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

Humans Caregivers / psychology Huntington Disease Cost of Illness Prospective Studies Longitudinal Studies
Disease burden Huntington's disease Longitudinal study

Journal

Parkinsonism & related disorders
ISSN: 1873-5126
Titre abrégé: Parkinsonism Relat Disord
Pays: England
ID NLM: 9513583

Informations de publication

Date de publication:
10 2022
Historique:
received: 22 06 2022
revised: 12 08 2022
accepted: 19 08 2022
pubmed: 10 9 2022
medline: 26 10 2022
entrez: 9 9 2022
Statut: ppublish

Résumé

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. 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. 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. 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.

Sections du résumé

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.

Identifiants

DOI: 10.1016/j.parkreldis.2022.08.023 PMID: 36084356
pubmed: 36084356
pii: S1353-8020(22)00280-2
doi: 10.1016/j.parkreldis.2022.08.023
pii:
doi:

Banques de données

ClinicalTrials.gov
['NCT02876445', 'NCT01590589']

Types de publication

Multicenter Study Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

77-84

Informations de copyright

Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.

Déclaration de conflit d'intérêts

Declaration of competing interests No conflict of interest.

Auteurs

Katia Youssov (K)

Département d'Études Cognitives, École normale supérieure, PSL University, 75005, Paris, France; Université Paris-Est Créteil, Faculté de médecine, 94000, Créteil, France; Inserm U955, Institut Mondor de Recherche Biomédicale, Équipe E01 NeuroPsychologie Interventionnelle, 94000, Créteil, France; Assistance Publique Hôpitaux de Paris (AP-HP), Centre de référence Maladie de Huntington, Service de Neurologie, Hôpital Henri Mondor-Albert Chenevier, 94000, Créteil, France.

Etienne Audureau (E)

Université Paris-Est Créteil, Faculté de médecine, 94000, Créteil, France; Assistance Publique Hôpitaux de Paris (AP-HP), Unité de Recherche Clinique (URC Mondor), Service de Santé Publique, Hôpital Henri Mondor-Albert Chenevier, 94000, Créteil, France; Inserm U955, Institut Mondor de Recherche Biomédicale, CEpiA (Clinical Epidemiology and Ageing) Team, France.

Henri Vandendriessche (H)

Département d'Études Cognitives, École normale supérieure, PSL University, 75005, Paris, France; Université Paris-Est Créteil, Faculté de médecine, 94000, Créteil, France; Inserm U955, Institut Mondor de Recherche Biomédicale, Équipe E01 NeuroPsychologie Interventionnelle, 94000, Créteil, France.

Graca Morgado (G)

Inserm, Centre d'Investigation Clinique 1430, AP-HP, Hôpital Henri Mondor, Créteil, France.

Richard Layese (R)

Assistance Publique Hôpitaux de Paris (AP-HP), Unité de Recherche Clinique (URC Mondor), Service de Santé Publique, Hôpital Henri Mondor-Albert Chenevier, 94000, Créteil, France.

Cyril Goizet (C)

Centre de Reference Maladies Rares « Neurogénétique », Centre de compétence Maladies Rares « Maladie de Huntington », Service de Génétique Médicale, CHU Bordeaux and Univ. Bordeaux, Equipe « Neurogénétique Translationnelle - NRGEN », INCIA CNRS UMR5287 Université Bordeaux, Bordeaux, France.

Christophe Verny (C)

Service de Neurologie, Centre de référence Huntington, Laboratoire Mitolab UMR CNRS 6015 - Inserm 1083, 49933, CHU d'ANGERS, France.

Marie-Laure Bourhis (ML)

Inserm, Centre d'Investigation Clinique 1430, AP-HP, Hôpital Henri Mondor, Créteil, France; Inserm U955, Institut Mondor de Recherche Biomédicale, CEpiA (Clinical Epidemiology and Ageing) Team, France.

Anne-Catherine Bachoud-Lévi (AC)

Département d'Études Cognitives, École normale supérieure, PSL University, 75005, Paris, France; Université Paris-Est Créteil, Faculté de médecine, 94000, Créteil, France; Inserm U955, Institut Mondor de Recherche Biomédicale, Équipe E01 NeuroPsychologie Interventionnelle, 94000, Créteil, France; Assistance Publique Hôpitaux de Paris (AP-HP), Centre de référence Maladie de Huntington, Service de Neurologie, Hôpital Henri Mondor-Albert Chenevier, 94000, Créteil, France. Electronic address: anne-catherine.bachoud-levi@aphp.fr.

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Classifications MeSH

questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › The burden of Huntington's disease: A...
questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Personnel de santé › Aidants › The burden of Huntington's disease: A...
questionsmedicales.fr › Troubles mentaux › Troubles neurocognitifs › Démence › Maladie de Huntington › The burden of Huntington's disease: A...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Enquêtes de santé › Indicateurs d'état de santé › Coûts indirects de la maladie › The burden of Huntington's disease: A...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Caractéristiques des études épidémiologiques › Études épidémiologiques › Études de cohortes › Études prospectives › The burden of Huntington's disease: A...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Caractéristiques des études épidémiologiques › Études épidémiologiques › Études de cohortes › Études longitudinales › The burden of Huntington's disease: A...