Huntington’s disease (HD) chorea progressively limits patients’ lives1
Treating HD chorea early can help make a difference2,3
According to a real-world study, HD patients with chorea required self-care and mobility assistance across many areas of daily life, including4:
Getting dressed/
washed
Shopping
Use of a cane/
walking stick
Mobility support from friends and family
99% of patients with HD chorea required assistance with self-care activities4
In a survey conducted by the Huntington’s Disease Society of America (HDSA), care partners cited chorea as the most impactful symptom of HD5
Most patients and care partners state that it is “very important” to manage chorea; their concerns include loss of independence, unpredictability/uncontrollability, and impact on family life.2,3
No clinical trials have been conducted to demonstrate that treating HD chorea affects the outcomes listed above.
Management of chorea may be met with many challenges
There are a limited number of FDA-approved treatment options available for HD chorea.6,7
Limitations of tolerability6,7
- Medications may have dose-limiting side effects
- Treatment of chorea should be determined individually as a balance of chorea reduction and
medication tolerability
Severity of chorea7
- Chorea severity may vary over the course of the disease
Prevalence of depression and suicidality in HD
- The lifetime prevalence of major depression in people with HD is about 40%8
- Suicide rates range from approximately 5% to 13%9
- 25% of patients attempt suicide10
Concomitant medications8
- Some prescription medications may worsen voluntary motor control
Watch as Eileen discusses how HD chorea has impacted her life, and in particular, her work
For more videos, visit the YouTube page.
For more videos, visit the YouTube page.
Onscreen text:
A patient talks about how she had to stop work as a legal secretary due to her Huntington’s disease.
Eileen:
Well, it affected me and my working.
I’m not working anymore, I’m on disability, and I, uh…
It’s…’cause I can’t read as much, like I used to read. Um…
Rajeev Kumar:
What kind of work did you used to do?
Eileen:
I was a legal secretary.
Rajeev Kumar:
And how did it interfere with reading and doing your job?
Eileen:
It interfered with my reading pleadings and emails, um.
I can’t comprehend reading anymore. And I’ve been reading my whole life.
Um, I don’t read books like I used to.
In fact, I don’t read them at all.
And it has affected me in ways of eating.
I drop my food, I drop…I fall over. I fall on occasion.
REFERENCES: 1. Roos RAC. Huntington’s disease: a clinical review. Orphanet J Rare Dis. 2010;5:40. 2. Beglinger LJ, O’Rourke JJ, Wang C, Langbehn DR, Duff K, Paulsen JS; Huntington Study Group Investigators. Earliest functional declines in Huntington disease. Psychiatry Res. 2010;178(2):414-418. 3. Thorley EM, Iyer RG, Wicks P, et al. Understanding how chorea affects health-related quality of life in Huntington disease: an online survey of patients and caregivers in the United States. Patient. 2018;11(5):547-559. 4. Claassen DO, DeCourcy J, Mellor J, Johnston C, Iyer RG. Impact of chorea on self-care activity, employment, and health-care resource use in patients with Huntington’s disease. J Health Econ Outcomes Res. 2021;8(1):99-105. 5. Simpson JA, Lovecky D, Kogan J, Vetter LA, Yohrling GJ. Survey of the Huntington’s disease patient and caregiver community reveals most impactful symptoms and treatment needs. J Huntingtons Dis. 2016;5(4):395-403. 6. AUSTEDO® XR (deutetrabenazine) extended-release tablets and AUSTEDO® current Prescribing Information. Parsippany, NJ: Teva Neuroscience, Inc. 7. Burgess JC, Davis B, Fogarty E, et al. Caregiver guide for mid to late stage Huntington’s disease: for long-term care facilities and in-home care agencies. Huntington’s Disease Society of America; 2014. 8. Nance M, Paulsen JS, Rosenblatt A, Wheelock V. A Physician’s Guide to the Management of Huntington’s Disease. 3rd ed. Huntington’s Disease Society of America; 2011. 9. Wetzel HH, Gehl CR, Dellefave L, Schiffman JF, Shannon KM, Paulsen JS; Huntington Study Group. Suicidal ideation in Huntington disease: the role of comorbidity. Psychiatry Res. 2011;188(3):372-376. 10. Killoran A, Biglan KM. Current therapeutic options for Huntington’s disease: good clinical practice versus evidence-based approaches? Mov Disord. 2014;29(11):1404-1413. 11. Data on file. Parsippany, NJ: Teva Neuroscience, Inc.