Survey response burden in caregivers of civilians and service members/veterans with traumatic brain injury

Figures & data

Table 1 Sociodemographic and clinical characteristics, and health-related quality of life outcomes of study participants, by caregiver type

Sociodemographic and clinical characteristics	Caregivers of civilian TBI (n=335)	Caregivers of SMV TBI (n=123)	Total (n=458)	P-valuea
Caregiver
Female gender	259 (77%)	123 (100%)	382 (83%)	<0.001
Age (years)	51.8 (13.9)	35.6 (8.6)	47.5 (14.6)	<0.001
Ethnicity, race
Hispanic, any race	36 (11%)	10 (8%)	48 (10%)	<0.001
Non-Hispanic, white	212 (63%)	88 (72%)	300 (66%)
Non-Hispanic, black	68 (20%)	6 (5%)	74 (16%)
Other	12 (4%)	13 (11%)	25 (5%)
Missing	5 (1%)	6 (5%)	11 (2%)
Highest education
Less than HS	45 (13%)	3 (2%)	48 (10%)	<0.001
HS/GED	45 (13%)	5 (4%)	50 (11%)
More than HS	245 (73%)	115 (94%)	360 (79%)
Relationship to person with TBI
Spouse	123 (37%)	118 (96%)	241 (53%)	<0.001
Parent	121 (36%)	5 (4%)	126 (28%)
Child/other family member	64 (19%)	0	64 (14%)
Other	27 (8%)	0	27 (6%)
Years in caregiver role	6.0 (6.5)	5.6 (2.9)	5.9 (5.7)	0.410
Person with TBI
Female gender	85 (25%)	0	85 (19%)	<0.001
Age (years)	42.4 (14.7)	36.1 (7.3)	40.7 (13.4)	<0.001
Time since injury (years)	6.9 (5.5)	8.6 (4.7)	7.4 (5.4)	0.003
Level of functioning (MPAI-4)
High functioning/low impairment	293 (87%)	57 46%)	350 (76%)	<0.001
Low functioning/high impairment	42 (13%)	63 (51%)	105 (23%)
Missing	0	3 (2%)	3 (1%)
Caregiver health-related quality of life
TBI-CareQOL
Caregiver strain	47.5 (9.8)	55.2 (7.5)	49.6 (9.8)	<0.001
Caregiver-specific anxiety	47.1 (9.3)	56.8 (8.0)	49.8 (9.9)	<0.001
Feeling trapped	46.5 (9.2)	57.2 (6.6)	49.4 (9.8)	<0.001
Feelings of loss-self	48.2 (9.8)	55.4 (7.5)	50.2 (9.8)	<0.001
Feelings of loss-person with TBI	49.6 (10.2)	52.9 (7.3)	50.5 (9.6)	<0.001
PROMIS
Anger	51.2 (9.8)	59.2 (9.4)	53.4 (10.3)	<0.001
Anxiety	52.4 (9.1)	61.3 (8.6)	54.8 (9.8)	<0.001
Depression	50.2 (9.6)	57.5 (9.7)	52.2 (10.1)	<0.001
Ability to participate in social roles and activities	51.9 (9.5)	43.3 (8.0)	49.6 (9.9)	<0.001
Satisfaction with social roles and activities	48.7 (9.0)	41.2 (6.9)	46.7 (9.1)	<0.001
Emotional support	49.7 (9.2)	44.4 (8.5)	48.3 (9.3)	<0.001
Informational support	50.0 (10.7)	46.3 (9.9)	49.0 (10.6)	<0.001
Social isolation	48.0 (9.4)	56.8 (9.3)	50.3 (10.1)	<0.001
Fatigue	51.8 (9.6)	59.5 (9.2)	53.9 (10.1)	<0.001
Sleep disturbance	51.3 (9.4)	59.7 (9.8)	53.6 (10.2)	<0.001

Notes: Entries in the table represent the number of participants (percentage), or the mean (SD).

a P-value: chi-squared test, Fisher’s exact test, or independent t-test for comparison of the caregiver groups, excluding missing data.

Abbreviations: GED, General Educational Development Test (High School Equivalency Diploma); HS, high school; MPAI-4, Mayo-Portland Adaptability Inventory-Fourth Edition; TBI, traumatic brain injury; SMV, service member/veteran; PROMIS, Patient-Reported Outcomes Measurement Information System.

Table 2 Survey evaluation and response burden, by caregiver type

	Caregivers of civilian TBI (n=335)	Caregivers of SMV TBI (n=123)	Total (n=458)	P-valuea
Study participation experience
A lot worse/a little worse than expected	21 (6%)	8 (6%)	29 (6%)	0.440
About the same as expected	149 (44%)	61 (50%)	210 (44%)
A little better than expected	87 (26%)	23 (19%)	110 (23%
A lot better than expected	78 (23%)	31 (25%)	109 (23%)
Would recommend this study to others	271 (81%)	115 (94%)	386 (84%)	0.002
Comments about study participation
None	164 (49%)	77 (63%)	241 (53%)	0.006
Type of comment
Positive	59 (35%)	19 (41%)	78 (36%)	0.321
Negative	82 (48%)	24 (52%)	106 (49%)
Psychological	20 (12%)	2 (4%)	22 (10%)
Other	10 (6%)	1 (2%)	11 (5%)
Overall rating of screen design
Poor/fair	32 (10%)	14 (11%)	46 (10%)	0.890
Good	122 (36%)	44 (36%)	166 (36%)
Very good	109 (32%)	43 (35%)	152 (33%)
Excellent	49 (15%)	22 (18%)	71 (16%)
Missing	23 (7%)	0	23 (5%)
Help using the computer or answering the questions
Not at all	266 (79%)	110 (89%)	376 (82%)	0.030
A little bit	27 (8%)	4 (3%)	31 (7%)
Some	15 (4%)	6 (5%)	21 (5%
A lot	27 (8%)	3 (2%)	30 (7%)
Time needed to complete the questionnaires
≤3 hours	229 (68%)	89 (72%)	318 (69%)	0.466
Minutes to complete the questionnairesb	78 (30)	71 (28)	76 (29)	0.070

Notes: Entries in the table represent the number of participants (percentage), or the mean (SD).

a P-value: chi-squared test, Fisher’s exact test, or independent t-test for comparison of the caregiver groups, excluding missing data;

b including only those who took 3 hours or less (n=318).

Abbreviations: TBI, traumatic brain injury; SMV, service member/veteran.

Table 3 Logistic regression models for evaluation/burden indicators

Dependent variable	Independent variable
	SMV vs civilian	More than HS education vs less	Non-Hispanic white vs other
Study participation experience: a little/a lot better than expected vs same/worse	–	0.51 (0.32, 0.82)	0.54 (0.36, 0.81)
Would recommend this study to others: yes/maybe vs no	3.40 (1.58, 7.31)	–	–
Help using the computer or answering the questions: some/a little/a lot vs not at all	–	0.44 (0.26, 0.75)	0.36 (0.22, 0.59)

Figure 1 Association between rating of study participation experience and open-ended comments (P<0.001).