Dealing with Psychological Trauma in Children: Answers from Neuroscience, Community Initiatives, and Clinical Trials for Treating Childhood PTSD

By Shaili Jain, MD
Posted: April 1, 2013
Photo by colemama via Flickr

Photo by colemama via Flickr


“Susie Ehrens spoke of her daughter who escaped from Sandy Hook with a group of other first graders when the shooter paused.  Her daughter, she said, saw her friends and teacher slaughtered before she ran past lifeless bodies and a half a mile down the road” 

 

On December 14th, 2012 the unthinkable happened. A gunman fatally shot twenty children and six adult staff members in a mass murder at Sandy Hook Elementary School in the village of Sandy Hook in Newtown, Connecticut.  This incident is the second deadliest school shooting in American History.

Tragically millions of children, all around the world, are frequently exposed to all manner of traumatic experiences.  From those of human design such as bearing witness to shootings, inner city violence or the effects of living in a war zone or being the victims of child abuse to enduring the consequences of exposure to natural disasters such as a hurricanes, earthquakes or natural fires.So what is the impact of psychological trauma on children?

To understand more, I recently met with Dr. Victor Carrion, a Professor at the Stanford University School of Medicine and Director of the Stanford Early Life Stress Research Program at the Lucille Packard Children’s Hospital at Stanford.  Dr Carrion’s research focuses on the interplay between brain development and stress vulnerability.  He has developed treatments that focus on individual and community based interventions for stress related conditions in children and adolescents that experience traumatic stress.

SJ: If we consider the example of a child, of elementary school age, who is exposed to a horrific traumatic event such as Newtown what, as a child psychiatrist, would you expect to see over the coming days and weeks i.e. what would be a normal and expected reaction to such an event in an elementary school child?

VC: The school-aged kid is going to have a difficult time understanding his/her emotional life. So, they may somatise e.g. complain of headaches and stomach aches and they are going to want to not go to school. They may not be psychologically minded enough to verbalize what they are struggling with. Kids sometimes do not have the vocabulary to talk about a traumatic event and sometimes they are still very concrete in their thinking.

 Also remember, because of media, even if we are not right where a trauma happened we can still be equally affected.  An example would be 9/11, where kids in California were following, minute by minute, everything that was happening in the news and when they started showing those pictures of people jumping from the towers that was traumatic for many kids. Our association, the AACAP (American Academy of Child & Adolescent Psychiatry), actually contacted the networks and they were very responsive and stopped showing those images as soon as we contacted them.

SJ: In your opinion, how best should parents, teachers and caregivers respond to such normal reactions?

VC: It will be important to really encourage discussion after something traumatic happened but not force it. Certainly, not even encourage it in very young kids that may not even know that something happened. Our belief now is that if the kid is 4 and 5 and this is not being discussed at school and they are not watching the news and they do not know that something terrible happened, there is no reason to talk to them about it.

 Obviously, if they directly witnessed or experienced something, that is a different story because, as you know, exposure to trauma is one of the strongest predictors of PTSD.

It is important is for caregivers to give children a message of safety and get the message that they are being taking care of and that they will be protected and that nothing will happen to their caregivers. This message of safety is important.

Another piece of this is that children should not be expected to be tough. One of the things that parents can actually model is that it is okay to cry, it is okay to have distress but parents have to be careful in how they balance that with maintaining their safety message and their authority message. They still have to give the message that I am okay enough to take care of you in a good way. But children certainly should be encouraged to express whatever feelings they may have about something that has occurred

Most children, exposed to trauma, are going to have a normal response and be okay with time. With a very small group of these kids, the response is going to continue and is going to become maladaptive and they need extra help. One of the things that is important for caregivers to recognize is when a child’s response becomes maladaptive, chronic or continuous. In that event, they should seek out professional help.

SJ: Let’s consider the more unfortunate scenario, that this child starts to develop signs/symptoms of a prolonged reaction to the trauma/an abnormal reaction: What are the typical manifestations of PTSD (posttraumatic stress disorder) in children of this age?

VC: Kids tend to show their re-experience of trauma through intrusive thoughts. This means thinking or talking about the trauma when they do not want to. So, they are playing basketball with friends and, all of a sudden, the images of the trauma do not let them enjoy the game or even play it. Or, they are doing their homework but they cannot because they are thinking about the traumatic event. Or they re-experience their trauma through what we call traumatic play. Traumatic play is a way for many children to communicate their experience especially if they are not that verbal.

Then there is avoidance. But with kids is it really avoiding or is it that the kid does not have the words to talk about what happened? There might be a cognitive inability to really talk about what happened but certainly we also see an avoidance of trauma related triggers. For example, if something traumatic happened and it was a rainy day then the next rainy day they may be particularly sensitive or nervous that day.  

We see emotional numbing quite often also: kids say that they can no longer feel sad when something bad happens. They feel happy when something good happens but not as good as they used to feel. They may go to a birthday and it is okay but they used to love birthdays before.

The other type of symptom is the physiological hyperarousability. That is what leads many kids to receive a misdiagnosis (especially kids that live in environments where they are surrounded by violence) of ADHD. Now, this gets very complicated, clinically, because kids that truly have ADHD are at increased risk of experiencing traumatic events. For example, they may not see the car coming and they go and cross the street. The kid that has ADHD is at increased risk of experiencing traumatic events which means they may end up with PTSD also.

Then, another thing as I said is that traumas are stressors to the system and you develop whatever you are vulnerable to. It may be that you do not develop PTSD but you develop OCD/a phobia as a consequence of experiencing a traumatic event.

We have always known that having anxiety puts you at risk for developing PTSD but what we have also seen in our data is that developing PTSD is a good predictor of developing other anxiety disorders after having PTSD.

What we also see is that children tend to be egocentric and naturally narcissistic. In kids it is a helpful drive because they get the necessary attention and all that but that also means that if something bad happens, children take excessive responsibility for it and it creates this sense of guilt and guilt is a very good predictor of developing PTSD. This is not survivor’s guilt. This is guilt over an act. For example, “there was a fire and I could have prevented it and I did not”.” I was abused and that is because I provoked it or I made it happen”. Whenever there is that sense of guilt after a kid experiences a traumatic experience it is good to start some clinical remediation to correct those cognitive distortions.

SJ: How does this differ from PTSD in adults?

VC: Immediately, when we look at the first criterion for diagnosing PTSD, we already have an issue when it comes to kids. Criterion A requires that the traumatic event make you feel as though your life is in danger/threatened. But if you are younger than 7 or 8, you may not understand death as something that is universal and something that is irreversible.

One of the studies that we did is that we looked at children who had experienced separation or loss and were in that age group and compared them with kids that had experienced physical abuse, sexual abuse, and also had functional impairment. They really did not differ in terms of the amount of functional impairment that they had in their lives, in their personal relationships, and the amount of distress and so forth. So for children younger than 8, what I am saying is that separation or loss is considered a traumatic event. even if they might not have a full understanding of death or loss.

