Introduction
Methods
Participants
pTBI sample
General population sample
Instruments
Instrument | Outcome domain | Type | Response scale | Scales (# items) | Scores | Cut-offs applied |
---|---|---|---|---|---|---|
Quality of life after brain injury for children and adolescents (QOLIBRI-KID/ADO) [13] | TBI-specific HRQoL | Self-report | Five-point Likert-type (“Not at all” to “Very”) | Cognition (7) Self (5) Daily Life & Autonomy (7) Social Relationships (6) Emotions (4) Physical Problems (6) Total score (35) | 0 (lowest possible HRQoL) to 100 (highest possible HRQoL) | None |
Pediatric quality of life inventory (PedsQL™) [7] | Generic HRQoL | Self-report | Four-point Likert-type scale (“Never” to “Almost always”) | Emotional Functioning* (5) Social Functioning* (5) School Functioning* (5) Physical Functioning (8) Psychosocial Health Summary Score (sum of 15 items from the scales marked with *) Total score (23) | 0 (lowest possible HRQoL) to 100 (highest possible HRQoL) | None |
Generalized anxiety disorder 7 (GAD-7) [20] | Generalized anxiety disorder | Proxy-report | Four-point Likert-type scale (“Not at all” to “Nearly every day”) | Total score (7) | 0 (no anxiety) to 21 (severe anxiety) | 0–4 (no/minimal anxiety) vs. 5–21 (mild to severe anxiety) [21] |
Patient health questionnaire 9 (PHQ-9) [22] | Major depression | Proxy-report | Four-point Likert-type scale (“Not at all” to “Nearly every day”) | Total score (9) | 0 (no depression) to 27 (severe depression) | 0–4 (no/minimal depression) vs. 5–27 (mild to severe depression) [23] |
Postconcussion symptoms inventory—self-report (PCSI-SR8) [24] | Post-concussion symptoms | Self-report | Three-point Guttman response scale (“No problem” to “A lot of problem”) | Physical (8) Emotional (3) Cognitive (4) Sleep/fatigue (2) Total score (17) | 0 (no symptoms) to 34 (maximum symptom intensity) | Below, above or within the mean range (M ± 1 SD)1 |
Postconcussion symptoms inventory—self-report (PCSI-SR13) [24] | Post-concussion symptoms | Self-report | Seven-point Guttman scale with three anchors (“'No problem”, “Moderate problem”, “Severe problem”) | Physical (8) Emotional (4) Cognitive (6) Sleep/fatigue (3) Total score (21) | 0 (no symptoms) to 126 (maximum symptom intensity) | Below, above or within the mean range (M ± 1 SD)a |
Rey auditory verbal learning test | Ability to learn and remember verbal information | Performance-based | – | - (15 Words) | 0 (no words recalled) to 15 (all words recalled) for each trial | Difference between number of words recalled in trial I and the number of words recalled in trial V classified as above, below, or within range based on the mean range (M ± 1SD) of the corresponding age group (i.e., 8–12 years and 13–17 years)1 |
