk to trained “peer professionals” who can relate to what guests are going through because they are recovering from mental illness themselves.

Without places like this, New Yorkers who suffer from serious mental illness would have little choice but to check into a hospital or a hospital-like crisis center when their lives spin out of control. Some people need to be hospitalized for severe psychosis and depression, but many others end up in the hospital because they have no other options.

Relatively rare in the U.S., respite centers like this one cost a fraction of the price of a hospital stay, and can be far more effective at helping people avoid a psychotic break, severe mood swing or suicidal episode.

Community-based mental health services are particularly vital at a time when the number of beds in state psychiatric hospitals has declined sharply. Nationwide, psychiatric hospitals shed 3,222 beds from 2009 to 2012 amid recession-related budget cuts, and the number has continued to decline even as the economy has improved. According to the U.S. Substance Abuse and Mental Health Services Administration, 55 percent of U.S. counties have no practicing behavioral health workers and 77 percent have reported an unmet need.

Launched in 2013 by the city’s public health department, Parachute NYC includes mobile treatment units and phone counseling in addition to the four brick-and-mortar respite centers. A collaboration of city and state mental health agencies, the project received a three-year $17.6 million innovation grant from the U.S. Department of Health and Human Services. Its financial goal is to save $50 million in hospital expenses.

In addition, New York state’s Medicaid agency plans to use a federal waiver to pay for respite services and other community mental health services for 140,000 state residents under a managed care program for people with behavioral health needs. Separately, New York state’s mental health office has invested $60 million since last year on the creation and expansion of community-based services throughout the state, including child and adult respite programs.

“A hospital is the last place you want to be if your life is unraveling,” said Community Access CEO Steve Coe. “They put you in a room, check your blood pressure and walk away and leave you for hours. You need to put your life back together, not be held in a place where you can’t do anything or talk to anyone,” he said.

Nevertheless, there is broad agreement that nonmedical services such as Community Access are not for everyone.

“The caution is that while this approach is good for some people, others really need medication and structure, so it has to be a good match for the person who is coming into it,” said Sita Diehl, director of state policy at the National Alliance on Mental Illness. “The advantage is that you get an expert listener working with you, really delving into who you are, rather than someone slapping a diagnosis on you and handing you a prescription.”

Averting Crisis

Parachute NYC provides a non-threatening environment where people who are coming undone can take a break from their turbulent lives and think through their problems before they reach a crisis point. Many who shun hospitals and crisis stabilization units will voluntarily seek help at respite centers.

In fact, Community Access insists that all prospective guests check in on their own, without coercion from a doctor, friend or family member. They also screen applicants to ensure that respite is their best option.  Some may need medication and more intensive treatment from medical professionals.

“We’re not against medication,” assistant director Keith Aguiar explained. “If they come in with their own medications and they want to take them, that’s fine. But we do not tell them they have to.”

Many guests have full-time jobs and continue working and seeing friends during their stay. They can come and go any time of day or night. Unlike a hospital, Coe stressed, respite centers allow people to maintain their lives and relationships instead of putting everything on hold. Guests can also continue seeing their regular mental health providers during their stay.

The maximum length of stay at Parachute NYC respite centers is 10 days, soon to be shortened to one week under new Medicaid rules.  But guests can return up to three times per year as needed. They also can visit weekly and monthly as “alumni” and take part in group activities and talk to staff.

To qualify for any of Parachute’s respite centers, guests must be New York City residents who are 18 or older.  They must also have a clinical evaluation (within the last 48 hours) and a referral from a mental health provider stating they are not an imminent risk to themselves or others and would benefit from respite care.  Guests also must have stable housing to go back to.

The Guest List

“We have a wide diversity of guests, from a Columbia University professor and an art critic to people who have been chronically homeless much of their lives,” Aguiar said. “We see men and women of all ages and all walks of life.”

In the last month, the guest list at Community Access included a 28-year-old woman who was living in mental health support housing and believed her roommates were practicing witchcraft on her. She was referred by her housing counselor. Another 24-year-old woman with a diagnosis of schizoaffective disorder needed to escape mounting conflicts at home with her brother, who had a diagnosis of schizophrenia. She was referred by a community psychiatric team.

