A longitudinal follow-up study of parent-reported family impact and quality of life in young patients with traumatic and non-traumatic brain injury

Figures & data

Figure 1. Flow chart of the participants in this study.

Flow chart of participants: parents of young patients with acquired brain injury in the outpatient rehabilitation setting.

Table 1. Demographic, injury, and family characteristics in children, adolescents, and young adults with TBI/nTBI, referred to outpatient rehabilitation, at baseline.

Demographic characteristics	Total Group n = 246	TBI group n = 181 (74%)	nTBI group n = 65 (26%)
Sex; n (%)
Female	127 (52%)	99 (54%)	29 (45%)
Age (years) at referral; median (IQR)	14 (11–16)	15 (12–16)	13 (10–16)
5–11 years old; n (%)	76 (29%)	48 (24%)	32 (43%)
12–17 years old; n (%)	134 (56%)	103 (59%)	27 (48%)
18–24 years old; n (%)	36 (15%)	30 (17%)	6 (9%)
Time(months) between the onset & referral to rehabilitation;
Median (range)	4.0 (1–21)	3.0 (1–10)	16.0 (3–46)
More than (>) 6 months; n (%)	96 (40%)	56 (31%)	25 (40%)
Injury characteristics		TBI group n = 181 (74%)	nTBI group n = 65 (26%)
Severity levels of TBI (based on GCS^a); n (%)
Mild		143 (78%)
Moderate-severe		18 (10%)
Unknown^b		20 (12%)
Causes nTBI; n (%)
Brain tumor			25 (40%)
Stroke			15 (24%)
Hypoxia/intoxication			2 (3%)
Encephalitis/meningitis			11 (18%)
Other			9 (15%)
Family characteristics	Total Group n = 246	TBI group n = 181 (74%)	nTBI group n = 65 (26%)
Single-parent household; n (%)
Yes	42 (17%)	28 (15%)	15 (23%)
Having (a) sibling(s); n (%)
Yes	214 (87%)	160 (88%)	54 (84%)
Cultural background parents; n (%)
Non-Dutch	28 (11%)	20 (11%)	8 (12%)
Educational level parents; n (%) ^#
Low	28 (11%)	20 (11%)	8 (12%)
Intermediate	108 (44%)	79 (43%)	29 (44%)
High	110 (45%)	81 (46%)	29 (44%)

TBI: traumatic brain injury; nTBI: non-traumatic brain injury.

^aGlasgow Coma Scale (GCS). ^bIf the GCS was unknown but there was no history of conscious loss (which was the case), the severity level was also considered ‘mild’. #Educational level parents, low: prevocational practical education or less, intermediate: prevocational theoretical education and upper secondary vocational education, high: secondary education, higher education, and university level education).

Table 2. Differences in parent reported family impact and patients’ Health related quality of life between patients with TBI and nTBI at baseline and one and two years later.

