Marie-Eve Joël

Predictors of Informal Care Burden 1 Year After a Severe Traumatic Brain Injury: Results From the Paris-tbi study

Objective:To investigate predictors of informal care burden 1 year after a severe traumatic brain injury (TBI). Participants:Patients (N = 66) aged 15 years or older with severe TBI (Glasgow Coma Scale score of 8 or less) and their primary informal caregivers. Setting:Multicenter inception cohort study over 22 months in Paris and the surrounding area (PariS-TBI study). Main measures:Patients’ preinjury characteristics; injury severity data; outcome measures at discharge from intensive care and 1 year after the injury; Dysexecutive Questionnaire; Medical Outcome Study Short Form-36; Zarit Burden Inventory. Results:Among the 257 survivors at discharge from acute care, 66 patient-caregiver couples were included. Primary informal caregivers were predominantly women (73%), of middle age (age, 50 years), supporting male patients (79%), of mean age of 38 years. The majority (56%) of caregivers experienced significant burden, and 44% were at risk of depression. Caregivers’ impaired health status and perceived burden significantly correlated with patients’ global disability (as assessed with the Glasgow Outcome Scale-Extended) and impairments of executive functions (as assessed with the Dysexecutive Questionnaire). A focused principal component analysis suggested that disability and executive dysfunctions were independent predictors of perceived burden, whereas demographics, injury severity, and Glasgow Outcome Scale at discharge from acute care did not significantly correlate with caregivers burden. Conclusion:Global handicap and impairments of executive functions are independent significant predictors of caregiver burden 1 year after TBI.

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

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.

Consensus sur la démence de type Alzheimer au stade sévère

Resume Sous l’egide de la Societe Francaise de Geriatrie et Gerontologie, un groupe pluridisciplinaire de specialistes en geriatrie, neurologie, epidemiologie, psychiatrie, neuroradiologie, pharmacologie, sante publique a entrepris une demarche de consensus sur les modalites d’evaluation, de suivi et de prise en charge globale de la demence de type Alzheimer au stade severe. Cette reflexion, fondee sur l’etat des connaissances en 2005, a permis de formuler 21 recommandations a destination des praticiens hospitaliers, medecins traitants, medecins coordonnateurs et specialistes. Quel que soit le stade evolutif de la maladie, l’objectif de la prise en charge est d’ameliorer la qualite de vie de la personne malade et de sa famille, en associant projet de soins et projet de vie et ce jusqu’en fin de vie. La prise en charge, pour etre globale, doit etre necessairement pluridisciplinaire et coordonnee, en mobilisant les ressources sanitaires et medico-sociales de proximite pour optimiser leur utilisation. Le groupe a souligne egalement l’importance d’une recherche dynamique : recherche clinique visant a mieux connaitre l’evolution des troubles, evaluation des strategies de prise en soins.