Caregivers of individuals with traumatic brain injury (TBI) undergo considerable stress that can negatively impact their health-related quality of life (HRQOL), a multidimensional construct reflecting the impact of a disease, disability, or its treatment, on mental, physical, and social well-being. Negative sequelae for caregivers of individuals with TBI include depression and anxiety, disruption of family systems, decreased marital satisfaction and longevity, social isolation, increased need for mental health services, and increased use of alcohol and other drugs. In addition, caregiver stress is related to poorer outcomes for the patients themselves.
Our understanding of the experience of caregivers of individuals with TBI is greatly limited by the fact that there are no measures of HRQOL that are specific to caregivers of civilian-TBI or military-TBI. Researchers and clinicians have had to resort to utilizing HRQOL measures that are either overly generic, lacking the sensitivity needed to detect meaningful differences in specific interventions and the course of recovery following TBI, or the measures are too narrow in focus and only reflect a single domain of functioning (e.g., physical functioning). The answer to this problem is evident in the example set by several federal initiatives to develop meaningful patient reported outcomes (PROs) measures of HRQOL in other populations. For example, the National Institutes of Health (NIH) has made a significant investment to improve PROs through the Patient Reported Outcomes Measurement Information System PROMIS (developed for use in chronic disease). PROMIS and other PROs initiatives are designed to be complementary measurement systems that allow for scores on one measure to be estimated on another by the inclusion of common items on both measures. These “common data elements” are gaining influence in current clinical and research practice. Despite the expansive scope of this innovative work, NONE of these initiatives has examined HRQOL in caregivers.
As noted above, while there is clear evidence for negative outcomes for caregivers and the patients they care for, caregivers remain a significantly underserved population. Although some work has been conducted with caregivers of individuals with TBI, these individuals are often overlooked due to the immediate treatment needs of the individual with the TBI. To help to remedy this problem, we are proposing a special issue that includes several high-quality manuscripts that highlight the impact that caring for an individual with either a civilian- or military-related TBI has on HRQOL. Specifically, this special issue will include manuscripts clustered around two HRQOL themes: 1) the development of several new measures of HRQOL that are specific to the most important HRQOL concerns reported among these caregivers; and 2) Understanding HRQOL in this population more broadly, including manuscripts that are focused on clinical questions as they relate to HRQOL and other aspects of functioning for these caregivers, as well as several brief manuscripts establishing reliability and validity data for existing HRQOL measures in these caregivers. It is our hope that a better understanding of HRQOL in caregivers of individuals with TBI (as provided in this special issue) will provide valuable insight in developing and evaluating clinical interventions aimed at improving the HRQOL of these individuals.Read the special issue in Archives of PM&R