Health-related quality of life in caregivers of individuals with traumatic brain injury

Short Title:
Health-related quality of life in caregivers of individuals with traumatic brain injury
Model System:
Reference Type:
Journal Article
Accession No.:
Archives of Physical Medicine and Rehabilitation
Year, Volume, Issue, Page(s):
2015, vol. 1, issue 95, pp e100
Publication Website:
Study identified aspects of health-related quality of life (HRQOL) that are relevant to caregivers of individuals with traumatic brain injury (TBI) and developed an integrated conceptual framework based on this information. Nine focus groups were conducted with 55 caregivers of individuals with moderate-to-severe TBI to explore the effect that caring for an individual with a TBI has on caregiver HRQOL. Qualitative analysis of the data collected indicated that caregivers were most concerned about their social health (42 percent of comments). Other important issues were emotional health (34 percent), physical health (11 percent), cognitive health (3 percent), and feelings of loss related to changes in the future/potential of the care recipient or related to the caregiver (9 percent). 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.). The findings suggest that 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.
Tulsky, D. Kisala, P. Victorson,D. Tate, D. Heinemann, A. Charlifue, S. Kirshblum, S. Fyffe, D. Gershon, R. Spungen, A. Bombardier, C. Dyson-Hudson, T. Amtmann, D. Kalpakjian, C. Choi, S. Jette, A. Forcheimer, M. Cella, D.
Author Address(es):

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