General Prevalence of Psychiatric Symptoms Makes Attribution to HD Challenging
This edition focuses on what it gained by recognizing early, pre-motor symptoms of HD. What it is like for you as the head the MedStar Georgetown HDSA Center of Excellence to deal with a patient who has psychiatric symptoms, but maybe hasn’t been tested yet, has been tested, but has no other symptoms yet, or whose symptoms are at least largely psychiatric?
It is not uncommon at our Huntington’s disease center to have people from HD families contact us with concerns about psychiatric symptoms. Particularly for those who are at risk, but have not been tested, or those who are gene-positive and presymptomatic, there can be concern about whether psychiatric symptoms such as depression or anxiety are the first symptoms of HD.
We strive to reassure them that having a behavioral symptom does not mean someone has HD, since these symptoms are so common in the general population. We discuss their symptoms and their fears about them, and encourage them to get early treatment for these symptoms.
The most important message about behavioral symptoms is that we can treat them with psychiatric medications, and no one has to be tested for HD or get an HD diagnosis to get psychiatric care. Knowing HD gene mutation status or whether someone has HD motor symptoms has little bearing on how we treat behavioral symptoms, but we know that early treatment does lead to a better outcome for people suffering from these symptoms, whatever their origin.
How do you discriminate between probable HD-related symptoms and those attributable to family stresses, for example?
We know people in HD families may experience stress due to the multigenerational nature of the illness. There is not a good way to determine whether a behavioral symptom is due to HD, growing up in an HD family environment, or other factors. It is not uncommon, when I take a family history, to hear about high levels of psychiatric illness on both sides of the family, not just the side affected by HD, because so many people in the general population have psychiatric illnesses in their families.
You have explained the difficulties of attributing psychiatric symptoms to HD or other factors, but also acknowledge that they do characterize early stages of HD. What actions might help providers confronting these symptoms in patients with an HD diagnosis, in terms of counseling and treatment?
As in psychiatry in general, we are short on specialists to evaluate patients with HD for psychiatric symptoms. I am one of the few psychiatrists working specifically in HD. I work closely with my neurology, social work, and genetics colleagues to ensure that we address factors such as cognitive symptoms or changes in medications that can contribute to psychiatric symptoms in HD.
I would encourage those HD centers that don’t have a psychiatrist as part of their faculty to work with psychiatric fellows and residents to establish interest early on. You may need to build your own local expertise since there are not many psychiatrists who work with HD patients. The key is to foster a relationship and demonstrate that you, as neurologists, are willing to work with psychiatrists as a team to treat challenging patients with psychiatric symptoms.
How does the work of your HSG Behavioral Working Group further the goals of acknowledging and treating non-motor symptoms of HD?
As the chair of the working group, my focus is on promoting collaboration with the European Behavioral Working Group to conduct joint projects that benefit the HD clinical and research communities. We are currently developing expert consensus guidelines for evaluation and treatment of behavioral symptoms in end-of-life care. In the past, though, our joint working groups have produced guidelines on treatment of specific psychiatric symptoms in HD. I encourage other psychiatrists and neurologists to participate in this and all our HSG working groups. Our group has made some real inroads into bringing the evidence of behavioral symptoms to the forefront and analyzing behavioral data collected from observational and interventional studies. Working group members are available to review new behavioral rating scales and to provide our behavioral expertise for clinical trials and other research.