Panel group

Huntington’s Disease - Disease awareness

20 MIN

Interdisciplinary care in Huntington’s disease

Huntington's disease (HD) is characterized by a myriad of motor, cognitive, and behavioral symptoms, which get worse over time.1–3 Disease progression, coupled with the inherited nature of HD, has a profound impact on both people with HD and their caregivers.4,5 The varied symptoms of HD require a tailored and interdisciplinary approach to management.2,3,6,7 Social workers, physiotherapists and psychiatrists shared their perspectives on interdisciplinary care in HD during three virtual panel meetings.

The role of a social worker in caring for people with HD and their families

People with HD increasingly rely on family and caregivers for support as motor symptoms significantly impact daily functioning.4,7,8  In moderate to advanced stages of HD, people's symptoms interfere with their ability to engage in activities such as driving and working.5,9 On average, family caregivers spend 43 hours each week in a caregiving role.10 Patients with HD may lack insight into their own impairment, meaning it is necessary for social workers to gather information from family caregivers and other members of the interdisciplinary team.11

During this panel discussion, four social workers discussed the importance of early integration into the interdisciplinary team to address the needs of both the person with HD and their family. They emphasized their role in recognizing and overcoming barriers to care, including mental and emotional issues, safety concerns, employment, and education. They also highlighted their position as an advocate for the person and family, based on strong relationships built through regular contact. The insights gathered by social workers can be passed to the primary care physician to inform treatment plans. 

It is really important for providers to understand that the sooner we can integrate the better.

Lisa Mooney, Licensed Clinical Social Worker (UC David Health, CA, USA)

Hear more from social workers involved in HD management

The role of a physical therapist in caring for people with HD

At least 50% of people have motor symptoms at clinical onset, including chorea, bradykinesia, incoordination, and rigidity.2,12 Physical therapy can relieve some of these symptoms and their associated burden. For example, aerobic exercise can improve fitness and motor function, and supervised gait training can improve gait.13

Four physical therapists discussed the timing and extent of their involvement in managing motor symptoms. The group highlighted the variable nature of HD, as the people they treat range from symptomless to severely affected. One physical therapist explained their role is to both monitor changes and predict what may happen in the future. People with HD often have family members with the disease and can anticipate issues with balance or gait. However, the physical therapists noted that each person with HD is unique and there are various interventions that can help. A key theme of the discussion was ensuring physical therapists are involved with people in early stages of HD so they can initiate exercises to maintain mobility and put measures in place for future disease progression. 

It is amazing how some people have been able to maintain their ability throughout all the stages [of HD] because of their willingness to follow some of our directions.

Anne Kloos, PhD, Physical Therapist and Neurologic Clinical Specialist (The Ohio State University, OH, USA)

Watch physical therapists discuss their role in managing HD

The role of a psychiatrist in caring for people with HD and their families

Up to 76% of people with HD experience psychiatric disorders, most frequently depression or depressive symptoms.14 Studies have found that depressive symptoms are often present before motor symptoms and may correlate with cognitive decline. 14 In addition to supporting symptomatic people, psychiatrists may be involved in genetic testing for HD and discussing the consequences for the person, family members, and future generations.15

The psychiatrists on this panel had experience in both outpatient and inpatient care. In the same way as the social workers and physical therapists, they emphasized the need to be involved in interdisciplinary care of people with HD and their families as early as possible. They added that psychiatrists often have responsibility for continuity of care and can take on multiple roles, including supporting people through genetic testing and prior to the development of motor symptoms. The psychiatrist who works in a long-term care setting highlighted that she becomes involved as soon as a person with HD is admitted; the primary care physician does not have time to manage motor, cognitive, and behavioral symptoms. Another psychiatrist noted that the problems associated with HD are so complex that no single person or clinician should manage them alone. 

I think a well-trained mental health professional is a critical part of the genetic testing process.

Mary Edmondson, MD (HD Reach, NC, USA)

Learn more about the role of psychiatrists in HD 

References

  1. Roos RAC. Huntington’s disease: a clinical review. Orphanet J Rare Dis 2010;5:40.

  2. Bates GP, Dorsey R, Gusella JF, et al. Huntington’s disease. Nat Rev Dis Primers 2015;1:15005. 

  3. McColgan P, Tabrizi SJ. Huntington’s disease: a clinical review. Eur J Neurol 2018;25:24–34.

  4. Domaradzki J. The impact of Huntington disease on family carers – a literature overview. Psychiatr Pol 2015;49:931–944.

  5. Simpson JA, Lovecky D, Kogan J, et al. Survey of the Huntington’s disease patient and caregiver community reveals most impactful symptoms and treatment needs. J Huntingtons Dis 2016;5:395–403.

  6. Dash D, Mestre TA. Therapeutic update on Huntington’s disease: symptomatic treatments and emerging disease-modifying therapies. Neurotherapeutics 2020;17:1645–1659.

  7. van Walsem MR, Howe EI, Iversen K, et al. Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional population-based study. Orphanet J Rare Dis 2015;10:124.

  8. Hocaoglu MB, Gaffan EA. Health-related quality of life in Huntington’s disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington’s disease health-related quality of life questionnaire (HDQoL). J Neurol 2012;259:1793–1800.

  9. Ko J, Lu X, Exuzides A, et al. Burden of Huntington’s disease (HD) on loss of employment status and its association with disease stage. Presented at MDS 2020; Abstract 252.

  10. Yu M, Tan K, Koloms K, Bega D. Assessment of caregiver burden in Huntington’s disease. J Huntingtons Dis 2019;8:111–114.

  11. Huntington’s Disease Association. Huntington’s disease: A guide for social workers. January 2020. Available at: https://www.hda.org.uk/media/2645/social-worker-guide.pdf (accessed October 2021).

  12. Orth M, Bronzova J, Tritsch C, et al. Comparison of Huntington’s disease in Europe and North America. Mov Disord Clin Pract 2017;4:358–367.

  13. Quinn L, Kegelmeyer D, Kloos A, et al. Clinical recommendations to guide physical therapy practice for Huntington disease. Neurology 2020;94:217–228.

  14. Paoli RA, Botturi A, Ciammola A, et al. Neuropsychiatric burden in Huntington’s disease. Brain Sci 2017;7:67.

  15. MacLeod R, Tibben A, Frontali M, et al. Recommendations for the predictive genetic test in Huntington’s disease. Clin Genet 2013:83:221–231.