title: Health-related quality of life in caregivers of individuals with traumatic brain injury: development of a conceptual model.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  METHODS
  University hospitals and rehabilitation treatment centers.
  
  
  METHODS
  Caregivers (N=55) of individuals with moderate-to-severe TBI.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  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.
authors.affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI. Electronic address: carlozzi@med.umich.edu.
authors.forename: Noelle E
authors.initials: NE
authors.lastname: Carlozzi
authors.affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI.
authors.forename: Anna L
authors.initials: AL
authors.lastname: Kratz
authors.affiliation: The Institute for Rehabilitation Research Memorial Hermann Research Center, Houston, TX; Baylor College of Medicine, Houston, TX.
authors.forename: Angelle M
authors.initials: AM
authors.lastname: Sander
authors.affiliation: Neuropsychology and Neuroscience Laboratory, Traumatic Brain Injury Laboratory, Kessler Foundation Research Center, West Orange, NJ.
authors.forename: Nancy D
authors.initials: ND
authors.lastname: Chiaravalloti
authors.affiliation: Defense and Veterans Brain Injury Center and Walter Reed National Military Medical Center, Bethesda, MD.
authors.forename: Tracey A
authors.initials: TA
authors.lastname: Brickell
authors.affiliation: Defense and Veterans Brain Injury Center and Walter Reed National Military Medical Center, Bethesda, MD.
authors.forename: Rael T
authors.initials: RT
authors.lastname: Lange
authors.affiliation: Department of Medical Social Sciences, Northwestern University, Chicago, IL.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Hahn
authors.affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI.
authors.forename: Amy
authors.initials: A
authors.lastname: Austin
authors.affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI.
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Miner
authors.affiliation: Department of Physical Therapy, University of Delaware, Newark, DE; Spinal Cord Injury Laboratory, Neuropsychology and Neuroscience Laboratory, Kessler Foundation, West Orange, NJ.
authors.forename: David S
authors.initials: DS
authors.lastname: Tulsky
mesh_terms: D000368:Aged; D001930:Brain Injuries / Q000534:rehabilitation*; D017028:Caregivers / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006117:Grief; D006304:Health Status; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D011788:Quality of Life; D058992:Social Participation; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Brain injuries; Caregivers; Outcome assessment (health care); Quality of life; Rehabilitation