Is Traumatic Brain Injury Severity in Service Members and Veterans Related to Health-Related Quality of Life in Their Caregivers? : The Journal of Head Trauma Rehabilitation

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Is Traumatic Brain Injury Severity in Service Members and Veterans Related to Health-Related Quality of Life in Their Caregivers?

Brickell, Tracey A. DPsych; Lippa, Sara M. PhD; Wright, Megan M. MA; Varbedian, Nicole V. BS; Tippett, Corie E. MA; Byrd, Anice M. BS; French, Louis M. PsyD; Lange, Rael T. PhD

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Journal of Head Trauma Rehabilitation: November/December 2022 - Volume 37 - Issue 6 - p 338-349
doi: 10.1097/HTR.0000000000000802
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Abstract

TRAUMATIC BRAIN INJURY (TBI) is common among service members and veterans (SM/Vs). Since 2000, the US Department of Defense (DoD) has recorded more than 444 000 TBIs in members of the Armed Forces.1 TBIs are typically categorized as open/penetrating, or closed, which is further classified into mild, moderate, or severe. Worse recovery is expected as TBI severity increases, with prognosis for a penetrating TBI, where an external object breaches the cranial vault, generally the least favorable.2,3 A complicated mild TBI (MTBI) is often differentiated from an uncomplicated MTBI based on the presence of day-of-injury intracranial abnormality. Recovery following a complicated MTBI is often similar to a moderate TBI, although the findings are mixed.4–9 Recovery from an uncomplicated MTBI is expected within the first few weeks and months postinjury. Postconcussion symptoms should not newly develop, get worse, or be cyclical in the weeks, months, or years postinjury. Comorbid conditions are common in a military population and may be associated with the TBI event itself or occur pre- or postinjury. Comorbid conditions, particularly posttraumatic stress disorder (PTSD) and depression, can have a profound influence on long-term postconcussion symptom reporting following a TBI of any severity and have been implicated in “persistent” or “newly developed” self-reported postconcussion symptoms long after a remote uncomplicated MTBI.10–13

SM/Vs often require ongoing caregiving support from family members post-TBI.14,15 A large body of research has accumulated documenting poor health-related quality of life (HRQOL) among caregivers of SM/Vs following TBI across physical, mental health, and social HRQOL domains.16–25 However, only a small number of studies have examined whether caregiver HRQOL differs across SM/V TBI severity and the findings are mixed.

Using focus group methodology, our group examined HRQOL across caregiver groups based on SM/V TBI severity.26 Thematic analysis using a constant comparative approach revealed that 11 HRQOL themes emerged from the total sample (eg, Social Isolation, Stress/Anxiety, Depression, Family Conflict, Sleep Issues). A higher proportion of caregivers of SM/Vs following a more severe TBI (moderate, severe, or penetrating TBI) endorsed HRQOL themes than caregivers of SM/Vs following an MTBI (uncomplicated or complicated MTBI). This was attributed to differences in dialogue between spouses and nonspouses (eg, parents). Caregivers of SM/Vs with more severe TBI were more likely to be a parent (spouse: n = 3; parent: n = 7), whereas caregivers of SM/Vs with MTBI were more likely to be a spouse (spouse: n = 18; parent: n = 1). As a nonmilitary beneficiary, nonspouses referenced unique challenges and unmet caregiving needs, such as access to on-base treatment facilities and services that would otherwise support them in providing care to the SM/V. Family members who are eligible military beneficiaries of the SM/V (ie, spouses and children) have access to certain privileges that caregivers who are not an eligible military beneficiary (ie, parents and siblings) do not automatically qualify for, such as access to military medical treatment facility grounds, military healthcare, and on-base conveniences. Nonspouses also discussed challenges in their caregiving role having to quickly adapt to the military culture and language.

In other research by our group, TBI severity was used as an independent variable to examine the association of SM/V TBI severity with caregiver HRQOL. Caring for an SM/V following an uncomplicated MTBI, but not more severe TBI (ie, complicated mild, moderate, severe, or penetrating TBI), was related to worse caregiver mental health20 and burden27 but not resilience22 or family functioning.21 Since the majority of SM/Vs experienced injuries more than 7 years ago, and most had mental health comorbidities, it was concluded that care provision for mental health symptoms was likely related to poor HRQOL and less likely to symptoms associated with brain injury. No differences were reported between parent and intimate partner caregivers for mental health,20 resilience,22 and family functioning21 and not explored for burden27 or in relation to SM/V TBI severity.

