Patient and Caregiver Perspectives on Outcome After Severe Traumatic Brain Injury: A Qualitative Study of the Minimally Acceptable Outcome

Archives of Physical Medicine and Rehabilitation · 2026-05-01

Perspectives of Persons With Lived Experience on Acceptable Outcome After Severe Acute Traumatic Brain Injury

Critical Care Medicine · 2026-01-23

OBJECTIVE: Determine the lowest level of functional recovery after severe traumatic brain injury (TBI) that is perceived to be acceptable by persons with TBI and TBI caregivers. DESIGN: Cross-sectional crowdsourcing online survey disseminated May-July 2024. SETTING: United States. SUBJECTS: Persons with a history of TBI requiring assistance with basic daily activities and TBI caregivers. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULT: We developed an expanded version of the Glasgow Outcome Scale-Extended to determine the acceptability of 11 TBI outcome milestones and identify the minimally acceptable outcome (MAO). The survey was completed by 252 persons with TBI (mean [ sd ] 39.8 [13.5] yr old; 67% female; 75% White; 11.9 [12.0] yr post-TBI) and 256 TBI caregivers (41.0 [12.1] yr old; 57% female; 65% White). Among the outcomes selected most frequently as the MAO by persons with TBI ("recovery of basic yes/no communication" and "conscious, but does not communicate") and TBI caregivers ("recovery of basic yes/no communication" and "alive, but permanently unconscious"), recovery of yes/no communication was rated as acceptable by more respondents (persons with TBI: 36% vs. 12%; Z = -7.1, p < 0.0001; TBI caregivers: 40% vs. 14%; Z = -7.1, p < 0.0001). Recovery of communication was therefore identified as the MAO by both cohorts. This outcome was rated as acceptable or somewhat acceptable by 65% of persons with TBI and 72% of caregivers. All outcomes ranging from "alive, but permanently unconscious" to "partially independent in the home" were selected as the MAO significantly more frequently than "completely independent in the home," a common "favorable" recovery cutoff. CONCLUSIONS: Persons with TBI and TBI caregivers identified recovery of communication as the MAO. Persons with lived experience appear more accepting of a greater burden of disability than TBI investigators and providers. Recognizing this disparity in perspectives may influence clinical decision-making regarding goals of care and suggests the need for a more person-centered approach to TBI outcome assessment.

Whose Outcome Is It Anyway? A Person-Centered Approach to Conceptualizing Outcome After Severe TBI

Archives of Physical Medicine and Rehabilitation · 2025-04-01

Perspectives of persons with lived experience on acceptable outcome after traumatic brain injury

medRxiv · 2025-02-23 · 1 citations

Importance: Current approaches to functional outcome assessment in persons with severe traumatic brain injury (TBI) may not reflect the perspectives of persons with TBI or TBI caregivers. Objective: Determine the lowest level of functional recovery after severe TBI that is perceived to be acceptable by persons with TBI and TBI caregivers. Design: Cross-sectional crowdsourcing online survey disseminated May-July 2024. Setting: United States. Participants: Persons with a history of TBI requiring assistance with basic daily activities and TBI caregivers. Exposure(s): History of severe TBI. Outcome(s)/Measure(s): An expanded version of the Glasgow Outcome Scale-Extended (GOSE) designed to determine the level of acceptability of 11 TBI outcome milestones and the minimally acceptable outcome (MAO). Results: The survey was completed by 252 persons with TBI (mean[SD] age 39.8[13.5] years; 67% female; 75% white; 11.9[12.0] years post-TBI) and 256 TBI caregivers (41.0[12.1] years; 57% female; 65% white). Among the outcomes selected most frequently as the MAO by persons with TBI (i.e., "recovery of yes/no communication" and "conscious, but does not communicate") and TBI caregivers (i.e., "recovery of yes/no communication" and "alive, but permanently unconscious"), recovery of reliable yes/no communication was selected as acceptable by most respondents (persons with TBI: 36% vs 12%; Z=-7.1, p&lt;0.0001; TBI caregivers 40% vs 14%, Z=-7.1, p=&lt;0.0001). Recovery of reliable yes/no communication was therefore identified as the MAO by both cohorts. This outcome was rated as acceptable or somewhat acceptable by 65% of persons with TBI and 72% of caregivers. Outcomes representing disability greater than "completely independent in the home" were selected as the MAO more frequently than this common cut-off for "favorable" outcome, which was selected as the MAO by 5.6% and 3.9% persons with TBI and caregivers, respectively. Conclusions/Relevance: Persons with TBI and TBI caregivers identified recovery of yes/no communication, an outcome that is well below the traditional cut-off for "favorable," as the MAO. Persons with lived experience appear more accepting of a greater burden of disability than TBI investigators and providers. Recognizing this disparity in perspectives may influence clinical decision-making regarding goals of care and suggests the need for a more person-centered approach to TBI outcome assessment.

Parental stress and depression in the NICU: an analysis of psychosocial evaluations, infant factors, and stress-related salivary biomarkers

Research Square · 2023-07-10

Abstract Parents of NICU infants frequently experience psychosocial stress and depression. This prospective observational study aimed to determine (a) parental/infant risk factors for parental depression/stress and (b) associations with salivary stress biomarkers. Parents of NICU infants (predicted hospital stay &gt;2 weeks) were eligible. Parental salivary samples and the Edinburgh Postpartum Depression Scale (EPDS) and Perceived Stress Scale were obtained in week one, at six weeks, and near discharge. Results were obtained for 66 parents (36 mothers, 30 fathers) of 39 singleton infants. On initial EPDS, 21% of parents (22% of mothers, 33% of fathers) scored sufficiently high (&gt;12) to warrant referral for support/counseling services. Elevated EPDS was associated with parental AM cortisol and infant illness severity. Self-reported stress differed between mothers and fathers. Salivary stress biomarkers, coupled with validated screening questionnaires, are useful in detecting and intervening with parents at risk for stress and depression during their infants’ NICU admission.