A 70-year-old jazz musician who suffered from drug and alcohol addiction came to get away from his chaotic living situation.  He talked to peers about his struggle with addiction, played his trumpet and napped a lot during his stay. “It was the best sleep I’ve had in years,” he told the center’s director Lauren D’Isselt, who is a psychologist.

Another woman, 25, applied to become a guest without a referral (the center arranged for Parachute’s mobile unit of clinical professionals to provide an assessment.) She’d heard about Community Access from a friend. A native New Yorker who left college because of severe depression, Maggie (not her real name) spoke calmly about her history of mental illness while sitting on a bench on the center’s sunny back courtyard.

“I wanted to finish college,” she said, “but I kept ending up on the tops of buildings.” Diagnosed with depression when she was seven, Maggie has been in psychiatric care most of her life.  She spent the better part of the last six months in hospitals.

Now that she’s back in New York temporarily living with her parents, she said she wants to find the right kind of treatment and get on her feet so she can return to school.  “Living at home is not very comfortable because my parents are the source of my problem. They abused me when I was a child,” Maggie said.  She said she could stay with friends, but they don’t understand what she’s going through.

Five days into her stay, Maggie said it’s been good for her. She’s been able to make plans for future treatment. “It makes a lot of sense,” she said.  “At a typical hospital, they take depressed people and lock them up and away from everyone and expect them to get better. Here you can go out and have coffee with a friend and no one has to go through double-locked doors to see you.”

“When I feel really anxious or sad, I can talk to a peer. Places like this are rare,” Maggie said. “But they shouldn’t be.”

A National Need

One in four adults, about 62 million Americans, experiences some form of mental illness during the course of a year. Of those, about 14 million live with a serious mental illness such as schizophrenia, major depression or bipolar disorder, according to data from the National Alliance on Mental Illness. More than half of them do not seek treatment, in many cases because they don’t know where to find help.

For those who do seek treatment, the direct medical costs total more than $100 billion per year, according to estimates from the National Institute of Mental Health. Community mental health services such as respite centers may make it possible to reduce those costs and relieve the demand for psychiatric hospital beds, which are in short supply in most communities.

Parachute NYC has so far served about 700 people at its respite centers, 600 through its mobile treatment teams and more than 20,000 through its peer-operated telephone support service. The city’s health department intends to analyze the program to determine whether it has resulted in a reduction in the city’s 100,000 annual psychiatric emergency room visits.

“We don’t perform miracles here,” D’Isselt said. “But we do help people find joy in their lives.” Most guests forge new friendships and leave with a new life plan, she said. “A lot can happen in a week.”

In scientific literature, studies with “good” results are more likely to be published than studies with results that are unclear or negative. A study with a new, exciting finding (a positive result) is likely to see the light of day, even if the finding is not in line with the authors hypothesis. But a study that doesn’t have a new finding (a negative result), or has an unclear finding is far less likely to be published.

The fact that positive results are more likely to be published is called publication bias and unfortunately it’s quite common. Since science is about acquiring knowledge, when scientific literature is distorted as a result of publication bias this “knowledge” becomes less trustworthy.

In medicine this can have serious consequences. Patients may be prescribed therapies that are based on biased results, and physicians and policymakers might not know that the information they are basing these decisions on has flaws.

For example, we know that the scientific literature has overestimated the efficacy of antidepressants to treat depression. These drugs are also used to treat anxiety disorders. We wanted to find out if the the efficacy of antidepressants for these conditions had also been overestimated because of publication bias.

What causes publication bias?

Before we look at our study on antidepressants and anxiety, let’s take a look at why positive results are more likely to be published than results that are negative or unclear.

Researchers may suffer from “cognitive bias,” which means they are more likely to interpret findings to be consistent with their own hypotheses. In short, people may find what they expect (or want) to find.

Or what if you find something, but it just doesn’t seem that significant? Cognitive bias may lead researchers to look at other, sometimes less significant, outcomes from their research when they don’t find what they were expecting to. Or they may analyze their data with a new statistical technique or combine different outcomes into a new endpoint that lets them arrive at a result that is consistent with their hypothesis.