The symptoms of PTSD, in children as well as in adults, are mostly on and off. They are not there all the time and they tend to be triggered by cues. When those cues or triggers are there, that is when you see the symptoms. This becomes problematic if you are conducting a trial and at the end of the trial this group looks like it is doing well, it may be the case that the treatment worked but it might also be the case that there were no triggers/cues around those kids at that time. That is one of the reasons why we need to know about the neurofunctionality or the neuroscience of how traumatic stress impacts development.

For kids it is still a balance between internal and external resources, and it is like a mathematical equation.  So you may have a lot of coping and strength and that may be able to help you overcome the lack of support you have in your life or you may have total perfect support but you have so many risk factors to begin with like a previous history of trauma exposure or family history of anxiety disorder that you are more likely to have a post traumatic reaction. I am calling it a post traumatic reaction not necessarily PTSD because some of the work that we have done and also work done by Dr. Michael Scheeringa at Tulane University shows that children do not have to have all the criteria for PTSD listed in the DSM to experience functional impairment. For example, we showed that kids that have PTSD compared to kids that have a history of trauma and symptoms in 2 of the clusters are equally impaired. We still have work to do in terms of how we develop this diagnostic criterion for children. That is one of the things that Michael has done. He has proposed a number of criteria that has less symptoms and also that some symptoms might be somewhat different in children compared to adults

SJ: In terms of the neuroscience of PTSD, how might this look in terms of impact on child development from a psychophysiological, neuroimaging or neuroendocrinological point of view?

VC: One of the things that have been studied for a long time is the autonomic nervous system in children as well as in adults. It seems that those who have PTSD are actually a heterogeneous group and that physiology may help us differentiate between kids that dissociate versus all the kids that might display symptoms of aggression. For example, the kids that dissociate seem to have a lower heart rate when narrating a stressful event or a stressful story. Whereas, those that do not dissociate seem to have increased heart rate but increased heart rate does not seem to be a good marker because it depends where your baseline is. What seems to be a good marker is how long is the latency? i.e. how long it takes you to return to your baseline heart rate after a stressor. So, if the stressor increases your heart rate, kids that are vulnerable or have PTSD will take longer in coming back to a baseline heart rate.

 We concentrated on looking at cortisol and identifying what would be a good cortisol marker for this kids. What we find is that these kids have the normal circadian rhythmicity that you would expect (i.e. higher at the beginning of the day and going down at the end of the day) but then at the end of the day it seems to be elevated so these kids have high levels of cortisol. That is what we found about 10 years ago but what we found out years later is that that variable of” time since trauma” is very important. 

What we did is we looked at a big sample of kids and we looked at those that had had trauma during the past year and those that had trauma prior to that year. We hypothesized that our theory of increased cortisol was going to hold true for the kids that had it in the past year but not for the others. What we actually found was exactly that and we found 2 reverse correlations where if you had events in the past year, the higher your cortisol, the higher your symptoms of PTSD. Whereas, for the other individuals that had experienced trauma from a long time ago and were still with symptoms of PTSD, the more symptoms, the lower the level of cortisol.

But in general, I would say, that high pre-bedtime (before you go to bed) cortisol in kids, I am starting to think of that as a marker of pediatric PTSD.

Now, if you have these high levels of cortisol, the next normal question was to see what is going on in the brain because of the potential neurotoxicity of cortisol at high levels every day, right? So, we looked at kids who were experiencing chronic trauma i.e. physical abuse, sexual abuse and witnessing a lot of violence.

Cross sectionally there were no significant findings. But in 2007, we followed 15 kids for 1-1 ½ years and we saw that there was a correlation between high cortisol, (pre bedtime) cortisol, and decreased volume from time1 to time 2 of the hippocampus. 

Of course, the hippocampus is important for memory storage and retrieval so we did a task in functional MRI, a verbal declarative memory task, to look at encoding and retrieval in kids. We saw that in the control/healthy group, with no history of trauma and no PTSD symptoms, was activating significantly more hippocampus than the PTSD kids were. So we were not seeing the volume differences but, functionally, you can see that the hippocampus really does not work as well in kids with PTSD. 

We then decided to look at emotional regulation. We did the faces task and saw that kids that have PTSD activate their amygdala significantly earlier when viewing an angry face. When viewing a fearful face, there was a trend for their pre-frontal cortex to not be as activated as it was in the healthy controls. But the interesting thing about the amygdala activation is that, potentially, what we are talking about is a neuro functional marker of hyperarousability for these kids who have a history of exposure to interpersonal violence. For these kids, the face of someone angry is a cue/trigger and we here see the amygdala getting activated.

So then, we started thinking that treatments that treat these kids better pay attention to emotional regulation, memory processing, and executive function. The other thing we realized is  that we could increase the empirical validity of some treatment interventions by demonstrating that they can lower cortisol or decrease amygdala function on this task and so forth.

SJ: What are the most common misperceptions/misunderstandings regarding the impact of traumatic stress on child development?

VC: There used to be this idea that children were resilient just by virtue of being children but there is no literature to really back that up. In fact, we know the opposite. We know that you are more vulnerable when you are younger, when you do not have defensive styles, when your brain is still developing, when your physiology is still developing. It affects you more.

SJ: What are effective treatments for children with PTSD? (psychological therapies and pharmacotherapies)

VC: Trauma focus cognitive behavioral therapy is the treatment of choice.  It is a treatment that was developed to treat children who have experienced sexual abuse but it has now been adapted to be used in different settings including for children who have witnessed  domestic violence.

One of the things that Judith Cohen (the developer of trauma focused CBT) and I are talking about is the need to develop algorithms for treatment.  So, the age of the kids, the type of trauma and duration of the trauma would determine which specific treatment a child would get.

But certainly, the first line of intervention for children that have PTSD is psychosocial interventions and it is not medication. Now, do I use medication? Yes. I use medication in 2 scenarios. One, when there is comorbidity and the comorbidity in PTSD is high, it is 80%. So if the child has major depression, in addition to the PTSD, I would want to treat that. That is one scenario. The other scenario is when the severity is so high that this individual may have difficulties engaging in their psychosocial treatment.

But the reality is that we have no pharmacological agent that would target all the neurotransmitter systems that traumatic stress impacts.

We actually developed a manual to treat kids called the Cue-Centred Treatment Protocol.  The whole idea here is that it is a hybrid. It has different components that we know help kids, it has: CBT, exposure and psycho education and insight orientated therapy. But the main thing that it does is that it empowers children to be their own agent of change. It is not so much about processing a narrative as teaching you how important a narrative is because the chances that these kids will continue to have traumas after we finish treatment is still pretty high and we want these kids to be equipped in knowing what to do.

 We did a randomized controlled trial in East Palo Alto and Hunters Point in Bayview at some schools there and the treatment has shown efficacy to decrease PTSD symptoms and anxiety symptoms when compared to kids put on a wait list.

