From left: Josie Cooper, executive director of the Alliance for Patient Access, Reyna Taylor, senior vice president of public policy at the National Council for Mental Wellbeing, Meadows Institute Vice President of Health System Integration Dr. Andrew Carlo, and Meadows Institute Chief Medical Officer Dr. Roshni Koli
The total number of people in the United States obtaining an antipsychotic prescription increased from 5 million in 2013 to 6.1 million in 2018, and that number continues to grow, according to Dr. Roshni Koli, chief medical officer at the Meadows Mental Health Policy Institute.
“With these medications come the incidence of side effects, and tardive dyskinesia (TD) is one of the more underreported side effects of antipsychotics and can be very debilitating,” Koli told an audience of congressional health care staffers, business innovators and leaders from mental health advocacy and professional associations. They had all gathered at the United States Capitol Visitor Center May 22 for a briefing on increasing measurement-based assessment and care for people with serious mental illness, hosted by the Meadows Institute in coordination with the bipartisan Congressional Neuroscience Caucus.
TD is a medication-induced, hyperkinetic movement disorder that leads to a wide range of abnormal, involuntary movements that persist even after discontinuing medication, explained panelist Dr. Andrew Carlo, vice president of health system integration at the Meadows Institute. The disorder can be “irreversible, lifelong, disfiguring and disabling,” said Carlo, with major negative impacts on psychological health and quality of life due to the fact that these movements may be visible to other people.
Those involuntary movements “can be extremely embarrassing, making it difficult to have the confidence to get a job or go to social events,” Carlo added. TD affects quality of life in other ways. According to Josie Cooper, executive director of the Alliance for Patient Access, surveys show that 64% of patients with TD report that they have trouble sleeping.
Approximately 600,000 people in the United States live with TD, but doctors believe 65% have not yet been diagnosed. The diagnosis rate can be improved by increasing routine TD screenings in people treated with antipsychotic medication. That was the consensus shared by an all-star panel of experts assembled for the briefing, including Carlo, Cooper, and Reyna Taylor, senior vice president of public policy at the National Council for Mental Wellbeing, with Koli serving as the moderator.
The Meadows Institute also released a report, in collaboration with Neurocrine Biosciences, highlighting the importance of measurement-based care (MBC) for people with a serious mental illness who are treated with antipsychotics. MBC involves the systematic use of validated rating scales to assess the effectiveness of treatment and make adjustments as needed to improve outcomes.
For TD, MBC provides an effective mechanism for earlier detection and the ability to develop and routinely monitor an appropriate treatment plan for patients to help improve outcomes.
The full report, including policy recommendations, can be downloaded here: https://mmhpi.org/project/increasing-measurement-based-assessment-and-care-for-people-with-serious-mental-illness/.
“It’s important to make sure [clinicians] screen patients periodically because a lot of times people who experience TD are unaware of their symptoms for quite a while,” said Carlo, who added that family members or colleagues are usually the first to notice the signs.
Carlo, a practicing adult psychiatrist who sees patients with TD, lamented that while screening is “second nature” for physical health conditions such as high blood pressure, the same is not true for mental health.
“Rigorously assessing things through numbers has never been part of the culture of mental health,” said Carlo. That needs to change, he said.
“MBC is truly better care,” Carlo stressed, and will provide better treatment. Taylor agreed. “MBC is the wave of the future.”
