Survey response burden in caregivers of civilians and service members/veterans with traumatic brain injury

PURPOSE: Caregivers have expressed interest in survey research, yet there is limited information available about survey response burden, ie, the time, effort, and other demands needed to complete the survey. This may be particularly important for caregivers due to excessive time demands and/or stress associated with caregiving. METHOD: Survey response burden indicators were collected as part of a study to develop and validate a patient-reported outcome (PRO) measurement system for caregivers of civilians or service members/veterans (SMVs) with traumatic brain injury (TBI). RESULTS: Compared to the group caring for civilians (n=335), the group caring for SMVs (n=123) was comprised of all women, was younger, had fewer racial/ethnic minorities, had more education, and nearly all were the spouse of a person with TBI. All PRO outcomes were poorer for the group caring for SMVs. Although the caregivers of SMVs had poorer PRO outcomes compared to caregivers of civilians, they were more likely to report that they would recommend the study to others. Caregivers with less education and those from racial/ethnic minority groups had more favorable ratings of their study participation experience, even though they needed more help using the computer or answering the questions. CONCLUSION: The results of this study provide useful information about the acceptability of computer-based survey administration for caregiver PROs. PROs are widely gathered in clinical and health services research and could be particularly useful in TBI care programs. More data are needed to determine the best assessment strategies for individuals with lower education who are likely to require some assistance completing PRO surveys. Studies evaluating PROs administered by multimedia platforms could help researchers and clinicians plan the best strategies for assessing health-related quality of life in TBI caregivers.