There are some family interventions too. One is called parent-child psychotherapy. This is worked by Alicia Lieberman at UCSF

 where she helps children age zero to 5. It gives treatment to both the parent and the child, it is more about their dyad, their relationship and that has also been shown to be effective.

SJ: What are the factors that determine how children, with PTSD, will respond to treatment?

VC:       With children, there are 3 factors that we think are very important to the outcome of the psychosocial intervention: Intelligence, motivation, and psychological mindedness. If a child is motivated and they can talk about feelings and they are smart, then the treatments will likely work. For some special populations, like children with mental retardation that get traumatized or children in the juvenile justice system we still need more effective treatments.

SJ: What types of preventative interventions/public health measures do you think are key to reducing the amount of violence children in our society are exposed too?

VC:       One of the things that I have done for the past 3 years is that I have been part of this coalition in San Francisco where we have built an ecological approach to the problem of trauma. Rather than just concentrating on models or treatments for the individual, we think of the whole system. We think about their school, we think about their family and how can we, in one place, do preventive work or treatment.  We have developed this Centre for Youth Wellness (CYW) which is a place that integrates paediatric care with mental health. So, every time they come for their paediatric checks, they get additional screenings for trauma. In that way, we know very early if they had traumatic events or not and then we start working with them, but not only with them, with their families and with the primary care team that is taking care of them in the same place.

 The CYW is also co-located with the CAC i.e. the Child Advocacy Centre. The CAC is the place that, when something traumatic happens, the child will come here get their forensic evaluations and physical exams etc. So, if that family shows up with kids to the CAC, the other siblings can be enrolled right away in the Centre for Youth Wellness. So, we are concentrating a lot on prevention, on interdisciplinary work and concentrating on developing new treatment methods that are empirically validated.

At Ravenswood Family Health Centre, here in East Palo Alto, we have this model where we have a behavioral health worker working with the pediatricians.  We looked at referrals and found that when we did a “warm hand off” (between psychiatry and the behavioural health person) there was significantly more follow through and less no shows for treatment.

SJ: What do you envision will be key obstacles to progression in this field?  Or what are the major controversies in this field that need to be resolved?

VC:       The way that ground mechanisms work in terms of funding for 3 or 5 years or maybe even less than that.  This makes follow up research very difficult. We need longitudinal studies to advance our knowledge of what goes on in PTSD.

SJ: What do you envision will be key advances in the treatment/understanding/prevention of traumatic stress in children in the next 10-20 years?

VC: I think working with mathematicians will advance our field, because I think that mathematical formulas are going to help us understand how these variables interact with each other e.g. like genetics and severity of the traumatic event.

I get excited about treatment interventions that can demonstrate that they can actually alter the physiology of someone who struggles with PTSD.

I am excited to know more about how stressors and traumatic events impact the physical health of the individual, for example, through atherosclerosis or pro-inflammation and things like that.  This will inform not only our psychiatric practice but I think medicine in general and the role of environment in medicine.

 

 

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Time to screen postpartum women for depression and suicidality to save lives?

By James Coyne PhD
Posted: March 25, 2013

In what is billed as possibly the largest study of its kind ever, a team led by psychiatrist Katherine Wisner approached over 17,000 women during their maternity hospitalization. The investigator team succeeded in screening over 10,000 for depression and in providing diagnostic interviews to 973 of those who screened positive.

Early release of the report of the study at JAMA Psychiatry generated considerable media coverage, from bloggers to NPR radio and CBS news.

NPR radio:

It turned out that 14 percent of the women were at an increased risk of postpartum depression, which is consistent with what other studies have found. But in Sit’s [Dorothy Sit, M.D., one of the study investigators], home visits for further evaluation revealed that in many cases, the symptoms were very serious.

“We discovered 20 percent had suicidal thoughts — these are thoughts of death, thoughts of wanting to die, not wanting to wake up, just escape,” Sit says. “In fact, some patients with very severe symptoms had made the decision to take their lives.”

CBS News:

Sit believes that all pregnant women and new moms should be screened for depression ideally at home so they can get diagnosed and receive treatment sooner, but even a clinical questionnaire may help. Lead author Dr. Katherine L. Wisner, a professor at Northwestern Medicine in Chicago, agreed. She added…that suicide makes up 20 percent of postpartum deaths, and is the second most common cause of death in postpartum women.

“Most of these women would not have been screened and therefore would not have been identified as seriously at risk,” Wisner explained to UPI. “We believe screening will save lives.”

June Horowitz, Professor of Nursing at Boston College and a postpartum depression researcher but who was not involved in the study, chimed in with CBS News:

“I think we still in this country really do not recognize mental health issues, we still have that Puritan, pull-yourself-up-by-your-bootstraps, be-tough attitude,” she said.

“It should be the gold standard that everyone gets screened for postpartum depression,” she added.

Yet, the American College of Obstetrics and Gynecology is still withholding a full endorsement of routine screening, saying that more evidence is needed before a recommendation can be made. How could that be?

The abstract of the JAMA psychiatry article is available here. Unfortunately the article itself is not open access, but if you email the lead author at katherine.wisner@northwestern.edu with the message…

Dear Professor Wisner: I would very much appreciate a PDF of Onset Timing, Thoughts of Self-harm, and Diagnoses in Postpartum Women…, which appeared in JAMA Psychiatry. Thank you in advance.

…I’m sure she would be pleased to send you the PDF.

The article reports a large, well resourced, NIMH funded study, but I am going to argue that it has serious limitations. Strong claims are made about the value of routinely screening pregnant and postpartum women for depression, the risk of suicide that screening would reveal among these women, the presence of unrecognized and untreated bipolar disorder, and the potential for saving lives with screening.

While the authors did an impressively effective job of packaging the research, getting it published in a high impact journal, and publicizing it in the media, the take away message was simplistic and misleading.

I know, these criticisms are rather harsh. If you have accessed this article through a University library website or successfully obtained a PDF from the lead author, you can read it ahead of time or you can read it as you follow along, and decide for yourself.

As with the last blog post, this study also needs to be situated in the context of the American healthcare system.

Many low income women in the United States have only inadequate insurance or none at all. They immediately qualify for Medicaid when they are found to be pregnant, but this insurance is canceled six weeks after delivery of their infant. Even having Medicaid is not a guaranteed access to depression care, because many psychiatrists and psychologists refuse to accept Medicaid because of what they consider too low reimbursement for services. But when their Medicaid eligibility is canceled, care for depression that low income women had been getting while pregnant would have to shift to community mental health centers.  As is immediately apparent when someone enters a waiting room of a community mental health center, they serve mainly the severely mentally ill and dual diagnosis patients with substance abuse and severe mental illness. The waiting rooms of such settings can be frightening places for a new mother, particularly one who does not have a babysitter and must bring her infant with her.

