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Predictors of informal care burden 1 year after a severe traumatic brain injury: results from the PariS-TBI study
Eleonore Bayen1, Pascale Pradat-Diehl, Claire Jourdan
1AP-HP, Groupe Hospitalier Pitié-Salpêtrière, Service de Médecine Physique et Réadaptation, Paris, France (Drs Bayen and Pradat-Diehl); Université Paris-Dauphine, Laboratoire d'Economie et de Gestion des Organisations de Santé (LEDa-LEGOS), Paris, France (Drs Bayen and Joël); Université Pierre et Marie Curie, UFR de médecine, Paris, France (Drs Bayen and Pradat-Diehl); Université Pierre et Marie Curie, Unité ER 6, Paris, France (Drs Pradat-Diehl, Jourdan and Azouvi); AP-HP, Hôpital R. Poincaré, Service de Médecine Physique et Réadaptation, Garches, France (Drs Jourdan and Azouvi); Université de Versailles St-Quentin, UFR de médecine, 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 Bosserelle, Ms Azerad, and Dr Aegerter); Centre Ressources Francilien du Traumatisme Crânien, Paris, France (Ms Bosserelle, Ms Azerad, and Dr Weiss); and Université de Versailles St-Quentin, UPRES EA 2506, Guyancourt, France (Dr Aegerter).
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 caregiver's burden.
Conclusion:
Global handicap and impairments of executive functions are independent significant predictors of caregiver burden 1 year after TBI.