Family impact^a	Cause	n	Baseline Mean (SD)	MD	t-value (Df)	p Value	n	T1 Mean (SD)	MD	t-value (Df)	p Value	n	T2 Mean (SD)	MD	t-value (Df)	p Value
Total score	TBI	181	73.8 (16.2)	8.2	3.6 (116)	<0.001	48	74.5 (16.5)	7.6	2.1 (55)	0.04	53	75.9 (14.8)	9.4	2.4 (32)	0.02
	nTBI	65	65.6 (15.7)				23	66.8 (12.8)				19	66.5 (14.8)
Worrying	TBI	181	66.9 (18.8)	10.7	3.8 (110)	<0.001	48	66.0 (18.5)	7.1	1.7 (49)	0.04	53	69.1 (14.3)	9.8	2.5 (30)	0.01
	nTBI	65	56.2 (19.5)				23	58.9 (16.1)				19	59.2 (15.2)
Com-munication	TBI	181	80.7 (21.9)	11.3	3.3 (103)	0.001	48	81.9 (23.3)	16.3	2.8 (43)	0.004	53	84.4 (19.9)	21.7	3.7 (28)	<0.001
	nTBI	65	69.4 (24.3)				23	65.6 (23.5)				19	62.7 (22.8)
Family functioning ss	TBI	181	75.3 (19.1)	8.4	3.0 (113)	0.003	48	76.3 (18.5)	10.3	2.4 (49)	0.01	53	78.8 (17.7)	12.1	2.3 (29)	0.01
	nTBI	65	66.9 (19.1)				23	66.0 (16.2)				19	66.6 (19.9)
Parental HRQoL ss	TBI	181	73.9 (18.0)	7.1	2.9 (121)	0.004	48	74.8 (18.8)	5.5	1.4 (57)	0.08	53	75.1 (17.4)	6.3	1.5 (36)	0.07
	nTBI	65	66.8 (16.7)				23	69.3 (13.7)				19	68.8 (15.2)
HRQoL^a	Cause	n	Baseline Mean (SD)	MD	t-value (Df)	p Value	n	T1 Mean (SD)	MD	t-value (Df)	p Value	n	T2 Mean (SD)	MD	t-value (Df)	p Value
Total score	TBI	181	61.9 (16.9)	1.9	0.8 (110)	0.21	48	72.5 (16.5)	5.3	1.4 (47)	0.09	53	73.8 (18.4)	6.3	1.5 (37)	0.08
	nTBI	65	60.0 (17.3)				23	67.2 (12.8)				19	67.5 (15.4)
Physical functioning	TBI	181	64.6 (20.9)	0.7	0.2 (93)	0.42	48	77.4 (17.5)	3.0	0.7 (43)	0.25	53	77.1 (22.9)	3.4	0.6 (31)	0.29
	nTBI	65	63.9 (26.8)				23	74.4 (16.8)				19	73.7 (15.2)
Emotional functioning	TBI	181	60.4 (22.9)	5.5	1.8 (123)	0.04	48	66.2 (20.3)	6.7	1.1 (36)	0.14	53	68.5 (24.1)	7.4	1.3 (37)	0.10
	nTBI	65	54.9 (20.9)				23	59.5 (24.7)				19	61.1 (20.4)
Social functioning	TBI	181	74.9 (20.8)	5.5	1.8 (112)	0.04	48	82.0 (21.2)	10.0	2.0 (50)	0.02	53	81.6 (18.7)	11.9	2.1 (27)	0.02
	nTBI	65	69.4 (20.9)				23	72.0 (17.4)				19	69.7 (22.0)
School/work functioning	TBI	181	46.2 (25.2)	2.7	−0.8 (136)	0.19	48	61.6 (21.8)	3.2	0.6 (45)	0.28	53	66.2 (23.8)	4.4	0.9 (47)	0.19
	nTBI	65	48.9 (20.7)				23	58.4 (20.0)				19	61.8 (15.2)

^aThe Pediatric Quality of Life Inventory™Family Impact Module (PedsQL™FIM) and the Pediatric Quality of Life Inventory™Generic Core Scales-4.0 (PedsQL™GCS-4.0). MD: Mean difference. t-value (Df): values of independent sample t-tests and degrees of freedom. p-values in grey boxes are <0.05 and statistically significant. Family functioning ss: family functioning summary score, Parental HRQoL ss: parental HRQoL summary score.

Table 3. Parent-reported family impact over the course of time.