In other research, the findings have also been inconsistent. Among family members of SM/Vs following a mild, moderate, or severe TBI, caregiver burden, financial difficulty, and the SM/V's PTSD, but not TBI severity, were associated with family member depressive symptoms.18 The relationship of the family member to the SM/V (eg, spouse or parent) was not related to caregiver depression. Among intimate partner and parent caregivers of SM/Vs following a severe or penetrating TBI, no differences in personal strain, role strain, or social support were found. Other SM/V TBI severities were not examined.25 In other research, intimate partner caregivers reported worse self-esteem, loneliness, social support, household income, eating, and family functioning than parent caregivers of SM/V following TBI/polytrauma. TBI severity was not examined.28 Elsewhere, spouses reported worse sleep impairment, fatigue, mental health, and social outcomes than parent and other family caregivers.29 A severe TBI classification was associated with worse caregiver social outcomes than complicated MTBI. Uncomplicated MTBI was not examined.

In summary, previous research has indicated that differences in physical, mental, and social HRQOL may exist between caregivers of SM/Vs with more severe TBI than with MTBI but the findings are inconsistent. Worse HRQOL has been found for caregivers of SM/Vs following a remote uncomplicated MTBI, which was attributed to SM/V mental health comorbidity. Worse HRQOL among caregivers of SM/Vs with more severe TBI has also been found, which was attributed to differences between parent and intimate partner caregivers. The findings have also been mixed for research investigating differences in HRQOL between parents and intimate partner caregivers, but this research did not consider HRQOL within context of SM/V TBI severity. The primary aim of the current study was to examine caregiver HRQOL across SM/V TBI severity caregiver groups. Sociodemographic, caregiving, and SM/V medical/military variables were also examined across TBI severity caregiver groups. Where sample sizes permitted, a secondary aim explored differences between parent and intimate partner caregivers.

METHODS

Participants

Participants included 316 caregivers of SM/Vs following a TBI (97.2% female, 85.1% White) prospectively enrolled in the Traumatic Brain Injury Center of Excellence (TBICoE) 15-Year Longitudinal Caregiver and Family Member Study (Section 721 NDAA [National Defense Authorization Act] FY07). Caregivers were recruited from US military treatment facilities and nationwide publicizing efforts (eg, social media and events). Caregivers were included if they provided signed informed consent, were 18 years or older, fluent in English, had no significant medical conditions, and identified as caring for a SM/V with a TBI diagnosed at a Department of Defense (DoD) or Department of Veterans Affairs (VA) medical treatment facility. Caregivers were divided into 2 groups based on the SM/V's TBI severity: (1) caregivers of SM/Vs following an uncomplicated MTBI (UnMTBI Caregiver group, n = 246), and (2) caregivers of SM/Vs following a complicated mild, moderate, severe, or penetrating TBI (STBI Caregiver group, n = 70). The STBI Caregiver group was further divided into 2 subgroups: (1) STBI Parent Caregiver group (n = 21), and (2) STBI Intimate Partner Caregiver group (n = 49). Because of inadequate sample size (n = 6), parent caregivers of an SM/V with uncomplicated MTBI were excluded. The UnMTBI group consisted of intimate partner caregivers only. One sibling caregiver (n = 1) and caregivers of SM/Vs who did not consent to the record review (n = 24) were also excluded.

SM/Vs (82.3% veterans) provided signed informed consent to review their medical records for TBI severity and comorbid diagnoses (eg, PTSD, depression, chronic pain). Injury details were case conferenced with a doctoral-level study psychologist for TBI severity assignment. TBI severity was classified on the basis of duration of loss of consciousness (LOC), posttraumatic amnesia (PTA), alteration of consciousness (AOC), and trauma-related intracranial abnormality (ICA). DoD/VA criteria30 were used, except complicated MTBI was distinguished from moderate TBI: (1) uncomplicated MTBI (n = 246): (a) LOC of 30 minutes or less, PTA of 24 hours or less, and/or AOC present; and (b) ICA absent; (2) complicated MTBI (n = 12): (a) PTA of 24 hours or less, LOC of 30 minutes or less, and/or AOC present, and (b) ICA present; (b) moderate TBI (n = 7): LOC of more than 30 minutes to 24 hours and/or PTA of more than 1 to 7 days; (c) severe TBI (n =24): LOC of more than 24 hours and/or PTA of more than 7 days; (d) penetrating TBI (n = 27): a breach of the cranial vault and/or dura mater by an external object (eg, bullet, shrapnel) and/or skull fragment (ie, depressed skull fracture). When available, a valid Glasgow Coma Scale score unaffected by sedation, intubation, or alcohol intoxication was used as follows: mild = 13-15, moderate = 9-12, severe = 3-8. SM/Vs (n = 67) with a diagnosis of TBI in their records with limited or inconsistent injury detail were assigned an uncomplicated MTBI severity based on an absence of information that would otherwise indicate a more severe TBI (ie, absence of medical evacuation, hospital stay, and neuroimaging scans indicating TBI-related ICA).