As many as half of all low income women do not show up for their well baby visit and so are lost from the medical system. Many American women, both low income and otherwise, concentrate on medical care for their infant rather than themselves, and so pediatric care becomes the only possible site for identifying mothers’ postpartum depression. Unfortunately, pediatricians are not comfortable diagnosing and treating adult depression. These facts need to be taken into account when discussing proposals for screening and treating postpartum depression that include getting women into treatment quickly. It just won’t happen without a radical redesign of the system..

Methods

The study was conducted at an urban obstetrical hospital in Pittsburgh. Women who delivered a live infant were visited by a nurse or social worker on the ward who gave them information about the screening study. Those who agreed to participate were then screened by telephone for six weeks postpartum.

Screening was done with the Edinburgh Postpartum Depression Scale.

The 10 item scale is the one most commonly used for such purposes, but is hardly ideal. From item to item, the scoring key varies and reverses in ways that can be very confusing to patients and to clinic staff trying to score the instrument. You can see it here. Try to imagine filling it out in a visit as a pregnant woman in a busy obstetric clinic waiting room and decide whether you could keep track of the reversing of item content and flipping of scoring keys, without being alerted to them.

The EPDS was constructed in British colloquial English, and a quaint item 6, “Things are getting on top of me” confuses American women. When we were using it in a screening project at a Medicaid clinic, a woman muttered aloud in the waiting room, “Damn, that’s how I got here!” in response to item 6. Although there is poor validation of cut points for the EPDS, scores of 10 or 13 and higher are commonly used to determine positive screens and therefore the need for further evaluation.

Determination of self-harm in this study-or what was later called “suicidal thoughts” in the media-was entirely based on responses to item 10 of the EDPS, “The thought of harming myself as occurred to me,” With a timeframe of the past 7 days, the 4 response options being yes, quite often; sometimes; hardly ever; and never.

All women who screen positive were offered a psychiatric evaluation at their homes, and if they declined, they were offered a shorter telephone assessment of whether they had major depressive disorder. Those who opted for the home interview received the complete Structured Clinical Interview for DSM-IV (SCID), but those opted for the telephone assessment received only the portion of the SCID focusing on major depression.

Results

Of the 17601 women approached, 17426 were eligible and agreed to telephone screening. The investigators were able to contact and screen 10,000 of them. Of the 1396 women who screened positive, 826 accepted a home interview and 147 accepted the telephone screen for major depression.

This is an ambitious study, but lots of women are lost from it, from the initial request for them to consent to participation in the study, and at each step forward.  Let’s do some simple calculations. The investigators succeeded in screening  10,000/17426 or 57% of the eligible women they approached. They were then able to do diagnostic interviews in the homes of 826/1396 or 59% of the women screening positive. So, a rough estimate is that results of were obtained from (.57) x (.59) = 34% of the women eligible for an extensive interview, and it is on the basis of these interviews that the strongest claims are made.

This is a low proportion of recruiting and retaining pregnant and postpartum women, certainly lower than what my colleagues and I have obtained in other studies, and could bias results. Busy new mothers may not be interested in getting an extensive psychiatric interview at home. The investigators offered $40 which undoubtedly increased participation, but may have biased the final sample toward women who needed the money.  And you can also see in the method section that the screening was part of recruitment for a randomized trial for management of depression. If women have adequate insurance, they would be less motivated to sign up for screening leading them to a clinical trial in which they may not get the treatment they prefer. On the other hand, low income, uninsured women may be attracted to the possibility of getting treatment they could otherwise not afford. So, a there is a further bias of oversampling  low income women seeking the possibility of free care that they could not otherwise obtain.

Consistent with this criticism, the article indicates that the women who accepted a home visit had higher mean EPDS scores. They were younger, less educated, and more likely to be African American, on Medicaid or uninsured, and single.

Among the women receiving the more extensive diagnostic interview at home, the most common primary diagnosis was unipolar depressive disorder (566 women, 68.5%) with 514 (90.8%) having major depressive disorder. Most women with unipolar depression also had a comorbid anxiety disorder.

A “striking” 187 women (22.6%) were found to have a bipolar disorder.

Note that these percentages are calculated using the biased sample of women who completed a home interview, who, in turn, are a biased sample of those who scored positive on the questionnaire, who, in turn, are a biased sample of those approached in the waiting room. If the authors had provided simple estimates of the prevalence of psychiatric disorder they found in the waiting room, these estimates could be evaluated by direct comparisons with the existing literature, but unfortunately these numbers were not provided.

Overall, 98% of the women who scored above the cut point of 10 had a psychiatric disorder.

Having conducted this kind of research, I find this result astonishing and inconsistent with the rest of the literature. A low cut point of 10 on the EPDS is sometimes set so that no depression will be missed, but that comes at the cost of having to interview a lot of women who don’t turn out to be depressed. Most will not be. Technically, the issue is one of sacrificing specificity for sensitivity.

Those of us who are concerned about such things keep emphasizing to clinicians that a score on a questionnaire is no substitute for a careful interviewing of patients to see if they are actually depressed. We do not want to encourage overdiagnosis and overtreatment. Yet, if we take these results at face, clinician should be able to assume that most of the women who score above even this low threshold have a psychiatric disorder.

Then there is the issue of such a high proportion of women above this modest cut point being found to have a bipolar disorder. There is not a lot of literature concerning identifying postpartum women with bipolar disorder using this particular questionnaire, but I think many postpartum depression researchers like myself would find this figure so out of the range of expectations as to cause doubts about the validity of the study.

Picking up on the potential bias that I noted, many low income pregnant women are not married and often have conflictful relationships with the biological father, whom they do not necessarily live with, certainly by the time they have delivered their baby. When interviewers lack cultural sensitivity, these intermittent periods of irritability, outright , and emotional upset that might be interpreted as hypomanic episodes. Any substance abuse by the women or even the biological fathers can further complicate making diagnosis of a bipolar disorder in the women: women’s episodes of anger and conflict associated with their own or the father’s substance abuse might be misconstrued as a hypomanic episode. Certainly, there is evidence that insufficiently trained and supervised interviewers misdiagnose bipolar disorder and, in general, that the diagnosis is being made too casually in the community. Many persons reporting having been diagnosed are not even at risk for bipolar disorder.

There may be an additional bias of attaching a psychiatric label to normal phenomena in doing psychiatric interviews with new mothers. I am sure you have heard of the common and normal experience of postpartum blues. But what is less known that in the first five days after giving birth, about 15% of women experience a fleeting period in which their mood is elevated. They may feel particularly good and talk a lot. These women typically do not experience impairment in the social functioning or as a mother. If you examine the criteria for hypomanic episode, you can see that these criteria might be stretched to include a lot of these women, because they only need to meet four of the nine vague criteria. Yet it is not at all clear that these women should be considered as having a psychiatric disorder, and there are no evidence-based treatments or even an established need for treatment. Nonetheless, it’s conceivable that overzealous interviewers would classify them as having hypomanic episode and therefore bipolar 2 disorder. Making statements to the media counting these patients as having bipolar disorder is misleading.