Researchers may decide not to publish negative results. This happens for a lot of reasons, but money tends to be a big one. Finding “nothing” is simply less likely to lead to funding for follow-up research, than finding “something.” That isn’t the only financial reason for why negative results might not be published. Prescription and non-prescription therapies are big money around the world and negative results do not help to sell drugs.

And sometimes it’s out of the researchers’ hands. Trials with negative results are less likely to be accepted for publication at major journals. A journal sends submitted manuscripts out for peer review. Experts in the field review the work and provide feedback as to whether it should be accepted for publication or not.

Peer review allows outside reviewers to express their own opinions and ideas regarding the research. Ultimately, the decision to accept or reject the manuscript may depend on these revisions.

In this setting, positive results tend to be reviewed more favorably since they often correspond better to the peer reviewer’s opinions. Positive findings also attract more widespread attention than negative results, which can increase the visibility and reputation of the journal.

Publication bias and antidepressants for anxiety

Other studies have found cases of publication bias in trials investigating how effective antidepressants are in the treatment of depressive disorder, and on the use of antipsychotics, as well.

We wanted to find out whether publication bias was also present in trials on the efficacy of second-generation antidepressants to treat anxiety disorders. These drugs, selective serotonin reuptake inhibitors (SSRIs) and serotonin and norepinephrine reuptake inhibitors (SNRIs), are the primary pharmacological treatment choice for anxiety. You might have seen commercials for these drugs – Cymbalta and Effexor, for example are SNRIs and Zoloft and Prozac are SSRIs.

We looked at trials examining SSRIs and SNRIs in the treatment of generalized anxiety disorder, panic disorder, social anxiety disorder, post-traumatic stress disorder and obsessive-compulsive disorder.

We compared the trials submitted to the Food and Drug Administration (FDA) by pharmaceutical companies to the resulting publications in scientific journals. We wanted to see how many of the trials were published in articles and if those published articles portrayed the results of the trials accurately.

Of the 57 trials that were registered with the FDA, 41 had positive results and 16 did not. In our study, published in JAMA Psychiatry, we found that of the 45 journal articles that reported on these trials, 43 were positive. That means that 96% of journal articles were positive as opposed to 72% of the FDA reviews.

In further examination, we found that trials with “not-positive results” (results that were negative or unclear) were less likely to be published than trials with positive results. Of the 41 positive trials registered with the FDA, 40 were published in journal articles. But of the 16 trials with not-positive results, just nine were published.

Turning negative results into positive results

Of the nine published trials with not-positive results, three were published with positive results in the accompanying journal article. This is called outcome reporting bias. These studies usually reported the results for a secondary, less important outcome or used creative statistical approaches to make the primary outcome seem positive, when the true result was negative or unclear.

And for another three of the not-positive trial results were reported accurately but the authors concluded that the results were really positive – this is called spin. Just three of the nine not-positive trials were published without any bias.

Overestimation of treatment effects

When we compared the results between the FDA-reviewed trials and the published literature, the literature overestimated the effects of the drugs by 15%, which isn’t statistically significant.

In this case, we found that publication bias contributed more to an overabundance of positive results than to the estimates of how well these drugs actually worked.

This overabundance of positive trials creates a skewed representation of the efficacy of these drugs for anxiety disorders. And this in turn may create unrealistic expectations about how well these drugs work among prescribers and patients.

Openness about research results

Publication bias is not limited to psychiatry – it’s a problem across medicine. Because so much medical research is publicly funded, researchers and the public should have easy access to reliable results from the studies which current medical therapies are based on. Unfortunately, the current system relies heavily on voluntary reporting, which facilitates publication bias.

Now that the scientific community is paying more attention to publication bias and the problems it creates, various initiatives have begun including trial registrations, journals that explicitly welcome studies with negative results, and open access initiatives in which data becomes publicly available regardless of the outcome of the study.

These initiatives, combined with increasing awareness among researchers, study participants and government agencies will hopefully aid in increasing the accuracy and completeness of reporting of clinical study results.

Annelieke Roest is Postdoctoral Researcher, Psychiatry at University of Groningen.
Craig Williams is Professor of Pharmacy at Oregon State University.

This article was originally published on The Conversation.
Read the original article.