Military Injuries—Understanding Posttraumatic Epilepsy, Health, and Quality-of-Life Effects of Caregiving: Protocol for a Longitudinal Mixed Methods Observational Study (Preprint)

Abstract

BACKGROUND Veterans with post-traumatic epilepsy (PTE), particularly those with comorbidities associated with epilepsy and/or traumatic brain injury (TBI), have poorer health status and higher symptom burden than their peers without PTE. One area that has been particularly poorly studied is that of the role of caregivers in the health of Veterans with PTE and the impact caring for someone with PTE has on the caregivers themselves. OBJECTIVE This will address the following aims: Aim 1: Describe and compare the health and quality of life of Veterans and caregivers of Veterans with and without PTE. Aim 2: Evaluate the change in available supports and unmet needs for services among caregivers of post-9/11 Veterans with PTE over a 2-year period, and compare supports and unmet needs to those without PTE. Aim 3: Identify Veteran and caregiver characteristics associated with the two-year health trajectories of caregivers and of Veterans with PTE compared to Veterans without PTE. METHODS We will conduct a prospective cohort study of the health and quality of life among four groups of Veterans and their caregivers: Veterans with (1) PTE, (2) nontraumatic epilepsy, (3) TBI only, and (4) neither epilepsy nor TBI. We will recruit participants from previous related studies and will collect information about both the Veteran and their primary informal caregivers on health, quality of life, unmet needs for care, PTE/TBI symptoms and treatment, relationship, and caregiver experience. Data sources will include existing data supplemented with primary data: (1) survey data collected at baseline, (2) intermittent brief reporting using ecological momentary assessment, and (3) qualitative interviews. We will make both cross-sectional and longitudinal comparisons, using Veteran-caregiver dyads, along with qualitative findings to better understand risk and promotive factors for quality of life and health among Veterans and caregivers, as well as the bi-directional impact of caregivers and care recipients on one another. RESULTS This study has been approved by the University of Utah and the Salt Lake City VA IRBs and is under review at the Human Research Protection Office of the US Army Medical Research and Development Command. The Service Member, Veteran, and Caregiver Community Stakeholders Group has been formed and the study questionnaire will be finalized once the panel reviews it. We anticipate beginning recruitment and primary data collection in summer, 2021. CONCLUSIONS New national initiatives aim to incorporate the caregiver into the Veteran’s treatment plan; however, we know little about the impacts of caregiving – both positive and negative – on the caregivers themselves and on the Veterans for whom they provide care. We will identify specific needs in this understudied population, which will inform clinicians, patients, families, and policy makers about the specific impacts and needs to equip caregivers in caring for Veterans at home.