Many juvenile Batten disease patients face mental health issues: Study
Most common psychiatric diagnoses were anxiety disorders. ADHD
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Most people with juvenile Batten disease meet diagnostic criteria for at least one lifetime psychiatric disorder, according to a new study based on interviews with parents of 20 patients in Norway.
The most common psychiatric diagnoses reported in the juvenile Batten patients were anxiety disorders and attention-deficit hyperactivity disorder (ADHD).
“Our findings indicate that approximately 75% of the sample met the criteria for at least [one] lifetime psychiatric diagnosis, underscoring the significant psychiatric burden in individuals with [juvenile Batten disease],” researchers wrote. “About half of the sample had a current psychiatric disorder, with anxiety and neurodevelopmental disorders (particularly ADHD) being the most common.”
The researchers noted that while psychiatric issues were common, few patients were receiving medical care or counseling aimed at helping with these issues. This highlights a gap in psychological support for people affected by juvenile Batten disease, researchers said, emphasizing a need for clinicians to be proactive about helping families manage these issues.
“This study underscores the substantial burden of psychiatric comorbidity in individuals with CLN3, with significant implications for their overall health and functioning. Integrated care approaches that address the multifaceted needs of these individuals are critical to improving their mental health,” researchers wrote.
The study, “Neurodevelopmental and Psychiatric Disorders and the Use of Psychotropic Medications in a National Sample of Individuals With Juvenile Neuronal Ceroid Lipofuscinosis,” was published in the Journal of Child Neurology.Â
Half of patients met criteria for at least 1 ongoing psychiatric diagnosis
Juvenile Batten disease, also called juvenile neuronal ceroid lipofuscinosis or CLN3 disease, is a genetic disorder characterized by symptoms such as vision loss, cognitive changes, and behavioral challenges. Although it’s well-established that young people with this disease often experience issues with mood and behavior, there hasn’t been much formal research into whether people with this disease meet formal criteria for psychiatric diagnosis.
Studies into psychological issues for Batten patients often rely on questionnaires, but while these can be useful for evaluating symptoms, they aren’t designed to give a formal psychiatric diagnosis. In this study, 20 parents of children or young adults with juvenile Batten sat down for in-depth interviews with a psychiatrist, going over their child’s experience so the psychiatrist could determine whether or not they met criteria for psychological disorders, as outlined by the current version of the Diagnostic and Statistical Manual of Mental Disorders.
The researchers found that 10 of the patients met criteria for at least one ongoing psychiatric diagnosis. The most common diagnoses were ADHD, which is marked by problems with regulating one’s own behavior, and anxiety disorders such as phobias, or extreme fear in response to specific objects or situations.
The high prevalence of psychiatric disorders and the low use of psychotropic medications emphasize the need for multidisciplinary care that integrates psychiatric and neurologic expertise. Routine screening for psychiatric symptoms, including subthreshold symptoms, should be implemented to enable early identification and intervention.
Another five patients didn’t meet criteria for a psychiatric disorder at the time of the interview, but their history suggested they would have met criteria for one at some point prior. These previous histories of psychiatric illness were mainly related to periods of depression.
All told, 15 of the 20 patients met criteria for a current or previous psychiatric diagnosis. The researchers highlighted that some issues with behavior and mood were also reported in the remaining five patients. While these didn’t rise to the level of a psychiatric disorder, the researchers said that these psychological symptoms “can significantly impact functioning and should not be overlooked.”
Despite the high rates of psychiatric issues, the researchers noted that almost none of the patients were taking psychotropic medications like antidepressants, anti-anxiety meds, or stimulants used for ADHD. In fact, most of the patients had never been specifically referred for mental health care.
“The high prevalence of psychiatric disorders and the low use of psychotropic medications emphasize the need for multidisciplinary care that integrates psychiatric and neurologic expertise. Routine screening for psychiatric symptoms, including subthreshold symptoms, should be implemented to enable early identification and intervention,” the researchers concluded.
