Category: Huntington's Disease
Objective: This study aims to identify perceptions of palliative care in Huntington’s Disease (HD), palliative care needs of patients with HD, and at what point patients feel they would benefit from these resources.
Background: Palliative care attempts to improve patient experience by managing symptoms, psychosocial issues and spiritual concerns. [1] It has been shown to impact health related quality of life in many chronic diseases. [2]. Huntington’s disease is a relentlessly progressive neurodegenerative disorder with no current disease modifying therapy. Although the palliative care model has been postulated to be an integral part of HD care, there are gaps in knowledge about specific needs and timing of those needs. [3]
Method: Participants volunteered from a large academic institution patient base to be involved in semi structured interviews that explored patient and caregiver experience surrounding their diagnosis, management of their disease, quality of life, and areas open for improvement. Total functional capacity (TFC) and Unified Huntington’s Disease rating scale (UPHDRS) were obtained from the participant’s chart when able. Qualitative data was coded and analyzed using Atlas.ti software with multiple coders for interrater reliability.
Results: A total of 25 participants were evaluated in the study. The mean age of participants was 52. The percentage of females to males was 60 and 40 respectively. The average TFC and average UPHDRS were 10 and 28. Motor, cognitive and psychiatric symptom complaints were equally identified by participants. Description of social needs focused primarily on access to physical therapy and legal guidance. A small subgroup of patients identified spiritual needs. Overall, participants desired a palliative care model for treatment; with the highest percentage of participants desiring palliative care at the onset of symptoms of HD. Secondary outcomes that were evaluated were access to care, cost of HD specific care and participant experience in the diagnostic process.
Conclusion: Patients with HD and caregivers of patients with HD desire a palliative care model for treatment that would focus on symptom management, access to social resources, physical therapies and spiritual wellbeing. The preferred timing of this intervention would be at the onset of symptoms in their disease course. More studies should be performed to investigate patient outcomes after participating in a palliative care model of treatment for HD.
References: Kluger BM, Shattuck J, Berk J, Sebring K, Jones W, Brunetti F, Fairmont I, Bowles DW, Sillau S, Bekelman DB. Defining Palliative Care Needs in Parkinson’s Disease. Mov Disord Clin Pract. 2018 Nov 16;6(2):125-131. doi: 10.1002/mdc3.12702. PMID: 30838311; PMCID: PMC6384178.
Stein Kaasa, Jon H Loge, Quality-of-life assessment in palliative care. The Lancet Oncology. 2002. 3 (3):Pages 175-182. doi: 10.1016/S1470-2045(02)00682-4.
Tarolli CG, Chesire AM, Biglan KM. Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature. Tremor Other Hyperkinet Mov (N Y). 2017
To cite this abstract in AMA style:
B. Heffernan, L. Seeberger, E. Forbes, J. Shattuck, M. Cook, R. Ayele. Perceptions of Palliative Care in Huntington’s Disease [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/perceptions-of-palliative-care-in-huntingtons-disease/. Accessed July 15, 2025.« Back to 2022 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/perceptions-of-palliative-care-in-huntingtons-disease/