title: Objective and Subjective Burden of Informal Caregivers 4 Years After a Severe Traumatic Brain Injury: Results From the PariS-TBI Study.
abstract: Prospective assessment of informal caregiver (IC) burden 4 years after the traumatic brain injury of a relative.
  
  
  
  Longitudinal cohort study (metropolitan Paris, France).
  
  
  
  Home dwelling adults (N = 98) with initially severe traumatic brain injury and their primary ICs.
  
  
  
  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).
  
  
  
  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 = &OV0556;17 per hour to be replaced instead of being paid for providing care themselves (Willingness-to-accept = &OV0556;12).
  
  
  
  Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.
authors.affiliation: 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).
authors.forename: Eléonore
authors.initials: E
authors.lastname: Bayen
authors.forename: Claire
authors.initials: C
authors.lastname: Jourdan
authors.forename: Idir
authors.initials: I
authors.lastname: Ghout
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Darnoux
authors.forename: Sylvie
authors.initials: S
authors.lastname: Azerad
authors.forename: Claire
authors.initials: C
authors.lastname: Vallat-Azouvi
authors.forename: Jean-Jacques
authors.initials: JJ
authors.lastname: Weiss
authors.forename: Philippe
authors.initials: P
authors.lastname: Aegerter
authors.forename: Pascale
authors.initials: P
authors.lastname: Pradat-Diehl
authors.forename: Marie-Eve
authors.initials: ME
authors.lastname: Joël
authors.forename: Philippe
authors.initials: P
authors.lastname: Azouvi
mesh_terms: D000328:Adult; D000070642:Brain Injuries, Traumatic / Q000451:nursing*; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D005602:France; D023261:Glasgow Outcome Scale; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D015999:Multivariate Analysis; D011446:Prospective Studies