All study activities were conducted in accordance with the institutional review board of Walter Reed National Military Medical Center and the guidelines of the Declaration of Helsinki.

Measures and procedure

Caregivers completed questionnaires and sociodemographic (eg, age, income) caregiving (eg, hours caregiving, activities caregiving for) and SM/V items (eg, combat exposure), between 2018 and 2019, via telephone/web-based procedures, from a private location with a study member on the telephone.

Twelve Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Measurement System31–33 (https://www.healthmeasures.net) short form measures were administered (see the “Results” section). A total raw score for each measure was converted to a T-score (M = 50, SD = 10). Higher scores reflect worse functioning with the exception of Ability to Participate Social Roles and Emotional Support that were recoded so that higher scores reflect worse functioning.

The Patient-Reported Outcomes Measurement Information System (PROMIS) Companionship and National Institutes of Health (NIH) Toolbox Perceived Rejection34 (https://www.healthmeasures.net) short form measures were administered. A total raw score for each measure was converted to a T-score (M = 50, SD = 10). For Perceived Rejection, higher scores reflect worse functioning. For Companionship, scores were recoded so that higher scores reflect worse functioning.

The SF-12v2 Health Survey (SF-12v2)35,36 Physical Component HRQOL items were administered. Scores were represented as T-scores (M = 50, SD = 10). Scores were recoded so that higher scores reflect worse functioning.

The Mayo-Portland Adaptability Inventory 4th Edition (MPAI-4)37 (http://www.tbims.org/mpai) Adjustment Index and Ability Index items were completed by caregivers to assess SM/V functional ability. Scores were represented as T-scores (M = 50, SD = 10). Higher scores reflect worse functioning.

Statistical analysis plan

Using analysis of variance (ANOVA) (continuous variables) and chi-square analysis (categorical variables), group comparisons were conducted to examine sociodemographic, caregiving, and SM/V variables by STBI and UnMTBI Caregiver groups. Second, ANOVAs were undertaken to explore differences between the HRQOL measures across the STBI Caregiver and UnMTBI Caregiver groups. Third, T-scores on caregiver HRQOL measures were classified as clinically elevated using a cutoff score of 60 T or more (1 SD from the mean has been cited as representing moderate to severe symptoms).38–40 Chi-square analyses (or Fisher's exact tests) were undertaken to compare the prevalence of caregivers with clinically elevated scores on HRQOL measures simultaneously across the 2 TBI caregiver severity groups. Fourth, exploratory ANOVAs were undertaken to further examine differences between HRQOL measures by the UnMTBI Caregiver group and the STBI Parent and Intimate Partner Caregiver subgroups. Because of the small sample size in the STBI Parent Caregiver group, these analyses should be interpreted with caution. Finally, exploratory chi-square analyses (or Fisher's exact tests) were performed to examine the prevalence of caregivers with clinically elevated scores on HRQOL measures simultaneously across the 3 TBI caregiver severity groups.

RESULTS

Compared with the STBI Caregiver group, the UnMTBI Caregiver group was more likely to report (1) a younger age (P = .002, d = 0.44), (2) having less time for themselves (P = .001, d = 0.43), (3) worse scores on the MPAI-4 Adjustment Index (P = .012, d = 0.34), (4) helping the SM/V with symptoms of PTSD (P < .001, d = 0.50), depression (P = .001, d = 0.44), and pain or headaches (P = .002, d = 0.39), (5) caring for an older SM/V (P < .001, d = 0.47), and (6) caring for an SM/V with a diagnosis of PTSD (P < .001, d = 0.64), chronic headache (P < .001, d = 0.54), and chronic back pain (P ≤ .001, d = 0.57). The STBI Caregiver group was more likely to report receiving no help with their caregiving duties (P = .001, d = 0.45) (see Table 1).