Yet, the authors’ interpretation dismisses that possibility of bias and turns a weakness of the EPDS into a strength:

This figure is likely to be an underestimate of bipolar disorder episode frequency because the EPDS does not screen specifically for the hypomanic/manic phase of the disorder. The postpartum period carries the highest lifetime risk for first-onset and recurrent episodes of bipolar disorder.

They go on to highlight the importance of their finding

Recognition of bipolar disorder is the most important prerequisite for adequate treatment. Many patients receive treatment for comorbid psychiatric disorders, but lack of recognition of the underlying bipolar disorder results in few receiving appropriate treatment. Half of women with “treatment-resistant” PPD actually have bipolar disorder…Treatment of the depressed phase of bipolar disorder with a mood stabilizer and an antidepressant does not confer benefit beyond treatment with a mood stabilizer alone. Given the critical importance of birth as a life event for families, detection and treatment of bipolar disorder among childbearing women has major public health significance.

I find the claims made in the direct quotes from the investigator team to the media concerning self harm, or, as it is described there, suicidality, even more controversial, and so I will quote results as directly described in the article:

In the sample of 10 000 women who underwent screening, 319 (3.2%) had thoughts of self-harm, including 8 who endorsed “yes, quite often”; 65, “sometimes”; and 246, “hardly ever.”

Note that of the 10,000 women, few had thoughts of self harm and only 8 endorsed quite often. And, contrary to the way these results are presented in the media, this is not a question about suicidality, but about self harm. We actually get quite similar results with the EPDS item 10 in an ongoing study of women drawn from obstetric waiting rooms, but we give a very different interpretation. This item is notoriously nonspecific and only very weakly related to attempted or completed suicide. Think of it: it covers non-suicidal, fleeting thoughts like a woman feeling like she wants to bang her head on the wall or pinch or hit herself in frustration. Endorsing this item with other than a response of “never” is not strongly related to mental health or well being because most endorsements are not strong endorsements.  Comparisons between answers to item 10 and what is said in an interview find that only a response of “yes, quite often” is related to suicidality and so only 8/10,000 of this sample is at risk.

This investigator team actually had much higher-quality data available from the SCID, which poses more specific questions about suicide and allows interviewers to explain the questions and probe patient responses. I’m quite confident that if the investigators had reported their own findings, they would be much less impressive, even if more accurate.

If we accepted at face what the investigators say in the article and are quoted as saying in the media.

We would conclude that women who are pregnant and who have just delivered a baby should be routinely screened for depression. Most having even modest elevations on the screening questionnaire have a psychiatric disorder. A considerable portion of those with elevated score are suicidal and suicide, we are told, is one of the leading cause of deaths in this time of women’s lives. So, when doing screening, a mental health professional should be nearby to deal with the prevalent “suicidality.” While routine screening could lead to effective treatment and saving lives, there is a danger because many of these women who screen positive because they actually have bipolar disorder, and so been given antidepressant could trigger a manic episode. So, we should have a psychiatrist readily available to determine whether they are suffering from a bipolar disorder.

Contrast with what is available in the literature.

Readers who uncritically accept what is available in the article and the media coverage might be surprised to find in the existing literature:

Conflict of interest in the promotion of treatment of pregnant and postpartum women with antidepressants and mood stabilizers

Considerable concern has been expressed that what professionals tell pregnant women about medication for depression and other mood disorders is tainted by substantial and sometimes undeclared conflicts of interest. Many prominent investigators receive funding for serving as advisors to pharmaceutical industry and giving talks to clinicians concerning the safety and efficacy of antidepressants. An article from on the bias in the published literature from the Investigative Fund at the Nation Institute specifically mentions Dr. Wisner’s ties to Pfizer, GlaxoSmithKline and Eli Lilly.

The conflict of interest disclosure for this article indicates that Dr. Wisner participates in the advisory board for Eli Lilly and that Dr. Wisniewski is a consultant with a number of pharmaceutical companies.  You decide if this appearance of a conflict of interest might have influenced recommendations for screening with the need for a psychiatrist present and that is likely lead to overdiagnosis and overtreatment with antidepressants and mood stabilizers.

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Coordinating depression treatment from afar: Are results credible?

By James Coyne PhD
Posted: March 12, 2013

A March 7, 2013 article in JAMA Internal Medicine claimed that depressed heart patients improved with a treatment involving “centralized, stepped, patient preference-based treatment” and that benefits were substantially greater than seen in past intervention studies. The trial, called the Comparison of Depression Interventions after Acute Coronary Syndrome (CODIACS) should get a lot of attention. The article is already being picked up on the web with headlines like “Distance Program Helps Depressed Heart Patients” and “Treating Post-ACS Depression Effective, Cost-Neutral.”

Reading the article a number of times left me with doubts that the trial actually demonstrated the efficacy of the intervention in ways that could be generalized to real world settings, despite the trial having been conducted in the community. But the article also prompted me to think about the dysfunctional, fragmented system of care for depression in general medical settings in America, how poor the treatment is that patients get there, and the difficulty doing meaningful research in this context.

The report of the study, along with a thoughtful editorial commentary, are available open access from the journal. I encourage you to read the article now, ahead of proceeding, or read it along with this blog post, and see if you can see what I saw and whether you agree with my assessments. I am going to be offering an unconventional, but hopefully, in the end, persuasive, analysis that concludes that this trial did not show much that we did not already know. Regardless, we can learn something from this article about interpreting the results of clinical trials for depression, with the added bonus of this article showing how to effectively write a report of a clinical trial in a way that captures attention. This article is a truly masterful example.

Patients. The 150 patients were recruited across five sites, with 73 randomized to the intervention group and 77 to the routine care group. To be eligible, patients had to have elevated scores on the Beck Depression Inventory, a self-report depression questionnaire and to be two to six months after hospitalization for an acute cardiac syndrome, which could be a myocardial infarction (heart attack) or unstable angina.

There were no formal diagnostic interviews conducted, so patients were not required to have a diagnosable depression of the kind for which there are established treatment guidelines. Entry into the study required a score of 10 or greater on the Beck Depression Inventory on at least two occasions or a score >15 on one occasion, but this yields a sample with many, and perhaps most patients not actually being clinically depressed.

The treatment. Patients assigned to the intervention group obtained treatment from an interdisciplinary team of professionals including a local physician or advanced practice nurse and a therapist, with psychiatric and psychological supervisors monitoring treatment and patient progress from a centralized location. Patients got their choice of treatments: problem-solving therapy, medication, a combination, or neither. Problem-solving treatment is a form of cognitive behavior therapy that is practically oriented, and provides patients with the tools to tackle everyday problems that they identify as being tied to their depression. If patients chose this therapy, it was first delivered over the Internet by way of interactive video phone calls. Subsequent sessions were provided by video calls or telephones at either the clinic or the patient’s home, depending on the patient’s preference.