Caring for Dementia Caregivers: Understanding Caregiver Stress During the COVID-19 Pandemic

Gerontology and Geriatric Medicine · 2023-01-01 · 15 citations

More than 16 million Americans provide unpaid care for someone with Alzheimer's disease and related dementias (ADRD). During the COVID-19 pandemic, unpaid caregivers experienced increased chronic severe stress from widespread closures and social distancing. We conducted eight surveys from March 2020 to March 2021 among a cohort of over 10,000 individuals. Cross-sectional analysis was conducted to investigate frequency and ratios of groups reporting increased stress across surveys. A longitudinal analysis was also performed with the 1,030 participants who took more than one survey. We found a growing crisis among dementia caregivers: By Survey 8, current caregivers reported 2.9 times higher stress levels than the comparator group. By that time, 64% of current caregivers reported having multiple stress symptoms typically found in people experiencing severe stress. Both analyses reported increased levels of stressors over time that were more associated with certain caregiver groups. Our findings underscore the urgent need for public policy initiatives and supportive community infrastructure to support ADRD caregivers.

Physical Activity and Alcohol and Drug Use Disorders

2023-05-11

Alcohol and drug use disorders are a major, global public health problem. A number of treatment approaches for alcohol and drug use disorders have been shown to be effective, including cognitive behavioral therapies, 12-step programs, relapse prevention skills training, and pharmacotherapy. Alcohol (at problematic levels) and drug use are associated with lower levels of physical activity. Physical inactivity during adolescence has also been found to be predictive of higher levels of alcohol and drug use in adulthood. Exercise may benefit alcohol- and drug-dependent patients attempting recovery from substance problems through a number of different mechanisms of action. Positive effects of exercise on psychological health have also been shown in individuals with alcohol and drug use disorders. For example, in studies where alcohol and drug use outcomes were not assessed, both aerobic and strength training exercise programs during the course of alcohol treatment have resulted in decreased depressive and anxiety symptoms.

Engaging and Supporting Young Children and their Families in Early Childhood Mental Health Services: The Role of the Family Partner

Community Mental Health Journal · 2021 · 7 citations

• Psychology
• Nursing
• Medicine

This study explores the role of family partners, peer professionals with lived experiences of raising a child with behavioral health needs, and their value in primary and community-care based mental health services for young children aged 0-8 years. Interviews and focus groups were conducted with staff, leadership, and caregiver participants (n = 38) from two early childhood mental health programs and analyzed using thematic analysis. Five interdependent themes emerged: (1) the centrality of lived experience to the family partner role; (2) the importance of the family partner in family engagement and relationship building; (3) the value added by the family partner in navigating systems; (4) the ability of the family partner to build skills and empower caregivers; (5) the role of the family partner in alleviating caregiver stress and other mental health concerns. Adapting and expanding the role of family partners will improve effective mental health care for children and their caregivers.

Phenotyping the Spectrum of Traumatic Brain Injury: A Review and Pathway to Standardization

Journal of Neurotrauma · 2021 · 58 citations

• Computer Science
• Neuroscience
• Medicine

It is widely appreciated that the spectrum of traumatic brain injury (TBI), mild through severe, contains distinct clinical presentations, variably referred to as subtypes, phenotypes, and/or clinical profiles. As part of the Brain Trauma Blueprint TBI State of the Science, we review the current literature on TBI phenotyping with an emphasis on unsupervised methodological approaches, and describe five phenotypes that appear similar across reports. However, we also find the literature contains divergent analysis strategies, inclusion criteria, findings, and use of terms. Further, whereas some studies delineate phenotypes within a specific severity of TBI, others derive phenotypes across the full spectrum of severity. Together, these facts confound direct synthesis of the findings. To overcome this, we introduce PhenoBench, a freely available code repository for the standardization and evaluation of raw phenotyping data. With this review and toolset, we provide a pathway toward robust, data-driven phenotypes that can capture the heterogeneity of TBI, enabling reproducible insights and targeted care.

Epidemiology of Chronic Effects of Traumatic Brain Injury

Journal of Neurotrauma · 2021 · 309 citations

• Medicine
• Intensive care medicine
• Physical therapy

Although many patients diagnosed with traumatic brain injury (TBI), particularly mild TBI, recover from their symptoms within a few weeks, a small but meaningful subset experience symptoms that persist for months or years after injury and significantly impact quality of life for the person and their family. Factors associated with an increased likelihood of negative TBI outcomes include not only characteristics of the injury and injury mechanism, but also the person's age, pre-injury status, comorbid conditions, environment, and propensity for resilience. In this article, as part of the Brain Trauma Blueprint: TBI State of the Science framework, we examine the epidemiology of long-term outcomes of TBI, including incidence, prevalence, and risk factors. We identify the need for increased longitudinal, global, standardized, and validated assessments on incidence, recovery, and treatments, as well as standardized assessments of the influence of genetics, race, ethnicity, sex, and environment on TBI outcomes. By identifying how epidemiological factors contribute to TBI outcomes in different groups of persons and potentially impact differential disease progression, we can guide investigators and clinicians toward more-precise patient diagnosis, along with tailored management, and improve clinical trial designs, data evaluation, and patient selection criteria.