TABLE 1 - Descriptive statistics for caregiver sociodemographic and care provision, and SM/V injury and comorbidity variables by traumatic brain injury severity caregiver groupa
Caregiver variables 1. STBI Caregiver 2. UnMTBI Caregiver ANOVA or chi square
M SD M SD P d Effect size
Age, y 44.7 11.6 40.9 7.7 .002 0.44 Small-medium
Time caregiving, yb 8.1 3.7 7.2 3.6 .065 0.25 Small
n % n % P h Effect size
Education
Less than high school/some college 38 54.3 121 49.2 .452 0.11 Very small
Bachelor's degree or higher 32 45.7 125 50.8
Household incomeb
<$70 000 29 41.4 94 38.5 .661 0.06 Very small
>$70 000 41 58.6 150 61.5
Employed 31 44.3 133 54.1 .148 0.19 Small
Caregiving responsibilities affected employment
Agree/strongly agree 25 35.7 101 41.1 .421 0.11 Very small
Neutral/strongly disagree/disagree/not in labor force 45 64.3 145 58.9
Hours per day caregiving
>6 36 51.4 127 51.6 .977 0.00 Very small
≤5 34 48.6 119 48.4
No help with caregiving duties 50 71.4 122 49.6 .001 0.45 Medium
Hours per day for self
≤1 27 38.6 148 60.2 .001 0.43 Small-medium
>2 43 61.4 98 39.8
Helps with PTSD 44 62.9 208 84.6 <.001 0.50 Medium
Helps with depression 43 61.4 199 80.9 .001 0.44 Small-medium
Helps with irritability, anger, aggression 55 78.6 202 82.1 .502 0.09 Very small
Helps with pain or headaches 46 65.7 203 82.5 .002 0.39 Small-medium
Helps with fatigue 48 68.6 181 73.6 .408 0.11 Very small
Service member/veteran variables M SD M SD P d Effect size
Age, y 37.9 7.5 41.3 7.1 <.001 0.47 Medium
Time postinjury, yb 10.3 4.3 11.3 5.4 .143 0.19 Small
MPAI-4 Ability Index 51.5 9.8 51.2 10.2 .786 0.04 Very small
MPAI-4 Adjustment Index 51.4 11.4 55.0 10.4 .012 0.34 Small
n % n % P h Effect size
Combat exposureb 59 88.1 224 93.3 .155 0.19 Small
PTSD 38 54.3 205 83.3 <.001 0.64 Medium
Depression 28 40.0 128 52.0 .076 0.24 Small
Chronic headaches 32 45.7 176 71.5 <.001 0.54 Medium
Chronic back pain 32 45.7 179 72.8 <.001 0.57 Medium
Chronic pain (other) 36 51.4 148 60.2 .191 0.17 Small
Abbreviations: MPAI-4, Mayo-Portland Adaptability Inventory 4th Edition; PTSD, posttraumatic stress disorder; SM/V, service member/veteran; STBI, complicated mild, moderate, severe, or penetrating traumatic brain injury; UnMTBI, uncomplicated mild traumatic brain injury.
aN = 316 (STBI Caregiver group, n = 70 [30% parent, 70% spouse/partner]; UnMTBI Caregiver group, n = 246 [100% spouse/partner]). Cohen's d effect size interpretation: small (0.2), medium (0.5), and large (0.8).
bNine or fewer participants' missing data.

The UnMTBI Caregiver group reported worse scores on 12 of 15 measures than the STBI Caregiver group (P < .001-.046, d = 0.27-0.48). The largest effect sizes were reported for Caregiver Vigilance (P < .001, d = 0.48), Sleep-Related Impairment (P = .001, d = 0.46), Social Isolation (P = .002, d = 0.41), and Caregiver Strain (P = .003, d = 0.40) measures (see Table 2).

TABLE 2 - Descriptive statistics for caregiver health-related quality of life by STBI and UnMTBI caregiver groupsa
STBI Caregiver UnMTBI Caregiver ANOVA
M SD M SD P d Effect size
SF-12v2
Physical Component Summaryb 47.3 9.5 49.3 10.4 .161 0.19 Small
TBI-CareQOL
Anxiety 51.3 9.4 53.8 9.1 .041 0.28 Small
Depression 50.2 8.8 51.6 9.3 .269 0.15 Small
Ability to Participate Social Rolesb 52.5 6.2 54.7 8.3 .044 0.28 Small
Emotional Supportb 50.2 8.1 53.1 7.9 .006 0.37 Small-medium
Social Isolation 49.5 9.4 53.1 8.4 .002 0.41 Small-medium
Sleep-Related Impairment 54.3 8.8 58.5 9.1 .001 0.46 Medium
Fatigue 53.4 8.7 57.0 9.8 .006 0.38 Small-medium
Emotional Suppression 44.8 10.4 47.7 10.8 .046 0.27 Small
Caregiver Vigilance 49.7 9.6 54.2 9.5 <.001 0.48 Medium
Feeling Trapped 52.1 7.8 53.7 8.4 .163 0.19 Small
Caregiver-Specific Anxiety 51.4 8.7 54.4 9.0 .013 0.34 Small
Caregiver Strain 48.5 7.8 51.7 8.0 .003 0.40 Small-medium
PROMIS
Companionshipb 49.7 7.8 52.5 7.6 .007 0.37 Small-medium
NIH Toolbox
Perceived Rejection 51.4 12.3 55.6 11.7 .009 0.35 Small-medium
Abbreviations: NIH, National Institutes of Health; PROMIS, Patient-Reported Outcomes Measurement Information System; SF-12v2, SF-12v2 Health Survey; STBI, complicated mild, moderate, severe, or penetrating traumatic brain injury; TBI-CareQOL, Traumatic Brain Injury Caregiver Quality of Life; UnMTBI, uncomplicated mild traumatic brain injury.
aN = 316 (STBI Caregiver group, n = 70; UnMTBI Caregiver group, n = 246). Cohen's d effect size interpretation: small (0.2), medium (0.5), and large (0.8).
bScores were transposed to indicate that higher scores indicate worse functioning.

