Research Reports - Health-related quality of life in caregivers of individuals with traumatic brain injury
Arch Phys Med Rehabil. 2015 Jan;96(1):105-13
Carlozzi NE(1), Kratz AL(2), Sander AM(3), Chiaravalloti ND(4), Brickell TA(5),
Lange RT(5), Hahn EA(6), Austin A(2), Miner JA(2), Tulsky DS(7)
OBJECTIVES: To identify aspects of health-related quality of life (HRQOL) that
are relevant to caregivers of individuals with traumatic brain injury (TBI) and
to propose an integrated conceptual framework based on this information.
DESIGN: Nine focus groups with caregivers of individuals with moderate-to-severe
TBI were qualitatively analyzed to ascertain the effect that caring for an
individual with a TBI has on caregiver HRQOL.
SETTING: University hospitals and rehabilitation treatment centers.
PARTICIPANTS: Caregivers (N=55) of individuals with moderate-to-severe TBI.
INTERVENTIONS: Not applicable.
MAIN OUTCOME MEASURES: Not applicable.
RESULTS: Qualitative analysis indicated that caregivers were most concerned about
their social health (42% of comments). Other important issues were emotional
health (34%), physical health (11%), cognitive health (3%), and feelings of loss
(9%; feelings of loss related to changes in the future/potential of the care
recipient or related to the caregiver). Areas of concern that were discussed that
were specific to the caregiver and not fully evaluated by existing
patient-reported outcomes (PROs) included feelings of loss, anxiety related to
the caregiver role (reinjury concerns, worry about leaving the person alone,
etc), and caregiver strain (burden, stress, feeling overwhelmed, etc).
CONCLUSIONS: Although existing PROs capture relevant aspects of HRQOL for
caregivers, there are HRQOL domains that are not addressed. A validated and
sensitive HRQOL tool for caregivers of individuals with TBI will facilitate
initiatives to improve outcomes in this underserved group.