Patients in the active treatment group who chose antidepressant medication were interviewed by a local physician or nurse, with the patient and this local health provider having to reach agreement on the appropriate medication based on the patient’s past experience with antidepressants and current symptoms. The patients were first interviewed face to face at 1 to 2 week intervals and then every three weeks.

The intervention has some state of the art features and if we think of patients assigned to it getting a Mercedes, then the patients assigned to the routine care condition got a skateboard. Their primary care physician or cardiologist was simply informed of their participation in this study and their score on the depression questionnaire. The patients were then free to obtain whatever depression care that they could from the physician or another health care provider, but, as we will see, there were substantial barriers to their getting treatment and few, who were not already receiving treatment, did so subsequently.

Given the study was conducted in the United States, is important to know whether treatment was free or if patients had to pay for it, either out of their pocket or with insurance and often substantial co-pay. This information is not provided in the article, but I emailed the first author, who indicated that treatment was free in the intervention condition, but patients had to pay for any treatment if they were assigned to routine care. There are a couple of issues here. First, patients may have been motivated to enroll the study rather than simply get treatment through their health care provider solely because of the 50:50 chance of getting treatment that they could not otherwise afford. Second, being assigned to the intervention rather than the control group meant patients not only getting a complex intervention probably not readily available elsewhere, but getting it free. So, any difference in outcomes between the intervention versus control group could be due to patients being getting free treatment they wanted at their choice of their home or a clinic, not the specifics of the treatment. Maybe all we need to improve the outcome of depression is to make treatment free and readily available, rather than with all these bells and whistles. Finally, differences in outcomes might reflect patients being assigned to the control group registering their disappointment of not being assigned to the intervention group, not the benefits of the intervention. The outcomes for the patients assigned to routine care could thus be artificially lowered so that the intervention looked more effective.

Treatment already being received. Rates of treatment with antidepressants in the United States and western European countries are high, and the number of people on antidepressants probably exceeds the number of people who are depressed, even allowing for lots of depressed people not getting treatment. In this study, 27 of the patients assigned to the intervention arm of the study and 26 of the patients assigned to routine care were already receiving an antidepressant. So, we need to take into account any increases in this number. It is to the authors’ credit that they even reported this. Most studies of enhanced care for depression do not disclose the extent to which patients being enrolled are already in treatment, so the readers left assuming that patients were not already in treatment or having to guess the extent to which they were, without much information to go on.

Much of the antidepressant treatment patients were already receiving was inappropriate or ineffective. It is estimated that 40% of patients in general medical settings who receive an antidepressant derive no benefit over simply remaining on a waiting list. That is because some of the treatment is provided to patients who are too mildly depressed to show benefit or who are simply not even depressed, and among patients who are sufficiently depressed to benefit, there is inadequate patient education and follow up. It is important to emphasize that antidepressants do not make unhappy people happy. Rather, the effectiveness of these drugs is limited to persons who have a diagnosable depression, who, in the case of this study may have been in a minority.

Routine management of depression in general medical settings in the United States is so poor that patients receiving antidepressants often do not obtain the benefit that they would have gotten from assignment to a pill placebo condition in a clinical trial. Practice guidelines dictate that patients be contacted at five weeks after starting an antidepressant. If improvement is not apparent, their dose should be adjusted, they should be switched to another antidepressant, or maybe they just be given some education about the need for adherence. Guidelines dictate this, but are notoriously ineffective in ensuring that patients get the necessary follow up. Patients getting an initial prescription for an antidepressant from a primary care physician very may simply disappear into the community, often without even renewing their prescription.

In contrast, patients being assigned to a pill placebo condition in a clinical trial get much more than a sugar pill, they get positive expectations and a lot of regular attention and support. Any differences found between an antidepressant and a pill placebo condition in a clinical trial has to be in addition to this attention and support, because patients are blinded as to whether they are getting an antidepressant or pill placebo.

Figure 2

Results of the trial. Patients assigned to the intervention group dropped an average of 3.5 points more on the depression questionnaire, relative to patients assigned to the routine care. Take a look at Figure 2 from the article, which compares this trial to other data concerning treatment for depression. It involves a blobbogram or forest plot of this and past studies. To understand what that means, you can click on this link, or you can go to the excellent, readily understandable discussion on pages 14 to 18 of Ben Goldacre’s Bad Pharma. But for our purposes, it would not be an outrageous distortion to think of this forest plot as being a snapshot of a horse race. (I know, an oversimplification, and past co-authors on meta-analyses, please forgive me.) The horse out in front represents results of this CODIACS trial, and the only other horse almost neck and neck represents results of the COPES randomized controlled trial, which served as preliminary work for the CODIACS trial, which was conducted by the same authors.

Three and a half points on a Beck Depression Inventory with range of possible scores from 0 to 64 does not sound like much, but this could be an exceptional finding. Figure 2 shows that, along with an earlier study done in preparation for it, exceed the effects found in meta-analyses (a statistical tool for integrating results of different studies) for other complex (collaborative care) interventions in medical settings, represented by the horse at the top of the diagram; meta-analyses of published and unpublished clinical trials of SSRI antidepressants, represented as the next horse down; meta-analyses of only published trials of SSRI antidepressants, which, because of publication bias are higher, represented by the next horse down; and a variety of single trials. We are therefore talking about an apparently big effect, especially for a group with low depressive symptoms to begin with.

Yet, before you conclude “wow!”  we need to ask if this is really that impressive. It is important to note that effect sizes obtained in clinical trials depend not only on changes observed in the intervention group, but also changes observed in the control group. A control group showing little change can make an otherwise mediocre intervention look impressive. In the case of this trial, there was no change in the routine care group. So, we might simply be comparing doing a whole lot with this intervention to doing basically nothing, without getting at what of the “whole lot” mattered for outcome.

If we go to the meta-analysis of collaborative care trials represented by the top horse, we find that it considered 37 trials involving  12,355 depressed patients. The results were strong enough to recommend implementation, but–do check this out–only in the United States (!). Trials conducted outside the United States did not demonstrate a significant effect on patient outcomes of improving routine care for depression in this manner. Why– because the other countries are too primitive to benefit? Hardly, the other countries are mainly the United Kingdom and the Netherlands, where routine care for depression is less fragmented and poses less of a financial burden on patients. So, we might infer that collaborative care works best in contexts, like the United States, in which there is lots of room for improvement in routine care for depression, including making it less costly to patients.

Returning to our discussion of the CODIACS trial, we can find an alternative expression of its results, namely, that 24 patients in the active treatment group achieved remission of depression, and 16 in the usual care. Thus, 49 patients in the active treatment group and 57 patients in the routine care group remained depressed. This is not atypical, and shows just how far we have to go in getting better outcomes for treatment of depression in the community, better even than claimed for this CODIACS trial. Despite being the horse out ahead of the pack, the study left most patients still with their depression.