There was a significantly higher proportion of caregivers in the UnMTBI Caregiver group who had clinically elevated scores than the STBI Caregiver group for 6 of 15 comparisons (P = .004-.022, h = 0.33-0.56). For example, 51.6% of the UnMTBI Caregiver group had 3 or more clinically elevated scores compared with 32.9% of the STBI Caregiver group (P = .006, h = 0.38) (see Table 3).

TABLE 3 - Prevalence of clinically elevated scores on health-related quality of life measures by STBI and UnMTBI caregiver groupsa
Number of clinically elevated scores 1. STBI Caregiver % 2. UnMTBI Caregiver % % Diff Chi square
P h Effect size
All 15 scores 0.0 0.0 0.0 ... ... ...
≥14 0.0 1.2 1.2 1.000b 0.20 Small
≥13 0.0 2.0 2.0 .590b 0.28 Small
≥12 0.0 2.4 2.4 .345b 0.32 Small
≥11 0.0 5.3 5.3 .080b 0.47 Medium
≥10 0.0 7.3 7.3 .016b 0.56 Medium
≥9 1.4 11.4 10.0 .011 0.45 Medium
≥8 4.3 16.7 12.4 .008 0.41 Small-medium
≥7 11.4 19.9 8.5 .103 0.24 Small
≥6 18.6 28.5 9.9 .097 0.24 Small
≥5 22.9 34.6 11.7 .064 0.26 Small
≥4 27.1 42.3 15.2 .022 0.33 Small
≥3 32.9 51.6 18.7 .006 0.38 Small-medium
≥2 42.9 62.2 19.3 .004 0.38 Small-medium
≥1 65.7 76.4 10.7 .071 0.24 Small
Abbreviations: % diff, percent difference; STBI, complicated mild, moderate, severe, or penetrating traumatic brain injury; UnMTBI, uncomplicated mild traumatic brain injury.
aN = 316 (STBI Caregiver group, n = 70; UnMTBI Caregiver group, n = 246). Cohen's h effect size interpretation: small (0.2), medium (0.5), and large (0.8).
bFisher's exact test used because of small count in fewer than 2 cells.

There were significant differences across the UnMTBI Caregiver group and STBI Parent and Intimate Partner Caregiver subgroups on 11 of 15 measures (P < .001-.033). Pairwise comparisons revealed that the UnMTBI Caregiver group reported significantly worse scores on 10 measures than the STBI Intimate Partner Caregiver group (P < .001-.029, d = 0.34-0.61) and 5 measures compared with the STBI Parent Caregiver group (P = .006-.041, d = 0.47-0.62). The largest effect sizes were found between the UnMTBI Caregiver and STBI Parent Caregiver groups for Caregiver Vigilance (P = .006, d = 0.62) and Sleep-Related Impairment measures (P = .009, d = 0.60) and the UnMTBI Caregiver and STBI Intimate Partner Caregiver groups for Perceived Rejection (P < .001, d = 0.61) and Emotional Support (P = .001, d = 0.55). The STBI Parent Caregiver group reported significantly worse scores on 3 measures than the STBI Intimate Partner Caregiver group (P = .001-.027, d = 0.59-0.88). The largest effect sizes were found for Physical Component Summary (P = .001, d = 0.88) and Perceived Rejection (P = .001, d = 0.87). Meaningful differences (effect sizes ≥0.40) were also found for 2 comparisons, though these did not reach statistical significance, possibly due to the small sample size of the STBI Parent Caregiver group. The UnMTBI Caregiver group reported worse scores on Fatigue (P = .053, d = 0.44) than the STBI Parent Caregiver group. The STBI Parent Caregiver group reported worse scores on Emotional Suppression (P = .086, d = 0.45) than the STBI Intimate Partner Caregiver group (see Table 4).

