Survey response burden in caregivers of civilians and service members/veterans with traumatic brain injury
Received 25 April 2018
Accepted for publication 12 July 2018
Published 27 February 2019 Volume 2019:10 Pages 59—66
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Dr Colin Mak
Peer reviewer comments 2
Editor who approved publication: Dr Liana DesHarnais Castel
Elizabeth A Hahn,1,2 Phillip A Ianni,3 Robin A Hanks,4 Jennifer A Miner,3 Jenna Freedman,3 Noelle E Carlozzi3
1Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; 2Center for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; 3Center for Clinical Outcomes Development and Application (CODA), Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA; 4Department of Physical Medicine and Rehabilitation, School of Medicine, Wayne State University, Detroit, MI, USA
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.
Keywords: patient-reported outcomes, computer-based survey administration, study participation ratings, military personnel
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