Sociodemographic and health-related information
Statistical analyses
Results
Participants
Variable | Group/value | pTBI sample (N = 297) | General population sample (N = 1997) | pd |
---|---|---|---|---|
Sex/gender | Female | 136 (45.8%) | 1007 (50.4%) | 0.151 |
Male | 161 (54.2%) | 989 (49.5%) | ||
Diverse | 0 (0%) | 1 (0.1%) | ||
Age (years) | M (SD) | 12.6 (2.67) | 12.4 (2.85) | 0.135 |
Mdn [Min, Max] | 12.4 [8.00, 17.9] | 12.0 [8.00, 17.0] | ||
Study settinga | Online | 177 (59.6%) | 1997 (100%) | N/A |
Offline | 120 (40.4%) | – | ||
Education | None | 3 (1.0%) | 6 (0.3%) | N/A |
Pre-school | 2 (0.7%) | – | ||
Primary school | 78 (26.3%) | 556 (27.8%) | ||
Special school | 2 (0.7%) | 83 (4.2%) | ||
Vocational school | – | 78 (3.9%) | ||
Secondary school | 7 (2.4%) | 119 (6.0%) | ||
Secondary/middle school | 41 (13.8%) | 533 (26.7%) | ||
Preparatory high school | – | 592 (29.6%) | ||
High school | 155 (52.2%) | – | ||
Missing or not assignable | 9 (3.0%) | 30 (1.5%) | ||
Injury cause | Traffic accident | 31 (10.4%) | – | N/A |
Fall | 214 (72.1%) | – | ||
Collision with persons/objects (other than vehicles) | 44 (14.8%) | – | ||
Violence/suicide attempt | 2 (0.7%) | – | ||
Other cause | 5 (1.7%) | – | ||
Missing | 1 (0.3%) | – | ||
Chronic health conditionsb | Yes | 43 (14.5%) | 249 (12.5%) | |
No | 253 (85.2%) | 1748 (87.5%) | ||
Missing | 1 (0.3%) | – | ||
TBI severity | Mild | 237 (79.8%) | – | N/A |
Moderate | 30 (10.1%) | – | ||
Severe | 30 (10.1%) | – | ||
Cerebral Lesion(s) found in neuroimagingc | Yes | 73 (24.6%) | – | N/A |
No | 224 (75.4%) | – | ||
Missing | 0 (0%) | – | ||
Recovery (KOSCHI) | 4b | 15 (5.1%) | – | N/A |
5a | 21 (7.1%) | – | ||
5b | 258 (86.9%) | – | ||
Missing | 3 (1.0%) | – | ||
Time since injury in years | M (SD) | 5.36 (2.70) | – | N/A |
Mdn [Min, Max] | 5.29 [0.457, 9.95] | – | ||
Head-/aches, Physical impairments, or mental health problems after TBI | Yes | 145 (48.8%) | – | N/A |
No | 150 (50.5%) | – | ||
Missing | 2 (0.7%) | – | ||
QOLIBRI-OS-KID/ADO (Self-report) | Mean (SD) | 82.3 (13.7) | 77.6 (16.7) | |
Mdn [Min, Max] | 83.3 [20.8, 100] | 79.2 [0, 100] | < 0.001 | |
Learning rate (RAVLT) | Below average (≤ M − 1SD) | 57 (19.2%) | – | N/A |
Average | 174 (58.6%) | – | ||
Above average (≥ M + 1SD) | 65 (21.9%) | – | ||
Missing | 1 (0.3%) | – | ||
GAD-7 (Proxy-report) | No depression (0) | 45 (15.2%) | – | N/A |
Minimal depression (1–4) | 164 (55.2%) | – | ||
Mild to severe depression (≥ 5) | 87 (29.3%) | – | ||
Missing | 1 (0.3%) | – | ||
PHQ-9 (Proxy-report) | No depression (0) | 33 (11.1%) | – | N/A |
Minimal depression (1–4) | 175 (58.9%) | – | ||
Mild to severe depression (≥ 5) | 88 (29.6%) | – | ||
Missing | 1 (0.3%) | – | ||
PCSI-SR8/13 (Self-report) | Below average (≤ M − 1SD) | 26 (8.8%) | – | N/A |