TABLE 4 - Descriptive statistics for caregiver health-related quality of life by traumatic brain injury severity caregiver groupa
1. STBI Parent Caregiver 2. STBI Intimate Partner Caregiver 3. UnMTBI Caregiver P Summary P < .05 Pairwise comparisons
1 vs 2 1 vs 3 2 vs 3
M SD M SD M SD P d P d P d
SF-12v2
Physical Component Summaryb 52.7 11.4 45.0 7.5 49.3 10.4 .006 2 < 1 and 3 .001 0.88 .153 0.33 .007 0.43
TBI-CareQOL
Anxiety 49.5 9.7 52.0 9.3 53.8 9.1 .073 1 < 3 .318 0.26 .041 0.47 .207 0.20
Depression 49.5 7.5 50.6 9.4 51.6 9.3 .489 ... .635 0.13 .303 0.23 .472 0.11
Ability to Participate Social Rolesb 53.1 6.9 52.2 5.8 54.7 8.3 .119 ... .571 0.15 .417 0.19 .051 0.31
Emotional Supportb 53.4 7.9 48.8 7.8 53.1 7.9 .002 2 < 1 and 3 .027 0.59 .877 0.04 .001 0.55
Social Isolation 50.4 10.2 49.1 9.2 53.1 8.4 .009 2 < 3 .617 0.13 .167 0.32 .003 0.46
Sleep-Related Impairment 53.0 9.7 54.8 8.5 58.5 9.1 .002 1 and 2 < 3 .440 0.20 .009 0.60 .010 0.41
Fatigue 52.7 9.4 53.7 8.5 57.0 9.8 .020 2 < 3 .668 0.11 .053 0.44 .027 0.35
Emotional Suppression 48.1 10.2 43.4 10.4 47.7 10.8 .033 2 < 3 .086 0.45 .879 0.03 .011 0.40
Caregiver Vigilance 48.3 10.1 50.3 9.5 54.2 9.5 .002 1 and 2 < 3 .430 0.21 .006 0.62 .008 0.42
Feeling Trapped 53.7 8.2 51.4 7.6 53.7 8.4 .210 ... .253 0.30 .968 0.01 .080 0.27
Caregiver-Specific Anxiety 49.8 8.6 52.2 8.7 54.4 9.0 .028 1 < 3 .300 0.27 .023 0.52 .101 0.26
Caregiver Strain 47.5 7.0 49.0 8.2 51.7 8.0 .010 1 and 2 < 3 .462 0.19 .018 0.54 .029 0.34
PROMIS
Companionshipb 51.0 8.8 49.1 7.3 52.5 7.6 .017 2 < 3 .368 0.24 .381 0.20 .005 0.45
NIH Toolbox
Perceived Rejection 58.4 10.6 48.4 11.8 55.6 11.7 <.001 2 < 1 and 3 .001 0.87 .300 0.24 <.001 0.61
Abbreviations: NIH, National Institutes of Health; PROMIS, Patient-Reported Outcomes Measurement Information System; SF-12v2, SF-12v2 Health Survey; STBI, complicated mild, moderate, severe, or penetrating traumatic brain injury; TBI-CareQOL, Traumatic Brain Injury Caregiver Quality of Life; UnMTBI, uncomplicated mild traumatic brain injury.
aN = 316 (STBI Parent Caregiver, n = 21; STBI Intimate Partner Caregiver, n = 49; UnMTBI Caregiver, n = 246 [100% spouse/partner]). Cohen's d effect size interpretation: small (0.2), medium (0.5), and large (0.8).
bScores were transposed to indicate that higher scores indicate worse functioning.

There were significant differences for the prevalence of clinically elevated scores on HRQOL measures across the UnMTBI Caregiver group and the STBI Parent and Intimate Partner Caregiver subgroups on 6 of 15 comparisons (P = .011-.034). Pairwise comparisons revealed that a significantly higher proportion of caregivers in the UnMTBI Caregiver group had clinically elevated scores than the STBI Intimate Partner Caregiver group for 7 comparisons. For example, 51.6% of the UnMTBI Caregiver group had 3 or more clinically elevated scores compared with 28.6% the STBI Intimate Partner Caregiver group (P = .003, h = 0.48) (see Table 5).

