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Objective and Subjective Burden of Informal Caregivers 4 Years After a Severe Traumatic Brain Injury: Results From the PariS-TBI Study

Bayen, Eléonore MD; Jourdan, Claire MD; Ghout, Idir MS; Darnoux, Emmanuelle MS; Azerad, Sylvie PharmD; Vallat-Azouvi, Claire PhD; Weiss, Jean-Jacques MD; Aegerter, Philippe MD, PhD; Pradat-Diehl, Pascale MD, PhD; Joël, Marie-Eve PhD; Azouvi, Philippe MD, PhD

Section Editor(s): Caplan, Bruce PhD, ABPP; Bogner, Jennifer PhD, ABPP; Brenner, Lisa PhD, ABPP; Arciniegas, David MD

Journal of Head Trauma Rehabilitation: September/October 2016 - Volume 31 - Issue 5 - p E59–E67
doi: 10.1097/HTR.0000000000000079
Focus on Clinical Research and Practice, Part 4

Objective: Prospective assessment of informal caregiver (IC) burden 4 years after the traumatic brain injury of a relative.

Setting: Longitudinal cohort study (metropolitan Paris, France).

Participants: Home dwelling adults (N = 98) with initially severe traumatic brain injury and their primary ICs.

Main Outcome Measures: Informal caregiver objective burden (Resource Utilization in Dementia measuring Informal Care Time [ICT]), subjective burden (Zarit Burden Inventory), monetary self-valuation of ICT (Willingness-to-pay, Willingness-to-accept).

Results: Informal caregivers were women (81%) assisting men (80%) of mean age of 37 years. Fifty-five ICs reported no objective burden (ICT = 0) and no/low subjective burden (average Zarit Burden Inventory = 12.1). Forty-three ICs reported a major objective burden (average ICT = 5.6 h/d) and a moderate/severe subjective burden (average Zarit Burden Inventory = 30.3). In multivariate analyses, higher objective burden was associated with poorer Glasgow Outcome Scale-Extended scores, with more severe cognitive disorders (Neurobehavioral Rating Scale-revised) and with no coresidency status; higher subjective burden was associated with poorer Glasgow Outcome Scale-Extended scores, more Neurobehavioral Rating Scale-revised disorders, drug-alcohol abuse, and involvement in litigation. Economic valuation showed that on average, ICs did not value their ICT as free and preferred to pay a mean Willingness-to-pay = €17 per hour to be replaced instead of being paid for providing care themselves (Willingness-to-accept = €12).

Conclusion: Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.

AP-HP, Groupe Hospitalier Pitié-Salpêtrière, Service de Médecine Physique et Réadaptation, Paris, France (Drs Bayen and Pradat-Diehl); Université Paris-Dauphine, LEDa-LEGOS Laboratoire d'Economie et de Gestion des Organisations de Santé, Paris, France (Drs Bayen and Joël); Université Pierre et Marie Curie, ER 6, Paris, France (Drs Pradat-Diehl and Vallat-Azouvi); AP-HP, Hôpital R. Poincaré, Service de Médecine Physique et Réadaptation, Garches, France (Drs Jourdan, Vallat-Azouvi, and Azouvi); Université de Versailles St-Quentin, EA 4497, Guyancourt, France (Drs Jourdan and Azouvi); AP-HP, Hôpital A. Paré, Unité de Recherche Clinique Paris-Ouest, Boulogne-Billancourt, France (Mr Ghout, Ms Azerad, and Dr Aegerter); Université de Versailles St-Quentin, UPRES EA 2506, Guyancourt, France (Dr Aegerter); and Centre Ressources Francilien du Traumatisme Crânien, Paris, France (Ms Darnoux and Dr Weiss).

Corresponding Author: Eleonore Bayen, MD, Antenne UEROS-UGECAMIF, Service de Médecine Physique et de Réadaptation, Hôpital Pitié-Salpêtrière, 47 Boulevard de l'Hôpital, 75013 Paris, France (

This constitution of the cohort was funded by a grant from the French Ministry of Health (Programme Hospitalier de Recherche Clinique 2004, AOM-04-084) and sponsored by AP-HP (Département de la Recherche Clinique et du Développement). The 4-year follow-up of this study was funded by a grant from the Institut de Recherche en Santé Publique (IReSP).

The authors thank all members of the CRFTC Steering Committee (Centre Ressource Francilien des Traumatisés Crâniens) for their valuable help. Additional support was obtained from the Caisse Nationale de Solidarité pour l'Autonomie (CNSA), the Société Française de Médecine Physique et de Réadaptation (SOFMER), the Fondation des “Gueules Cassées,” and the Institut du Cerveau et de la Moëlle Epinière (IHU-A-ICM).

The authors declare no conflicts of interest.

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