Table 1.
Summary descriptions of the measures that comprise the TBI-CareQoL
| HRQOL Domain | Measure | Measure Description | |
|---|---|---|---|
| Generic Domains (PROMIS, Neuro-QoL, NIH Toolbox, and TBI-QOL) | Negative Aspects of Mental Health | PROMIS Anger* | Angry mood, negative social cognition, and efforts to control anger |
| PROMIS Anxiety* | Fear, hyperarousal, and somatic symptoms related to anxiety (e.g., racing heart) | ||
| PROMIS Depression* | Negative mood, views of self, social cognition, and decreased engagement | ||
| NIHTB Perceived Stress | Perceptions of one’s ability to cope with a situation given available resources | ||
| TBI-QOL Grief/Loss | Sadness, and despair as a result of experiencing loss | ||
| Positive Aspects of Mental Health | Neuro-QoL Positive Affect and Well-Being | Feelings of positive engagement, happiness, joy, and contentment | |
| NIHTB General Life Satisfaction | Evaluation of life experiences and whether one likes their life or not. | ||
| NIHTB Self-Efficacy | Perceptions of one’s capacity to manage a stressor and have control over events | ||
| TBI-QOL Resilience | Perceptions of one’s ability to adapt to life changes or challenging situations | ||
| Physical Health | PROMIS Sleep Disturbance* | Perceived sleep quality, sleep depth, and feeling refreshed after sleeping | |
| PROMIS Fatigue* | Feelings of tiredness and exhaustion that interfere with completion of normal activities | ||
| PROMIS Sleep-Related Impairment | Impairments during waking hours resulting from sleep problems; perceived alertness, sleepiness, and tiredness during usual waking hours | ||
| Positive Aspects of Social Health | PROMIS Ability to Participate in Social Roles and Activities* | Perceptions of one’s ability to perform regular social roles and activities | |
| PROMIS Satisfaction with Social Roles and Activities* | Satisfaction with performing usual social roles and activities | ||
| PROMIS Informational Support* | Availability of information or advice | ||
| PROMIS Emotional Support* | Feelings of being cared for and having someone to confide in | ||
| Negative Aspects of Social Health | PROMIS Social Isolation* | Feelings of being avoided or excluded by others | |
| Caregiver-Specific Domains | Negative Aspects of Mental Health | TBI-CareQOL Caregiver-Specific Anxiety | Feelings of anxiety related to the caregiver role, and concern about the behavior and well-being of the person with TBI |
| TBI-CareQOL Caregiver Strain | Feelings of being overwhelmed, stressed, self-defeated, downtrodden, or beat-down related to the caregiver role | ||
| TBI-CareQOL Feelings of Loss - Self | Feelings of sorrow, mental suffering, or distress over changes that the caregiver has personally experienced related to the TBI | ||
| TBI-CareQOL Feelings of Loss – Person with TBI | Caregiver feelings of sorrow, mental suffering, or distress over changes that the person with TBI has experienced, such as loss of functioning, potential future, or changes in behavior or personality | ||
| TBI-CareQOL Emotional Suppression | Assesses hiding or suppressing negative emotions while acting in the caregiver role (e.g., to protect others or maintain functioning) | ||
| TBI-CareQOL Caregiver Vigilance | Caregiver feelings related to anxiety, hyperarousal, or vigilance related to concerns regarding the emotional or behavioral status of the person with TBI | ||
| Negative Aspects of Social Health | TBI-CareQOL Feeling Trapped | Feelings that one is unable to go places or do things due to caregiving responsibilities | |
| TBI-CareQOL Family Disruption | Feelings of disruption within the family as a result of the TBI | ||
| TBI-CareQOL Military Health Care Frustration | Caregivers’ concern with health care services offered by the Department of Defense and Department of Veterans Affairs | ||
*
= previous publications support the reliability and validity of these measures in caregivers of civilians and service members/veterans with TBI