Total group
PedsQL™FIM^1	Baseline n = 246 Mean (SD)	Baseline–T1 Change Score (95% CI)^#	T1–T2 Change Score (95% CI)^#	Baseline–T2 Change Score (95% CI)^#
Total score	71.7 (16.4)	+2.2 (−2.3, 6.7)	+1.7 (−4.1, 7.5)	+3.9 (−0.9, 8.7)
Worrying	64.1 (19.5)	+6.9 (1.5, 12.3)*	+3.0 (−9.8, 3.8)	+9.9 (4.5, 15.3)**
Communication	77.7 (23.0)	−3.5 (−9.8, 2.8)	+2.3 (−6.0, 10.7)	−1.2 (−8.1, 5.8)
Family functioning summary score	73.1 (19.4)	−0.1 (−5.7, 5.4)	+2.9 (−4.2, 10.1)	+2.8 (−2.9, 8.6)
Parental HRQoL summary score	72.0 (17.9)	+2.8 (−1.9, 7.4)	+0.8 (−5.1, 6.7)	+3.6 (−1.3, 8.5)
TBI group
PedsQL™FIM^1	Baseline n = 181 Mean (SD)	Baseline–T1 Change Score (95% CI)^#	T1–T2 Change Score (95% CI)^#	Baseline–T2 Change Score (95% CI)^#
Total score	73.8 (16.2)	+2.8 (−2.6, 8.2)	+0.4 (−6.6, 7.5)	+3.2 (−2.6, 9.0)
Worrying	66.9 (18.8)	+6.4 (−0.3, 13.1)	+2.2 (−6.1, 10.6)	+8.6 (2.1, 15.1)*
Communication	80.7 (21.9)	−3.4 (−11.0, 4.1)	+0.5 (−9.7, 10.6)	−2.9 (−11.3, 5.4)
Family functioning summary score	75.3 (19.1)	+1.2 (−5.4, 7.9)	+1.9 (−6.6, 10.4)	+3.1 (−3.6, 9.9)
Parental HRQoL summary score	73.9 (18.0)	+3.4 (−2.2, 9.0)	−0.6 (−7.7, 6.5)	+2.8 (−3.1, 8.7)
nTBI group
PedsQL™FIM^1	Baseline n = 65 Mean (SD)	Baseline–T1 Change Score (95% CI)^#	T1–T2 Change Score (95% CI)^#	Baseline–T2 Change Score (95% CI)^#
Total score	65.6 (15.7)	+2.3 (−5.3, 9.9)	+3.2 (6.8, 13.2)	+5.5 (3.3, 13.2)
Worrying	56.2 (19.5)	+10.0 (1.0, 18.9)*	+3.6 (−7.8, 14.8)	+13.6 (3.6, 23.5)*
Communication	69.4 (24.3)	−1.6 (−12.8, 9.6)	+5.3 (−8.8, 19.5)	+3.7 (−8.9, 16.3)
Family functioning summary score	66.9 (19.1)	−1.7 (−11.3, 7.9)	+2.9 (−10.2, 15.9)	+1.2 (−10.3, 12.7)
Parental HRQoL summary score	66.8 (16.7)	+2.6 (−5.3, 10.6)	+2.9 (−7.3, 13.2)	+5.5 (−3.4, 13.2)

1: Pediatric Quality of Life Inventory™Family Impact Module (FIM). ^#Based on the linear mixed model, corrected for age and sex. *p-value <0.05, **p-value <0.001; Baseline: at referral to rehabilitation; T1: 1-year follow-up; T2: 2-year follow-up. Outcomes at baseline are expressed as estimated means with standard deviations (SD) and at T1 and T1 as change scores with 95% confidence intervals for difference (95% CI). Lower total scores (and domain scores) mean more family impact.

Table 4. Parent-reported Health-Related Quality of Life (HRQoL) for their child over the course of time.

Total group
PedsQL™GCS-4.0^1	Baseline n = 246 Mean (SD)	Baseline–T1 Change Score (95% CI)^#	T1–T2 Change Score (95% CI)^#	Baseline–T2 Change Score (95% CI)^#
Total score	61.4 (17.0)	+9.6 (5.1, 14.0)**	+1.4 (-4.3, 7.0)	+11.0 (6.3, 15.6)**
Physical functioning	64.4 (22.6)	+12.4 (7.3, 17.4)**	−0.3 (-6.9, 6.4)	+12.1 (6.0, 18.0)**
Emotional functioning	58.9 (22.5)	+5.2 (-0.8, 11.3)	+2.6 (-4.9, 10.1)	+7.8 (1.7, 13.9)*
Social functioning	73.4 (20.9)	+5.7 (0.1, 11.4)*	−0.2 (-6.9, 6.6)	+5.5 (0.2, 10.9)*
School/work functioning	46.9 (24.1)	+13.2 (7.3, 19.2)**	+4.5 (-2.8, 11.7)	+17.7 (11.7, 23.7)**
TBI group
PedsQL™GCS-4.0^1	Baseline n = 181 Mean (SD)	Baseline–T1 Change Score (95% CI)^#	T1–T2 Change Score (95% CI)^#	Baseline–T2 Change Score (95% CI)^#
Total score	61.9 (16.9)	+10.8 (5.2, 16.4)**	+1.1 (−5.9, 8.1)	+11.9 (6.4, 17.5)**
Physical functioning	64.6 (20.9)	+13.3 (7.2, 19.3)**	−0.6 (−8.7, 7.5)	+12.7 (5.7, 19.6)**
Emotional functioning	60.4 (22.9)	+5.9 (−1.1, 12.9)	+2.2 (−6.7, 11.1)	+8.1 (0.9, 15.5)*
Social functioning	74.9 (20.8)	+7.5 (0.4, 14.6)*	−0.5 (−8.6, 7.5)	+7.0 (1.1, 12.8)*
School/work functioning	46.2 (25.2)	+14.9 (7.6, 22.2)**	+4.5 (−4.6, 13.7)	+19.4 (11.9, 27.0)**
nTBI group
PedsQL™GCS−4.0^1	Baseline n = 65 Mean (SD)	Baseline–T1 Change Score (95% CI)^#	T1–T2 Change Score (95% CI)^#	Baseline–T2 Change Score (95% CI)^#
Total score	60.0 (17.3)	+7.6 (0.1, 15.0)*	+0.5 (−9.0, 10.0)	+8.1 (−0.6, 16.7)
Physical functioning	63.9 (26.8)	+10.8 (1.1, 20.5)*	−0.6 (−13.3, 12.2)	+10.2 (−2.4, 22.9)
Emotional functioning	54.9 (20.9)	+4.6 (−7.5, 16.7)	+1.5 (−12.9, 15.9)	+6.1 (−5.1, 17.3)
Social functioning	69.4 (20.9)	+3.2 (−5.7, 12.2)	−1.8 (−14.6, 10.9)	+1.4 (−10.6, 13.4)
School/work functioning	48.9 (20.7)	+9.6 (−0.6, 19.8)	+3.5 (−7.9, 14.0)	+13.1 (3.8, 22.5)*