Average | 221 (74.4%) | – | ||
Above average (≥ M + 1SD) | 47 (15.8%) | – | ||
Missing | 3 (1.0%) | – |
Item characteristics, reliability, and DIF analyses
Item responses and characteristics | Reliability | DIF analyses | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Sample | Item | Not at all | Slightly | Moderately | Quite | Very | M (SD) | SK | Cronbach’s αª | McDonald’s ω | α if item omittedª | CITC | p | McFadden’s R2 |
pTBI Sample | Physical problems | 2 (0.7%) | 6 (2.0%) | 17 (5.7%) | 84 (28.3%) | 188 (63.3%) | 4.52 (0.75) | − 1.82 | 0.75 | 0.81 | 0.39 | 0.47 | 0.013 | 0.016 |
Cognition | 2 (0.7%) | 15 (5.1%) | 53 (17.8%) | 131 (44.1%) | 96 (32.3%) | 4.02 (0.88) | − 0.74 | 0.56 | 0.65 | 0.865 | < 0.001 | |||
Emotions | 5 (1.7%) | 20 (6.7%) | 62 (20.9%) | 128 (43.1%) | 82 (27.6%) | 3.88 (0.95) | − 0.72 | 0.55 | 0.63 | 0.577 | 0.001 | |||
Autonomy | 1 (0.3%) | 2 (0.7%) | 17 (5.7%) | 45 (15.2%) | 232 (78.1%) | 4.70 (0.64) | − 2.38 | 0.42 | 0.49 | 0.029 | 0.017 | |||
Social aspects | 1 (0.3%) | 5 (1.7%) | 32 (10.8%) | 102 (34.3%) | 157 (52.9%) | 4.38 (0.77) | − 1.15 | 0.49 | 0.55 | 0.290 | 0.004 | |||
Future prospects | 5 (1.7%) | 9 (3.0%) | 34 (11.4%) | 109 (36.7%) | 140 (47.1%) | 4.25 (0.89) | − 1.32 | 0.55 | 0.63 | 0.813 | 0.001 | |||
General population sample | Physical problems | 17 (0.9%) | 75 (3.8%) | 275 (13.8%) | 657 (32.9%) | 973 (48.7%) | 4.20 (0.89) | − 1.12 | 0.85 | 0.86 | 0.83 | 0.62 | 0.011 | 0.002 |
Cognition | 31 (1.6%) | 106 (5.3%) | 375 (18.8%) | 854 (42.8%) | 631 (31.6%) | 4.00 (0.92) | − 0.83 | 0.82 | 0.63 | 0.012 | 0.002 | |||
Emotions | 31 (1.6%) | 93 (4.7%) | 411 (20.6%) | 886 (44.4%) | 576 (28.8%) | 3.90 (0.9) | − 0.77 | 0.81 | 0.68 | 0.394 | < 0.001 | |||
Autonomy | 13 (0.7%) | 44 (2.2%) | 228 (11.4%) | 647 (32.4%) | 1065 (53.3%) | 4.40 (0.82) | − 1.26 | 0.83 | 0.60 | < 0.001 | 0.004 | |||
Social aspects | 25 (1.3%) | 80 (4.0%) | 326 (16.3%) | 807 (40.4%) | 759 (38.0%) | 4.10 (0.90) | − 0.94 | 0.83 | 0.60 | 0.078 | 0.001 | |||
Future prospects | 29 (1.5%) | 67 (3.4%) | 378 (18.9%) | 918 (46.0%) | 605 (30.3%) | 4.00 (0.87) | − 0.84 | 0.82 | 0.66 | < 0.001 | 0.003 |
Validity
Instrument | Scale | n | r | R2 (%) |
---|---|---|---|---|
QOLIBRI-KID/ADO | Cognition | 297 | 0.69 | 48 |
Self | 295 | 0.75 | 56 | |
Daily life & autonomy | 297 | 0.76 | 58 | |
Social relationships | 297 | 0.71 | 50 | |
Emotions | 297 | 0.45 | 20 | |
Physical problems | 297 | 0.50 | 25 | |
Total score | 295 | 0.82 | 67 | |
PedsQL | Emotional functioning | 297 | 0.60 | 36 |
Social functioning | 296 | 0.52 | 27 | |
School functioning | 296 | 0.65 | 42 | |
Physical functioning | 296 | 0.73 | 53 | |
Psychosocial functioning | 297 | 0.60 | 36 | |
Total score | 296 | 0.74 | 55 | |
GAD-7 (Proxy) | Total score | 296 | − 0.29 | 8 |