TABLE 5 - Prevalence of clinically elevated scores on health-related quality of life measures by traumatic brain injury severity caregiver groupa
Number of clinically elevated scores 1. STBI Parent Caregiver % 2. STBI Intimate Partner Caregiver % 3. UnMTBI Caregiver % Pairwise comparisons Summary P < .05
1 vs 2 1 vs 3 2 vs 3
χ2, P P h P h P h
All 15 scores 0.0 0.0 0.0 ...b ...b ... ...b ... ...b ... ...
≥14 0.0 0.0 1.2 1.000b ...b ... 1.000b 0.20 1.000b 0.20 ...
≥13 0.0 0.0 2.0 .713b ...b ... 1.000b 0.28 .595b 0.28 ...
≥12 0.0 0.0 2.4 .732b ...b ... 1.000b 0.32 .594b 0.32 ...
≥11 0.0 0.0 5.3 .213b ...b ... .608b 0.47 .136b 0.47 ...
≥10 0.0 0.0 7.3 .063b ...b ... .376b 0.56 .051b 0.56 ...
≥9 4.8 0.0 11.4 .016b .300b 0.45 .711b 0.24 .007b 0.69 2 < 3
≥8 9.5 2.0 16.7 .011b .212b 0.34 .544b 0.21 .007 0.55 2 < 3
≥7 9.5 12.2 19.9 .321b 1.000b 0.08 .385b 0.30 .208 0.22 ...
≥6 23.8 16.3 28.5 .205 .511b 0.19 .649 0.10 .079 0.29 ...
≥5 33.3 18.4 34.6 .085 .172 0.35 .910 0.02 .026 0.37 2 < 3
≥4 38.1 22.4 42.3 .034 .177 0.34 .709 0.09 .009 0.43 2 < 3
≥3 42.9 28.6 51.6 .012 .244 0.30 .440 0.17 .003 0.48 2 < 3
≥2 42.9 42.9 62.2 .015 1.000 0.00 .082 0.38 .012 0.38 2 < 3
≥1 81.0 59.2 76.4 .032 .079 0.49 .791b 0.11 .012 0.38 2 < 3
Abbreviations: STBI, complicated mild, moderate, severe, or penetrating traumatic brain injury; UnMTBI, uncomplicated mild traumatic brain injury.
aN = 316 (STBI Parent Caregiver, n = 21; STBI Intimate Partner Caregiver, n = 49; UnMTBI Caregiver, n = 246 [100% spouse/partner]).
Cohen's h effect size interpretation: small (0.2), medium (0.5), and large (0.8).
bFisher's exact test used because of small count in fewer than 2 cells.

DISCUSSION

While poor HRQOL among caregivers assisting SM/Vs post-TBI has been consistently reported, the association of caregiver HRQOL and SM/V's TBI severity has been inconsistent.18,20–22,27,29 In the current study, intimate partner caregivers in the UnMTBI group tended to report worse HRQOL and more clinically elevated HRQOL scores than intimate partner and parent caregivers in the STBI group, particularly the STBI Intimate Partner Caregiver group. While these findings suggest that caring for an SM/V following an uncomplicated MTBI is associated with worse caregiver HRQOL, it is imperative to consider the findings for the UnMTBI Caregiver group in the context of the natural history of recovery from uncomplicated MTBI.

The majority of SM/Vs who sustain an uncomplicated MTBI recover to baseline and return to full duty within a few weeks.1 However, some report postconcussion symptoms many months and years postinjury. In military samples, it has been well documented that the majority of variance in symptom reporting following a remote uncomplicated MTBI is largely explained by PTSD symptoms.10–12,41–43 The UnMTBI Caregiver group was caring for an SM/V who was on average 11.3 years post-TBI, and most SM/Vs should have recovered by the time the caregiver completed the HRQOL measures. Compared with the STBI Caregiver group, the UnMTBI Caregiver group was more likely to report worse SM/V functional ability relating to Adjustment (eg, anxiety, depression, pain, and headache); caring for an SM/V with PTSD, chronic headaches, and back pain; and assisting SM/Vs with symptoms of PTSD, depression, and pain or headaches. It is likely that assisting SM/Vs with symptoms related to comorbid conditions was a driving force behind poorer caregiver HRQOL in the UnMTBI Caregiver group. The association between SM/V PTSD and HRQOL in intimate partners has been well documented.44 Intimate partner caregivers of SM/V with PTSD often report sleep disturbances and feeling anxious and vigilant navigating the SM/V's volatile mood and behavior.45–47 Accommodation behaviors are often adopted by intimate partners to manage or reduce the SM/Vs symptoms, such as limiting participation in social activities, suppressing needs and emotions, avoiding physical and emotional intimacy, and taking over responsibilities. The SM/V's emotional and withdrawal behavior related to PTSD can be experienced as rejection when internalized by intimate partners.44,48 In any relationship, it is important to consider both the individual and couple variables and the potential bidirectional associations between SM/V and caregiver outcomes. For example, intimate partner accommodation behaviors can maintain or exacerbate the SM/V's PTSD-related avoidance behaviors, increase intimate partner strain and psychological distress, and decrease satisfaction and intimacy in their relationship.44,48 Couples may also have discrepancies in their report of symptoms and distress. Future research should consider collecting dyad data with both the SM/V and the caregiver.