Treatment received after patients were randomized to intervention or control group. In the intervention group, the number of patients on antidepressants went from 27 to 37 out of 73, and for the routine care group, the number went from 26 to 28 out of 76. These are not impressive numbers. The number of patients in the intervention group receiving psychotherapy increased from 6 to 48, and the number in the control group increased from 7 to 14. These are more impressive numbers, and consistent with the view that patients identified as depressed in general medical care often have difficulties completing appropriate, affordable psychotherapy, unless there is some assistance. Note too that the therapy for the intervention group was provided wherever the patient preferred, either in the convenience of their home or at a clinic.

A number of factors could explain these differences in the therapy received by the intervention versus the control group. Patients in the intervention group could have been getting more psychotherapy at follow-up because they are encouraged to do so, because it was free, or because it was more readily available and convenient than what patients got in routine care group, where they might not be able to find a therapist with fees they could afford, even if they looked hard.

So, we can conclude that the intervention modestly increased the number of patients on antidepressants and rather substantially increased the number of patients getting Internet provided psychotherapy, whereas being assigned to the control group meant not much change in treatment. The net effect was a change in depression scores, but largely driven by not much happening in the routine care group.

Cost analysis. The authors concluded that healthcare did not cost more for patients assigned to the intervention group versus the control group. They arrived at this conclusion by combining the cost of mental health care, which was higher for the intervention group, with cost of general medical care, which was lower for the intervention group. We cannot take this assessment of no increase in cost too seriously. These estimates are based on very small numbers of patients and they do not take into account the considerable cost of setting up, staffing, and maintaining this complex centralized system. I think these cost would leave this complex intervention like many other complex, collaborative care interventions for depression feasible within a research trial, but not sustainable in routine care. A commentary on a cost analysis of the authors’ earlier COPES study noted

One cannot compare the cost of coq au vin and a glass of pinot noir at a local French restaurant to the same meal in Paris without including the cost of airfare and hotel. The cost of enhanced depression care is like the cost of the French meal; the real cost must include all other expenses for the trip to get us there.

And it is probably unrealistic to assume we can improve the treatment of depression with no increase in costs, anyway.

From this article, we don’t really learn

  • How many of these patients were actually clinically depressed.
  • Whether treatment with antidepressants was appropriate for these patients
  • The quality of care patients were receiving in routine care, either before randomization or after but there is reason to believe that it was quite in adequate.
  • Whether encouragement, cost, or accessibility led to more psychotherapy being received by the patients in the intervention group
  • Whether any of the active components of the intervention decisively mattered, rather than positive expectations, attention and support that the patients received.

Bottom line: in the context of the usually poor care for depression in general medical settings in the United States, we don’t know if this kind of intensity is needed to achieve better outcomes or if lower intensity interventions could have achieved much the same effect.

Maybe we are indeed observing in the effects of a powerful intervention in the CODIACS trial. But we cannot rule out that what we are seeing is a false signal among a lot of noise. To really detect a powerful effect due to the intervention, we would need different patients in a comparison group drawn from a different setting. A trial reporting an intervention being better than routine care for depression does not demonstrate that the intervention is good, nor does it identify that the intervention is the source of the apparent effect.

Just what is this routine care being provided anyway? Three of the authors of this article have co-authored an excellent paper on how having routine care as the comparison group for an intervention does not necessarily allow us to say much about the effectiveness of the intervention.  It needs to be established that the routine care was adequate, or if the intervention simply compensated for the inadequacy of routine care in a way that lots of interventions could have. And then there is the ethical requirement of equipoise. It dictates that researchers have a reasonable assumption that the treatments they are offering to patients in a clinical trial are reasonably equivalent. Could the investigator team justify the needed assumption that they were offering equivalent treatment to the two groups?

If routine care is a car with bad spark plugs, all one needs is new spark plugs. However, it would be a mistake to generalize from a trial in which the intervention was the equivalent of providing new spark plugs that the same intervention would work for other cars that are not in need of such repairs.

How common is it that quite modestly sized studies like the CODIACS and its predecessor COPES trial finish way ahead of the pack of other, mostly larger studies, only to not be replicated? The accompanying editorial commentary by Gregory Simon, who has been involved a number of important studies of collaborative care, indicates this pattern is all too common. John Ioannidis has demonstrated that is more generally common in medicine in a paper aptly entitled “why most discoveries are inflated?” Other authors have referred to this pattern as the decline effect.

Before clinicians and policy makers invest in this complex intervention, we should see what happens if we simply offered free, better quality and more appropriate antidepressant treatment, but also access to this kind of psychotherapy, which is difficult for general medical care patients to obtain. I would not be surprised if the same effects could be achieved simply by providing this access without this complex intervention. Or, before we conclude that this intervention have features that were particularly effective, we should at least similarly pay for the treatment of patients in the intervention and control groups and that might in itself take away any differences between the intervention the control group.

Will publicizing of this study encourage overtreatment of patients who are not depressed with antidepressants? Maybe. One thing that I am uncomfortable with in the study is that decisions were made that patients were “depressed” and very likely even the type of treatment offered based solely on questionnaires. Sure, physicians and nurses discussed treatment with the patients, but notoriously primary-care providers don’t do a formal diagnostic interview or even ask for a many questions coming to a decision that patient is depressed. The exclusive reliance on the questionnaires in this study sends the wrong message and is a poor model for routine care. We already faced with the problem of considerable overtreatment with antidepressants but undermanagement, and if this study is taken seriously, it could contribute to that trend.

The packaging and selling of this trial. I teach scientific writing in Europe and I constantly remind participants in my workshops of the need for Europeans to do a better job of promoting their work. I coach them in doing elevator talks promoting their work and themselves, which some participants find difficult and counter to ingrained cultural prohibitions against self-promotion. The Dutch, for instance, want their children and Dutch professionals warn their colleagues of the “tall poppy syndrome,” kop boven het maaiveld uitsteken! This roughly translates as ‘the tall poppy gets cut’.  I tell my European participants that they need to emulate the Americans in some ways, even if they would not want to become an American.

This article provides a masterful example of how to promote a study. It is no surprise because the list of authors include a former journal editor and associate editors and a NIH program officer. The artful persuasion starts in the abstract and introduction, which do not take for granted that the reader already has a sense of the importance of evaluating this particular intervention. In the abstract and introduction, the authors spell out just what a serious problem depression is, however is suboptimally treated, and what the consequences can be of it being left inadequately treated.

Starting in the abstract, results that are actually not all that clear cut are presented as strong effects. The abstract ends with a call for a larger, more ambitious study (funding agencies and journalists, please take note).  This is no boring “further research is needed,” but a specific call to action for a more ambitious study. A reader can quickly lose sight of our not even knowing how many of these patients were actually depressed and in the end, we don’t know if a specific component of the intervention was needed to get the difference in outcomes. We don’t even know if the apparent effects of the intervention largely depend more on the poor quality care being received by the patients assigned to the control condition. But the article does not call attention to these issues.

