The burden of Huntington's disease: A prospective longitudinal study of patient/caregiver pairs. (October 2022)

• Record Type: Journal Article
• Authors: Youssov, Katia; Audureau, Etienne; Vandendriessche, Henri; Morgado, Graca; Layese, Richard; Goizet, Cyril; Verny, Christophe; Bourhis, Marie-Laure; Bachoud-Lévi, Anne-Catherine
• Is Part Of: Parkinsonism & related disorders. Volume 103(2022)
• Page Start: 77
• Page End: 84
• Publication Date: 2022-10
• Subjects: Huntington's disease -- Disease burden -- Longitudinal study; Parkinson's disease -- Periodicals; Movement disorders -- Periodicals; Movement Disorders -- Periodicals; Nerve Degeneration -- Periodicals; Nervous System Diseases -- Periodicals; Parkinson Disease -- Periodicals; Tremor -- Periodicals; Parkinson, Maladie de -- Périodiques; Parkinson's disease; 616.833
• DOI: 10.1016/j.parkreldis.2022.08.023
• Languages: English
• ISSNs: 1353-8020

Abstract

Abstract: Background: Caregiver burden is widely recognized in Huntington's disease, but little is known about the factors determining its evolution over time in the absence of longitudinal studies. Our objective was to identify typical patterns of caregiver burden level and evolution using both patients' and caregivers' characteristics over a one-year period to identify potential levers for alleviation. Methods: We conducted a prospective multicenter longitudinal study in caregiver/patient pairs in Huntington's disease (NCT02876445) between March 2011 and May 2015. Caregiver data were derived from two questionnaires at one-year interval on perceived burden (Zarit Burden Interview), social environment and support. Caregiver data were linked to clinical and demographic data from patients included in the Biomarker study (NCT01590589). Unsupervised clustering analysis was performed using self-organizing maps. Results: 105 caregiver/patient pairs were included in the analysis. We identified four clusters. Of the two clusters of patients with advanced disease, cluster A was characterized by high levels of irritability and obsessive-compulsive behaviors, with high and increasing burden (N = 30; 29%), cluster B, the more apathetic group, with low and decreasing burden (N = 22; 21%). Clusters C (N = 27; 26%) and D (N = 26; 25%) were composed of patients in earlier stages, associated with a stable burden in group C but a notably increasing one in group D driven by patients' depression scores increase. Conclusions: Our results revealed the dynamics of caregiver burden over time in Huntington's disease, combining the stage of the disease, the severity of the patients' decline, psychiatric and behavioral disorders, and their evolution over time. Highlights: Caregiver burden over time in Huntington disease must be considered to improve care. Determinants of the evolution of caregiver burden are not limited to the stage of patients' disease. Patients' stage, psychiatric disorders, and disease's dynamics condition burden. Irritability, obsessions, and depression are major factors in caregiver burden. Entry into the disease causes burden increase for caregivers.