Almost 40% of Children with Bipolar Disorder May Not Receive Necessary Treatment
An article by Geller et al. in Bipolar Disorders last year illustrates the crisis in the treatment of childhood-onset bipolar illness in the US. The article indicates that almost 40% of the children with a credible diagnosis of bipolar disorder in this study never received anything near the appropriate treatment for their illness.
It is unfortunate when children fail to receive appropriate treatment because of ambiguity about a diagnosis, but it is even more frustrating when one of the world’s experts makes a diagnosis, and a child still fails to receive treatment based on consensus guidelines.
Over 8 years of follow-up treatment in their communities, these very ill children not only did not receive helpful drugs such as atypical antipsychotics or mood stabilizers, but they often received treatments that can be counterproductive, such as antidepressants or psychomotor stimulants. Those children who did receive appropriate treatment with lithium fared better and recovered significantly earlier than the others.
A variety of factors complicate early identification of bipolar illness and adequate treatment intervention. The diagnosis continues to be controversial, and the press often suggests that physicians and pharmaceutical companies conspire to inflate diagnoses for monetary gain. Treating children with bipolar disorder is difficult, often requiring long periods of time and several medications used in combination to achieve even short-term remissions, and relapses are common. At the same time, many physicians are leery of treating young children with major psychotropic agents, some of which have substantial side effects. Most importantly, there are not enough treatment-related studies to guide clinical decision-making.
There are some consensus treatment guidelines written for children of ten years of age or older with Bipolar I illness, including positive placebo-controlled data on all of the newer atypical antipsychotics. This class of drugs in addition to mood stabilizers are recommended first treatments. However, subsequent treatment options and those for different subtypes and comorbidities of bipolar disorder in children remain virtually unstudied. In addition, there are still no FDA-approved treatments for children with bipolar illness under age ten, despite the growing recognition that the illness appears in substantial numbers of children before puberty and in the earliest years of life.
These deficits in diagnoses and clinical treatment are an urgent public health problem, particularly in the U.S. where there has been a recent marked increase in the diagnosis in children. While some have argued that the illness is over-diagnosed in the U.S., even children who may not ultimately meet formal diagnostic criteria for bipolar illness are nonetheless adversely impacted by their “bipolar-like” illness, so these variants deserve systematic study and assessment of adequate treatment approaches as well.
The figures are actually even worse than Gellar’s article suggests. The treatment deficiencies noted in the article were found among patients who were carefully evaluated and diagnosed in a research setting and then treated in the community. The majority of children with bipolar illness lack access to this kind of careful evaluation. In the research network in which I participated for many years, 22% of US adults had childhood onsets of their illness (prior to age 13), and these individuals were not treated with any medications for their depressions or manias for an average of more than 15 years. The length of the delay to first treatment in childhood and adolescence was directly correlated with prospective clinician-rated measures of a poor outcome in adulthood. The longer the treatment delay, the greater the severity and duration of depression in adulthood, the fewer the days of euthymia, and the greater the number of mood episodes and days of ultradian cycling (switching within a 24 hour period).
These long delays to first treatment are ruining the lives of children, adolescents, and adults, and devastating families. Investigators in the field have called for further research in scores of articles over the past decade, but unfortunately, this has not been enough to bring attention to this issue and cause a shift in funding priorities for research. Therefore, we must publicize this issue in every conceivable realm, by calling attention to it in the media, by writing campaigns to senators and congresspeople, and by searching for private funding.
This treatment research gap could readily be fixed. It is not necessary for novel treatments to be invented. The many treatments that we already know are effective in adults with bipolar disorder should be studied more systematically for their effectiveness and tolerability in children across the spectrum of bipolar disorders ranging from Bipolar I, II, and NOS to potentially nonbipolar illnesses such as severe mood dysregulation (SMD).
During the 35 years I worked for the National Institute of Mental Health (NIMH) and my tenure as chief of the Biological Psychiatry Branch, any editorial piece like this one had to include the statement that “the views expressed here do not necessarily reflect those of the NIMH.” Because I retired from the NIMH 4 years ago after publishing close to 900 scientific manuscripts, I am no longer required to add this disclaimer. However, the views expressed here about the disastrous underfunding of research in bipolar illness, which are shared by many of my colleagues (who are not as free to comment as I am because they depend on the NIMH for funding support), do not seem to be those of the NIMH—but they should be.
The NIMH is by far the largest funding agency for research in psychiatric illness. Grants are highly competitive, and because bipolar disorder in children and adults is such a complicated illness, the needed treatment-related studies almost never get a high enough priority score to be funded. Without money set aside for treatment studies in bipolar disorder specifically, the neglect of this illness will continue indefinitely. (For example, a PubMed search of articles dating from 1980 to the present found eight times more articles on schizophrenia than on bipolar disorder, even though more than three times more people have bipolar disorder than schizophrenia).
Hundreds of thousands of children in the US will continue to get suboptimal care until new treatment-related studies are funded to better guide the clinical therapeutics of childhood onset bipolar disorder. There is one thing upon which everyone knowledgeable about the illness agrees; the children who have various bipolar disorders are very ill, and their parents are desperate for information about the best treatment approaches. Is it not about time we did something about this?
For more information about the harm caused by the lack of treatment studies in childhood onset bipolar disorder, see “The healthcare crisis of childhood-onset bipolar illness: some recommendations for its amelioration” by Post and Kowatch in the Journal of Clinical Psychiatry, and “Childhood-onset Bipolar Disorder: The Perfect Storm” by Post in Psychiatric Annals.
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