Eléonore Bayen1, Claire Jourdan, Idir Ghout, Emmanuelle Darnoux, Sylvie Azerad, Claire Vallat-Azouvi, Jean-Jacques Weiss, Philippe Aegerter, Pascale Pradat-Diehl, Marie-Eve Joël, Philippe Azouvi. 1. 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).
Abstract
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 = &OV0556;17 per hour to be replaced instead of being paid for providing care themselves (Willingness-to-accept = &OV0556;12). CONCLUSION: Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.
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 = &OV0556;17 per hour to be replaced instead of being paid for providing care themselves (Willingness-to-accept = &OV0556;12). CONCLUSION: Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.
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Authors: Noelle E Carlozzi; Michael A Kallen; Robin Hanks; Anna L Kratz; Elizabeth A Hahn; Tracey A Brickell; Rael T Lange; Louis M French; Phillip A Ianni; Jennifer A Miner; Angelle M Sander Journal: Arch Phys Med Rehabil Date: 2018-07-31 Impact factor: 3.966
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Authors: Noelle E Carlozzi; Phillip A Ianni; David S Tulsky; Tracey A Brickell; Rael T Lange; Louis M French; David Cella; Michael A Kallen; Jennifer A Miner; Anna L Kratz Journal: Arch Phys Med Rehabil Date: 2018-06-20 Impact factor: 3.966
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