Noelle E Carlozzi1, Anna L Kratz2, Angelle M Sander3, Nancy D Chiaravalloti4, Tracey A Brickell5, Rael T Lange5, Elizabeth A Hahn6, Amy Austin2, Jennifer A Miner2, David S Tulsky7. 1. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI. Electronic address: carlozzi@med.umich.edu. 2. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI. 3. The Institute for Rehabilitation Research Memorial Hermann Research Center, Houston, TX; Baylor College of Medicine, Houston, TX. 4. Neuropsychology and Neuroscience Laboratory, Traumatic Brain Injury Laboratory, Kessler Foundation Research Center, West Orange, NJ. 5. Defense and Veterans Brain Injury Center and Walter Reed National Military Medical Center, Bethesda, MD. 6. Department of Medical Social Sciences, Northwestern University, Chicago, IL. 7. Department of Physical Therapy, University of Delaware, Newark, DE; Spinal Cord Injury Laboratory, Neuropsychology and Neuroscience Laboratory, Kessler Foundation, West Orange, NJ.
Abstract
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.
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.
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Authors: Noelle E Carlozzi; Michael A Kallen; Phillip A Ianni; Angelle M Sander; Elizabeth A Hahn; Rael T Lange; Tracey A Brickell; Louis M French; Jennifer A Miner; Robin Hanks Journal: Arch Phys Med Rehabil Date: 2018-06-26 Impact factor: 3.966
Authors: Eva Keatley; Robin Hanks; Angelle M Sander; Anna L Kratz; David S Tulsky; Phillip Ianni; Jennifer Miner; Noelle E Carlozzi Journal: Arch Phys Med Rehabil Date: 2018-12-08 Impact factor: 3.966
Authors: Noelle E Carlozzi; Tracey A Brickell; Louis M French; Angelle Sander; Anna L Kratz; David S Tulsky; Nancy D Chiaravalloti; Elizabeth A Hahn; Michael Kallen; Amy M Austin; Jennifer A Miner; Rael T Lange Journal: J Rehabil Res Dev Date: 2016
Authors: Noelle E Carlozzi; Michael A Kallen; Robin Hanks; Elizabeth A Hahn; Tracey A Brickell; Rael T Lange; Louis M French; Anna L Kratz; David S Tulsky; David Cella; Jennifer A Miner; Phillip A Ianni; Angelle M Sander Journal: Arch Phys Med Rehabil Date: 2018-09-07 Impact factor: 3.966
Authors: Noelle E Carlozzi; Rael T Lange; Nicholas R Boileau; Michael A Kallen; Angelle M Sander; Robin A Hanks; Risa Nakase-Richardson; David S Tulsky; Jill P Massengale; Louis M French; Tracey A Brickell Journal: Rehabil Psychol Date: 2019-12-16
Authors: Noelle E Carlozzi; Carey W Sherman; Kaley Angers; Mitchell P Belanger; Amy M Austin; Kelly A Ryan Journal: Aging Ment Health Date: 2017-07-12 Impact factor: 3.658
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
Authors: Noelle E Carlozzi; Phillip A Ianni; Rael T Lange; Tracey A Brickell; Michael A Kallen; Elizabeth A Hahn; Louis M French; David Cella; Jennifer A Miner; David S Tulsky Journal: Arch Phys Med Rehabil Date: 2018-07-31 Impact factor: 3.966