This week we review two related research studies that describe neuropsychiatric symptoms in Huntington's. The first is an old study (2001) of diagnosed Huntington's patients. The second is a more recent study (2007) of gene positive individuals before or during the onset of motor symptoms. It is no surprise to Huntington's families that high rates of neuropsychiatric symptoms occurred in both groups. However what Dr. Goodman finds surprising is how few were treated.
The Goal: The goal in the first study was to identify psychiatric symptoms experienced by 52 Huntington's individuals over the previous month [Paulsen JS 2001]. The goal in the second study was similar, to identify symptoms experienced by 83 gene carriers who were divided into three groups; those with (1) no motor symptoms, (2) "suggestive" motor symptoms, and (3) manifest motor symptoms [Marshall J 2007].
The Method: In the first study, caregivers answered a questionaire on symptoms experienced by their Huntington's family member over the previous month. In the second study, participants directly answered their own questionaire.
The Results: In the first study, per caregiver report, all except one symptomatic Huntington's person had experienced at least one neuropsychiatric symptom in the past month. Most had two or more symptoms. Dysphoria, or depressed mood was most common (70%). Agitation, irritability, apathy, and anxiety were other symptoms experienced by more than 50%. At the time of this study in 2001, only 4 of 52 patients were being treated with antidepressants or other psychiatric meds.
The second study showed that gene carriers had more depression, anxiety and other symptoms than non-gene carriers in HD families. Psychiatric symptoms were greatest in those with early motor symptoms. In this study, 22 (out of 83) study individuals were taking antidepressant or other psychiatric medication.
Why are these studies important? There are two reasons. First, these studies confirm that virtually all diagnosed, and many preclinical individuals have significant depression and other psychiatric symptoms. And next, the results show (at least at the time of these studies) that even in HD specialty centers, Huntington's people are often not treated for disturbing psychiatric symptoms. And this lack of treatment is probably greater outside of specialty centers.
Comment: It was the authors' hope that their findings would lead to "more aggressive therapeutic intervention." We at HDDW hope so too; but we wonder what action has been taken based on these findings. Is the word getting out to doctors? Are there treatment recommendations? Are greater numbers of HD people being treated for their psychiatric symptoms based on results of these studies? Or. . . are HD people suffering unnecessarily?
Paulsen JS, Ready RE, Hamilton JM, Mega MS, Cummings JL. Neuropsychiatric aspects of Huntington's disease. J Neurol Neurosurg Psychiatry. 2001 Sep;71(3):310-4. PubMed abstract
Marshall J, White K, Weaver M, Flury Wetherill L, Hui S, Stout JC, Johnson SA, Beristain X, Gray J, Wojcieszek J, Foroud T. Specific psychiatric manifestations among preclinical Huntington disease mutation carriers. Arch Neurol. 2007 Jan;64(1):116-21. PubMed abstract