The argument that this intensive intervention will not cost more is seemingly compelling, when there is actually little basis for it.

In the discussion section, the possibility is raised that improving depression can lead to improved physical health outcomes among cardiac patients, including longer lives. This is a dubious assertion because there is is at present no data is to support this, but pointing to possibility is quite important in promoting the significance of this study. I’m not saying anything of what the authors do here is inappropriate, but it does go far beyond the data. So, Europeans, please study how these authors open with an impressive statement of the importance of their work and close with an elaboration of that, but also maybe where, as the Dutch would say, they go over the top.

What are we being sold in this article? I think that the CODIACS intervention has some promising elements, but represents a complex intervention that is more expensive and less sustainable than the authors note, when administrative and infrastructure costs are taken into account. Its efficacy remains to be demonstrated in trials with patients appropriately selected for clinical depression. A credible demonstration of its efficacy will require pitting it against a routine care that provides greater likelihood that depressed patients can readily access affordable treatment that is acceptable to them and that they can get the minimal professional attention to facilitate that access. The validity of routine care as an appropriate comparison/control group needs to be demonstrated, not assumed, and this requires showing that assignment of patients to it leads to at least modest increase in utilization of treatment and at least modest improvements in depression scores.

I’d be interesting in hearing from readers if they also zeroed in on what I found important about this article and whether they agree with me about just how ambiguous these findings are.

 

 

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Map the brain and name a neuron!

By Fabiana Kubke PhD
Posted: February 14, 2013

Citizen Science is now so well heard of that I rarely need to explain what it is when I bring it up. There are heaps of things going on, and a page on Scientific American does a good job of tracking projects.

And as this post goes live, so does EyeWire from Seung’s lab at MIT. It is set up as a team game where players will help map connections in the brain. More specifically the retina.

Getting to the details of the shape of neurons is hard – understanding how they are connected and how this explains how the brain works is even harder. I am still trying to get my head around the whole idea of the connectome, and indeed, I have freshly arrived in my bookshelf a copy of Seung’s book.

And of course, the winners get something, in this case naming rights.

One of my favourite neurons with a name is the Mauthner cell, which is involved in escape behavior in fish. But there are more fun names for neurons like octopus or chandelier .

Anyway. I am gutted I will be away from the internet and so will not be able to participate in thee game. I would love to be part of it. I hope you will and share what you thought about it!

HT: Nat Torkington and #NZAUOR for pointing me to it!

Did you know?

The retina, although part of the eye is considered part of the brain because early in the embryo it gets formed from a bit that buds out of the part of the early nervous system that gives rise to the brain. As far as I know it is the only “central nervous system” structure that ends up in a peripheral position. Happy to be shown wrong (and no, neural crest derivatives don’t count :)   )

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Schizophrenia Advocacy: Standing Up for Those Who Can’t Fend for Themselves

By Adrian Preda MD
Posted: February 6, 2013

There have been many takes, some discussed in the NEJM on the recent Newtown tragedy [1, 2]. While it is not known if Adam Lanza had a mental illness, mental health, and specifically schizophrenia, has been a subject of interest.

It is a surprisingly little publicized fact not only for the public at large but even within the medical community that schizophrenia represents a major public health problem. While responsible for disability at higher costs than much better known chronic diseases such as diabetes, breast cancer or AIDS, schizophrenia receives relatively little attention from the public or our legislators.

Part of the problem is that patients with schizophrenia make poorer advocates from themselves than patients with diabetes, AIDS, or cancer. Also it is the nature of the illness to correlate with a downward social drift, meaning that the majority of the patients end up in the lower socioeconomic strata, if not in a state of utter social isolation. Many times exhausted friends or families end up cutting ties with a patient who can no longer tolerate close relationships.

This tragic process results in a significant weakening of the advocacy power needed to mobilize the public to support initiatives for improved research funding and care of these patients.

The relatively weak advocacy might help explain how schizophrenia, an illness that makes it into the top ten of the World Health Organization Global Burden of Disease and results in 186 years lost to disability or premature death for every 100,000 people in the United States [3], gets not that much research dollars.

In 2008 the National Institutes of Health (NIH) allocated only $249 million dollars for schizophrenia research [4]. Over a three year span the NIH schizophrenia budget increased 6%, to a total of $264 million dollars in 2011, barely keeping up with the inflationary costs [4]. Finally, it is estimated there will be not further budget increase for schizophrenia research until 2013, which in light of an estimated inflation rate of about 2% will result in an effective 4% decrease in the total amount of funding [4].

Almost $250 million dollars might seem light a pretty big number. Which it certainly is until one asks for how does this number compare with similar numbers? Meaning, NIH funding for other chronic conditions.

To see if advocacy really makes a difference let’s compare the above numbers with numbers from a strong advocacy illness such as HIV/AIDS. According to WHO data HIV/AIDS is responsible for 127 years lost to disability or premature death for every 100,000 people in the United States, a lower number compared to schizophrenia [3]. At the same time the NIH budget for HIV/AIDS was $2,928 in 2008 –more than 10 times the money NIH spend for schizophrenia [4]. The resources allocated for HIV/AID research also increased with 4% over the same time span raising to $3,059 in 2008; further, an increase to $3,075 million dollars is projected for 2013 (while no budget increase is projected for schizophrenia research) [4].

In addition to underwhelming research advocacy the patients with schizophrenia face social and medical care discrimination. Due to social marginalization, many schizophrenia patients are homeless, uninsured, or imprisoned. Even those who manage to obtain disability have only minimal insurance, with low rates of reimbursement for time- and financially-costly medical-psychiatric care.

As a result of such multiple financial “disincentives” only a relatively small number of psychiatrists and virtually no primary care physicians commit their practices to the treatment of this very chronic population. Further, for similar reasons, only a relatively small number of scientists and clinical researchers commit their research to schizophrenia.

We certainly need a strong advocacy movement to change to care, research funding, and medical coverage for these very unfortunate members of our community.

Without it this sad reality is unlikely to change.

Bibliography

[1] R. D. Walkup JT, “Social Withdrawal and Violence – Newtown, Connecticut,” N Engl J Med, no. [Epub

ahead of print], 2012.

[2] P. S. Palfrey JS, “Preventing Gun Deaths in Children,” N Engl J Med, no. [Epub ahead of print], 2012.

[3] World Health Organization, “World Health Organization Daly Estimates,” Dec 2004. [Online].

Available: www.who.int/healthinfo/statistics/bodgbddeathdalyestimates.xls. [Accessed 03 Jan 2013].

[4] National Institutes of Health (NIH), “Estimates of Funding for Various Research, Condition, and

Disease Categories (RCDC),” 13 Feb 2012. [Online]. Available:

http://report.nih.gov/categorical_spending.aspx. [Accessed 03 Jan 2013].

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