Neuro-ICU hospitalization for an acute neurological illness is often traumatic and associated with heightened emotional distress and reduced quality of life (QoL) for both survivors and their informal caregivers (i.e., family and friends providing unpaid care). In a pilot study, we previously showed that a dyadic (survivor and caregiver together) resiliency intervention (Recovering Together [RT]) was feasible and associated with sustained improvement in emotional distress when compared with an attention placebo educational control. Here we report on changes in secondary outcomes assessing QoL.
Survivors (n = 58) and informal caregivers (n = 58) completed assessments at bedside and were randomly assigned to participate together as a dyad in the RT or control intervention (both 6 weeks, two in-person sessions at bedside and four sessions via live video post discharge). We measured QoL domain scores (physical health, psychological, social relations, and environmental), general QoL, and QoL satisfaction using the World Health Organization Quality of Life Abbreviated Instrument at baseline, post treatment, and 3 months’ follow-up. We conducted mixed model analyses of variance with linear contrasts to estimate (1) within-group changes in QoL from baseline to post treatment and from post treatment to 3 months’ follow-up and (2) between-group differences in changes in QoL from baseline to post treatment and from post treatment to 3 months’ follow-up.
We found significant within-group improvements from baseline to post treatment among RT survivors for physical health QoL (mean difference 1.73; 95% confidence interval [CI] 0.39–3.06; p = 0.012), environmental QoL (mean difference 1.29; 95% CI 0.21–2.36; p = 0.020), general QoL (mean difference 0.55; 95% CI 0.13–0.973; p = 0.011), and QoL satisfaction (mean difference 0.87; 95% CI 0.36–1.37; p = 0.001), and those improvements sustained through the 3-month follow-up. We found no significant between-group improvements for survivors or caregivers from baseline to post treatment or from post treatment to 3 months’ follow-up for any QoL variables (i.e., domains, general QoL, and QoL satisfaction together).
In this pilot study, we found improved QoL among survivors, but not in caregivers, who received RT and improvements sustained over time. These RT-related improvements were not significantly greater than those observed in the control. Results support a fully powered randomized controlled trial to allow for a definitive evaluation of RT-related effects among dyads of survivors of acute brain injury and their caregivers.
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The data that support the findings of this study are available from the corresponding author on reasonable request.
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This study was funded by a grant-in-aid from the American Heart Association, Grant 5R21 NR017979 from the National Institute of Nursing Research to Dr. Vranceanu, and the Henry and Allison McCance Center for Brain Health at Massachusetts General Hospital.
Conflicts of Interest
Dr. Vranceanu reported receiving funding from the Department of Defense and the National Institutes of Health and serving on the scientific advisory board for the Calm application, outside of the submitted work. Dr. Macklin reported serving on the scientific advisory boards of Biogen, Cerevance, and Stoparkinson Healthcare Systems, serving on the data safety monitoring boards of Acorda Therapeutics, Novartis Pharmaceuticals, and Takeda Pharmaceutical Company, and receiving grants from Acorda, Amylyx Pharmaceuticals, GlaxoSmithKline, Mitsubishi Tanabe Pharmaceuticals, Ra Pharmaceuticals, Biohaven Pharmaceuticals, Clene Nanomedicine, and Prilenia Therapeutics, outside the submitted work. Dr. Rosand reported receiving grants from the National Institutes of Health and OneMind and serving as a consultant for Boehringer Ingelheim, Pfizer, and New Beta Innovation, outside the submitted work. No other disclosures were reported.
Ethical approval/informed consent
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. Consent was obtained from all individual participants included in the study.
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Lester, E.G., Mace, R.A., Bannon, S.M. et al. Can a Dyadic Resiliency Program Improve Quality of Life in Cognitively Intact Dyads of Neuro-ICU Survivors and Informal Caregivers? Results from a Pilot RCT. Neurocrit Care 35, 756–766 (2021). https://doi.org/10.1007/s12028-021-01222-3
- Quality of life
- Neurological illness