For healthcare providers
Managing a multidimensional disease that affects every part of your patients’ lives1,2
With a growing understanding of Huntington’s disease (HD) and a renewed commitment to research, you are empowered to manage your patients’ progressing cognitive, behavioral, and physical symptoms.3
Understanding how HD may affect your patient’s entire family4
Becoming better educated on how HD may affect your patients can empower you to make decisions now, and may help your patients and their loved ones navigate the future.3
Classify and track HD disease progression
See how the classification system may help patients and HCPs to track HD disease progression.3,*
The multidisciplinary care team approach5
HD can affect your patients’ cognition, behavior, and motor function. That’s why, in clinical practice, a multidisciplinary approach is needed to help manage a multitude of symptoms. There are many other ways you can help your patients.1,6
Find HD tools and support
Your patients don’t have to shoulder the impact of HD alone. HD-Now is an educational hub where they can learn more about HD research, available tools, potential clinical trials, and community groups.
*Please note that this classification system is being provided for information purposes only. It is used to stage people with HD for clinical trials only and is not a diagnostic classification system used in clinical practice. Patients should talk to their doctor about HD disease progression.
Supporting the real burden of HD1,2
Your knowledge of the real burden of HD may help your patients—and their families and caregivers—feel heard, supported, and understood.7
Patient Burden
Living with HD may mean your patients are dealing with a range of symptoms that may affect cognition, behavior, and motor control.1,2
Cognitive
- Problems doing daily tasks8
- Memory loss9,10
- Inability to make decisions8
Behavior
- Anger8
Depression11
Moodiness8
Apathy12
Motor control
- Chorea1,13
- Imbalance11
- Immobility1,13
Caregiver Burden
While a family member may be a caregiver, providing care for someone living with HD has its own set of challenges, including4:
Stress
Burnout may cause caregivers to feel mentally, physically, and emotionally exhausted.4
Health issues
Caregivers are used to prioritizing someone else’s health above their own and may even neglect their own needs.4
Lack of support
The demands of caregiving may cause self-isolation and separation from support systems.11
Loss
A young caregiver may give up their childhood, while caregivers of working age might end up sacrificing career advancement.4
Family Burden
HD has the ability to impact the entire family in a variety of ways, such as2,11:
Genetics
A parent with HD has a 50% chance and the added worry of passing the disease to their children.2
Relationship changes
Changes in how your patients think and act may affect how they interact with their family and loved ones.2,4
Financial worries
As your patients’ symptoms progress, they may no longer be able to work, which may create additional financial stress with the loss of income and the cost of full-time care.4,11,14
Ways to help
The burden of HD is real and so are the struggles of your patients.1,2 Here are some ways to consider how to help lessen the burden as you are supporting your patients.
- Proactively manage disease progression and seek out additional specialists to treat symptoms and manage patient function and independence.5
- Make your patients—and their families and caregivers—aware of current medications that may help manage cognitive loss, motor decline, and changes in mood.15
- Listen to the stories your patients—and their families and caregivers—tell you to help identify, track, and monitor HD burden.16
- Consider the Unified Huntington’s Disease Rating Scale to track the clinical and functional progression of HD.16
- Encourage patients and their families and caregivers to plan for worsening symptoms by having palliative care and an end-of-life plan in place.10,11
Resources and tools
Here are some additional resources and tools to consider for your patients to help them connect to HD supporting organizations in the community, learn about clinical trials, and get caregiver tips to help reduce burnout.
References: 1. Glidden AM, Luebbe EA, Elson MJ, et al. Patient-reported impact of symptoms in Huntington disease. Neurology. 2020;94(19):e2045-e2053. doi:10.1212/wnl.0000000000008906. 2. Bates GP, Dorsey R, Gusella JF, et al. Huntington disease. Nat Rev Dis Primers. 2015;1:15005. doi:10.1038/nrdp.2015.5. 3. Tabrizi SJ, Schobel S, Gantman EC, et al. A biological classification of Huntington’s disease: the Integrated Staging System. Lancet Neurol. 2022;21(7):632-644. doi:10.1016/S1474-4422(22)00120-X. 4. Domaradzki J. The impact of Huntington disease on family carers—a literature overview. Psychiatr Pol. 2015;49(5):931-944. doi:10.12740/PP/34496. 5. Mestre T, Shannon K. Huntington disease care: from the past to the present, to the future. Parkinsonism Relat Disord. 2017;44:114-118. doi:10.1016/j.parkreldis.2017.08.009. 6. Johnson EB, Ziegler G, Penny W, et al. Dynamics of cortical degeneration over a decade of Huntington’s disease. Biol Psychiatry. 2021;89(8):807-816. doi:10.1016/j.biopsych.2020.11.009. 7. Skirton H, Williams JK, Barnette JJ, Paulsen JS. Huntington disease: families’ experiences of healthcare services. J Adv Nurs. 2010;66(3):500-510. doi:10.1111/j.1365-2648.2009.05217.x. 8. Gibson JS, Rhoten BA, Ridner SH, Claassen DO. Perceived effects of neuropsychiatric symptoms on functional status in early-stage Huntington disease. West J Nurs Res. 2022;44(2):141-150. doi:10.1177/0193945921992545. 9. Dorsey ER, Beck CA, Darwin K, et al; for the Huntington Study Group COHORT investigators. Natural history of Huntington disease. JAMA Neurol. 2013;70(12):1520-1530. doi:10.1001/jamaneurol.2013.4408. 10. Tabrizi SJ, Scahill RI, Owen G, et al. Predictors of phenotypic progression and disease onset in premanifest and early-stage Huntington’s disease in the TRACK-HD study: analysis of 36-month observational data. Lancet Neurol. 2013;12(7):637-649. doi:10.1016/S1474-4422(13)70088-7. 11. Exuzides A, Matos JE, Patel AM, Martin AA, Ricker B, Bega D. Understanding the burdens associated with Huntington’s disease in manifest patients and care partners–comparing to Parkinson’s disease and the general population. Brain Sci.2022;12(2):161. doi:10.3390/brainsci12020161. 12. McCusker E, Loy CT. The many facets of unawareness in Huntington disease. Tremor Other Hyperkinet Mov (N Y). 2014;4:257. doi:10.7916/D8FJ2FD3. 13. Tabrizi SJ, Scahill RI, Durr A, et al. Biological and clinical changes in premanifest and early stage Huntington’s disease in the TRACK-HD study: the 12-month longitudinal analysis. Lancet Neurol. 2011;10(1):31-42. doi:10.1016/S1474-4422(10)70276-3. 14. Shaw E, Mayer M, Ekwaru P, et al. Epidemiology and economic burden of Huntington’s disease: a Canadian provincial public health system perspective. J Med Econ. 2022;25(1):212-219. doi:10.1080/13696998.2022.2033493. 15. 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 Huntington Dis. 2016;5(4):395-403. doi:10.3233/jhd-160228. 16. Winder JY, Achterberg WP, Marinus J, Gardiner SL, Roos RAC. Assessment scales for patients with advanced Huntington’s disease: comparison of the UHDRS and UHDRS-FAP. Mov Disord Clin Pract. 2018;5(5):527-533. doi:10.1002/mdc3.12646. 17. Rare disease database. National Organization for Rare Disorders website. https://rarediseases.org/rare-diseases/huntingtons-disease/. Accessed December 6, 2022.