1: The Pediatric Quality of Life Inventory™Generic Core Scales-4.0 (PedsQL™GCS-4.0). #Based on the linear mixed model, corrected for age and sex. *p-value <0.05, **p-value <0.001; Baseline: at referral to rehabilitation; T1: 1-year follow-up; T2: 2-year follow-up. Outcomes at baseline are expressed as estimated means with standard deviations (SD) and at T1 and T1 as change scores with 95% confidence intervals for difference (95% CI). Lower total scores (and domain scores) mean lower HRQoL.

Figure 2. (a) Longitudinal correlation between Family impact (PedsQL™FIM) and HRQoL (PedsQL™GCS-4.0) in the total group. LEGEND: PedsQL™FIM: Pediatric Quality of Life Inventory™Family Impact Module. PedsQL™GCS-4.0: Pediatric Quality of Life Inventory™Generic Core Scales-4.0. * Correlation coefficient (r): very strong = > 0.8; moderately strong = 0.6 to 0.8; fair = 0.3 to 0.5; and poor = < 0.3. # p-value <0.05 = statistically significant. Df: Degrees of freedom, 95%CI = 95% Confidence Interval. Analyses were corrected for age and sex. (b) Longitudinal correlation between Family impact (PedsQL™FIM) and HRQoL (PedsQL™GCS-4.0) in the TBI group. LEGEND: PedsQL™FIM: Pediatric Quality of Life Inventory™Family Impact Module. PedsQL™GCS-4.0: Pediatric Quality of Life Inventory™Generic Core Scales-4.0. TBI: Traumatic brain injury. * Correlation coefficient (r): very strong = > 0.8; moderately strong = 0.6 to 0.8; fair = 0.3 to 0.5; and poor = < 0.3. # p-value <0.05 = statistically significant. Df: Degrees of freedom, 95%CI = 95% Confidence Interval. Analyses were corrected for age and sex. (c) Longitudinal correlation between Family impact (PedsQL™FIM) and HRQoL (PedsQL™GCS-4.0) in the nTBI group. LEGEND: PedsQL™FIM: Pediatric Quality of Life Inventory™Family Impact Module. PedsQL™GCS-4.0: Pediatric Quality of Life Inventory™Generic Core Scales-4.0. nTBI: Non-traumatic brain injury. * Correlation coefficient (r): very strong = > 0.8; moderately strong = 0.6 to 0.8; fair = 0.3 to 0.5; and poor = < 0.3. # p-value <0.05 = statistically significant. Df: Degrees of freedom, 95%CI = 95% Confidence Interval. Analyses were corrected for age and sex.

Longitudinal correlation between family impact and health-related quality of life scores from families of young patients with acquired brain injury (ABI) in the outpatient rehabilitation setting. Longitudinal correlation between family impact and health-related quality of life scores from families of young patients with traumatic brain injury (TBI) in the outpatient rehabilitation setting. Longitudinal correlation between family impact and health-related quality of life scores from families of young patients with non-traumatic brain injury (nTBI) in the outpatient rehabilitation setting.