PHQ-9 (Proxy) | Total score | 296 | − 0.43 | 18 |
PCSI-SR8/SR13 | Total score | 294 | − 0.56 | 31 |
Variable | Group | n | M | SD | t | df | p | d |
---|---|---|---|---|---|---|---|---|
Age group | Adolescents | 131 | 79.33 | 15.02 | − 3.34 | 295 | < 0.001 | − 0.39 |
Children | 166 | 84.59 | 12.12 | |||||
Sex | Female | 136 | 81.28 | 14.50 | − 1.14 | 295 | 0.127 | − 0.13 |
Male | 161 | 83.10 | 12.98 | |||||
Time since injury | < 4 Years | 99 | 80.85 | 14.51 | − 1.26 | 295 | 0.104 | − 0.16 |
4–10 Years | 198 | 82.98 | 13.26 | |||||
TBI severity | Moderate-to-severe TBI | 60 | 81.39 | 15.79 | − 0.56 | 295 | 0.290 | − 0.08 |
Mild TBI | 237 | 82.49 | 13.15 | |||||
Recovery (KOSCHI)* | Incomplete recovery (KOSCHI < 5) | 15 | 70.83 | 19.92 | – | – | – | – |
Good recovery (KOSCHI = 5) | 279 | 82.86 | 13.07 | |||||
(Head)aches, physical impairment, or mental health problems after TBI | Yes | 145 | 79.54 | 15.11 | − 3.32 | 293 | 0.001 | − 0.39 |
No | 150 | 84.75 | 11.68 | |||||
Learning rate (RAVLT) | Below average (≤ M − 1SD) | 57 | 82.16 | 15.20 | − 0.03 | 294 | 0.489 | < 0.01 |
Average and above | 239 | 82.22 | 13.33 | |||||
GAD-7 (Proxy-report) | Mild to severe anxiety (> 4) | 87 | 77.39 | 15.79 | − 4.03 | 294 | < 0.001 | − 0.51 |
No to minimal anxiety (0–4) | 209 | 84.27 | 12.25 | |||||
PHQ-9 (Proxy-report) | Mild to severe depression (> 4) | 88 | 76.09 | 16.10 | − 5.25 | 294 | < 0.001 | − 0.67 |
No to minimal depression (0–4) | 208 | 84.86 | 11.68 | |||||
PCSI-SR8/-SR13 (Self-report) | Above average (≥ M + 1SD) | 47 | 69.50 | 14.31 | − 8.17 | 292 | < 0.001 | − 1.30 |
Average and less | 247 | 85.05 | 11.47 |
Measurement invariance
Constraints | χ2 (df) | p | χ2/df | CFI | TLI | RMSEA [90% CI] | SRMR | χ2 (df) | Δ χ2 | Δ df | p |
---|---|---|---|---|---|---|---|---|---|---|---|
Baseline | 123.17 (18) | < 0.001 | 6.84 | 0.99 | 0.98 | 0.071 [0.060, 0.084] | 0.031 | 67.176 (18) | – | – | – |
Thresholds | 123.13 (30) | < 0.001 | 4.10 | 0.99 | 0.99 | 0.052 [0.043, 0.062] | 0.031 | 72.090 (30) | 7.759 | 12 | 0.804 |
Thresholds and loadings | 108.35 (35) | < 0.001 | 3.10 | 0.99 | 0.99 | 0.043 [0.034, 0.052] | 0.032 | 76.960 (35) | 5.248 | 5 | 0.386 |
Reference values
Low HRQoL | − 1 SD | Mdn | + 1 SD | High HRQoL | |||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Gender | Age | N | 2.5% | 5% | 16% | 30% | 40% | 50% | 60% | 70% | 85% | 95% | 97.5% |
Male | 8–12 | 462 | 48 | 50 | 66 | 71 | 75 | 79 | 83 | 88 | 96 | 100 | 100 |
13–17 | 401 | 42 | 50 | 67 | 75 | 79 | 83 | 83 | 88 | 96 | 100 | 100 | |
Female | 8–12 | 463 | 46 | 50 | 67 | 75 | 75 | 83 | 83 | 88 | 96 | 100 | 100 |
13–17 | 422 | 40 | 50 | 62 | 71 | 75 | 79 | 83 | 88 | 96 | 100 | 100 | |
Total sample | 8–17 | 1748 | 42 | 50 | 62 | 71 | 75 | 79 | 83 | 88 | 96 | 100 | 100 |