Findings for differences in HRQOL between intimate partner and parent caregivers of SM/Vs post-TBI have been mixed.18,24,25,28,29 In the current study, the UnMTBI Caregiver group reported worse scores on several HRQOL measures than the STBI Caregiver group. Within the STBI Caregiver group, parent caregivers reported worse scores on a few HRQOL measures than intimate partner caregivers. These findings are both consistent and inconsistent with findings from our focus group discussion results with a subset of the current sample. A higher proportion of caregivers assisting SM/Vs following a more severe TBI reported problematic HRQOL during the focus group discussions than caregivers assisting a SM/V following a MTBI.26 This was attributed to unique challenges as a nonmilitary beneficiary voiced by nonspouse caregivers compared with spouse caregivers. While the findings for parent and intimate partner caregivers within the STBI Caregiver group were similar to the focus group discussion results, the findings for the UnMTBI Caregiver group and STBI Caregiver groups were different. Different findings between studies may be attributed to different time frames caregivers were referencing. The focus groups were conducted between 2013 and 2014, and caregivers often referenced challenges as a nonmilitary beneficiary during the acute TBI recovery period early into the post-9/11 conflict period (lack of base access, unfamiliar military culture). Data from the current study were collected between 2018 and 2019 and focused on current HRQOL, on average 7 to 8 years post-TBI. Much has changed in the DoD, VA, and community for US military caregivers, resulting in increased recognition of and attention to the challenges and unmet needs military caregivers experience and better access to resources and services for their individual and caregiving needs. Some examples are as follows: (a) the Caregivers and Veterans Omnibus Health Services Act of 2010 (Public Law No. 111-163) and implementation of the VA Program of Comprehensive Assistance for Family Caregivers; (b) the NDAA of 2010 (Public Law No. 111-84) and implementation of Special Compensation for Assistance with Activities of Daily Living; and (c) various community-based supports such as the Elizabeth Dole Foundation's Hidden Hero's Champaign and Operation Homefront's Hearts of Valor. Another explanation could be differences in data collection and analytical approaches. Survey-style quantitative data are collected through self-report questionnaires and analyzed through statistical comparisons. Focus group qualitative data are collected through group conversations and analyzed by identifying underlying meaning and complex interrelationships in individual narratives. Nonetheless, the findings highlight that regardless of TBI severity, continued support from the VA, DoD, and community programs is required for military caregivers, especially for those assisting SM/Vs with comorbidities.

Several potential limitations are worth mentioning. Exploratory analyses were undertaken for the STBI Parent Caregiver group and the small sample size may have undermined statistical power. Therefore, some true differences between the groups may have been missed and findings should be interpreted with caution. Effect sizes were provided for all comparisons for use in interpreting the magnitude of relationships between groups. It is also acknowledged that a number statistical analyses performed without adjustment (eg, Bonferroni) may lead to significant results that were found by chance, rather than true group differences. In addition, we excluded parent caregivers from the UnMTBI Caregiver group due to a small sample size. Parents and other nonmilitary beneficiary caregivers (eg, siblings) have been a consistent minority in previous research.17,25,40,49–52 Further research is recommended with larger sample sizes of nonmilitary beneficiary caregivers. However, oversampling and targeted recruitment strategies may be required to achieve adequate sample sizes. A second potential limitation relates to the accuracy of information in military medical records, particularly combat-related, that is often confounded by inconsistent and insufficient information. To limit the potential for misdiagnosis, all available DoD/VA records were comprehensively reviewed and case conferenced with a doctoral-level study psychologist. Finally, it is acknowledged that other SM/V comorbid conditions not measured in this study (eg, substance-related and addictive disorders) may also be associated with caregiver HRQOL outcomes.

In conclusion, this study adds to a significant body of literature providing support for the relationship between poor caregiver HRQOL and care provision for SM/Vs following a TBI with comorbidities. This relationship tends to be more elevated among intimate partner caregivers of an SM/V following a remote uncomplicated MTBI, mostly likely due to the prevalence of comorbid conditions. Interventions that focus on the SM/V's TBI and other comorbidities, the caregiver's behavioral health problems, and the relationship and family factors that interact with each other will likely have the most success in improving individual and family outcomes for military families. Research has indicated that military caregivers who take part in support services, such as those offered to eligible caregivers in the VA Caregiver Support Program (including nonmilitary beneficiaries), may have a positive influence on health and well-being outcomes for caregivers and healthcare utilization for their veteran care recipients.53–56

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Keywords:

health-related quality of life; intimate partner parent; military caregiver; posttraumatic stress disorder; service member veteran; traumatic brain injury

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