Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort

Figures & data

Table 1. Patient characteristics of AYAs with ABI referred for outpatient rehabilitation treatment.

	Patients n = 64	TBI n = 47	NTBI n = 17
Sex, male, n (%)	32 (50)	21 (45)	11 (65)
Age at injury, years; median (IQR)	16.3 (14.6, 18.3)	17.2 (15.6, 18.7)	15.0 (9.3, 17.0)
Time since injury, years; median (IQR)	0.8 (0.2, 2.3)	0.6 (0.2, 1.4)	2.4 (0.3, 7.0)
Age at admission, years; median (IQR)	17.6 (16.2, 20.0)	17.7 (16.0, 20.8)	17.4 (16.1, 18.4)
under 18 years, n (%)	38 (59)	26 (55)	12 (70)
18 years and older, n (%)	26 (41)	21 (45)	5 (30)
Severity of injury, n (%)
mild		37 (79)
moderate/severe		8 (17)
unknown		2 (4)

TBI = traumatic brain injury, NTBI = non-traumatic brain injury

IQR = interquartile range

Severity of injury based on Glasgow Coma Scale, 13–15 is mild, 9–12 is moderate, 8 and under is severe injury.

Table 2. Patient- and parent-reported fatigue, participation and quality of life outcomes in a cohort of AYAs with ABI referred to an outpatient rehabilitation clinic.

		median (IQR)
		Patients, n = 59	Parents, n = 54	number of pairs	ICC2,1
PedsQL^TM MFS	Total Score	44.4 (34.7, 59.7)	47.9 (36.1, 63.9)	50	0.64
	General fatigue	45.8 (29.2, 66.7)	44.4 (25.0, 62.5)*	50	0.66
	Score sleep/rest fatigue	50.0 (41.7, 62.5)	54.2 (39.6, 68.8)	49	0.52
	Cognitive fatigue	41.7 (25.0, 58.3)	43.8 (25.0, 70.8)	50	0.64
CASP	Total Score	82.5 (68.8, 92.3)	91.1 (80.0, 96.9)*	49	0.54
	Home participation	87.5 (75.0, 100.0)	93.8 (86.9, 100.0)*	49	0.44
	Community participation	75.0 (50.0, 100.0)	89.6 (75.0, 100.0)**	49	0.55
	School participation	85.0 (65.0, 95.0)	90.0 (80.0, 100.0)*	38	0.40
	Home & community living activities	85.0 (69.7, 94.1)	88.8 (78.8, 100.0)*	48	0.30
PedsQL^TM Generic Core Scales	Total Score	63.0 (47.8, 78.3)	63.6 (46.7, 75.3)	50	0.78
	Physical functioning	62.5 (50.0, 90.6)	64.1 (43.8, 82.0)	50	0.75
	Emotional functioning	60.0 (45.0, 85.0)	60.0 (40.0, 81.3)	50	0.68
	Social functioning	80.0 (60.0, 95.0)	75.0 (60.0, 100.0)	50	0.60
	School functioning	45.0 (30.0, 65.0)	45.0 (27.5, 67.5)	49	0.72

*p < .05, **p < .001; Wilcoxon signed-rank test for nonparametric data outcomes, for differences between patient- and parent-reported outcomes.

Fifty patient-parent pairs (37 traumatic brain injury and 13 non-traumatic brain injury) were used for this analysis.

PedsQL^TM Multidimensional Fatigue Scale (MFS), 0–100, with lower scores indicating more fatigue.

Child and Adolescent Scale of Participation (CASP), 0–100 with lower scores indicating more participation restrictions.

PedsQL^TM Generic Core Scales (0–100), with lower scores indicating the diminished health-related quality of life.

ICC_2,1; Intraclass Correlation Coefficients, absolute agreement, single measures.

Table 3. Patient-reported outcomes: the association between fatigue and participation and quality of life in AYAs with ABI, adjusted for sex, age at admission and type of injury.

		CASP
		Total Score	Home participation	Community participation	School participation	Home & community activities
		β (95%CI)
PedsQL^TM MFS	Total Score	0.64 (0.44, 0.85)**	0.52 (0.33, 0.72)**	0.73 (0.43, 1.04)**	0.65 (0.34, 0.96)**	0.68 (0.43, 0.92)**
	General fatigue	0.51 (0.35, 0.68)**	0.45 (0.30, 0.60)**	0.63 (0.39, 0.87)**	0.58 (0.33, 0.83)**	0.49 (0.29, 0.70)**
	Sleep/rest fatigue	0.46 (0.21, 0.71)**	0.37 (0.14, 0.60)**	0.44 (0.08, 0.80)*	0.53 (0.20, 0.86)*	0.51 (0.23, 0.80)**
	Cognitive fatigue	0.36 (0.19, 0.53)**	0.27 (0.11, 0.43)**	0.42 (0.18, 0.66)**	0.31 (0.05, 0.56)*	0.41 (0.22, 0.61)**
		PedsQL^TM Generic Core Scales
		Total Score	Physical functioning	Emotional functioning	Social functioning	School functioning
		β (95%CI)
PedsQL^TM MFS	Total Score	0.87 (0.72, 1.02)**	0.90 (0.65, 1.14)**	0.90 (0.61, 1.18)**	0.63 (0.39, 0.87)**	1.05 (0.82, 1.29)**
	General fatigue	0.69 (0.56, 0.81)**	0.76 (0.58, 0.94)**	0.72 (0.50, 0.95)**	0.48 (0.29, 0.67)**	0.75 (0.53, 0.96)**
	Sleep/rest fatigue	0.65 (0.42, 0.88)**	0.76 (0.47, 1.05)**	0.52 (0.16, 0.88)*	0.46 (0.19, 0.74)**	0.80 (0.48, 1.11)**
	Cognitive fatigue	0.49 (0.33, 0.64)**	0.41 (0.19, 0.64)**	0.56 (0.33, 0.79)**	0.37 (0.18, 0.55)**	0.65 (0.45, 0.86)**

Linear regression analyses with data represented as β-estimates (95% confidence interval, 95%CI) with CASP and PedsQL^TM Generic Core Scales (dependent variables) and MFS (independent variables) adjusted for sex, age at admission (18 or >18) and type of injury (TBI/NTBI).

*p < .05; **p < .001

PedsQL^TM Multidimensional Fatigue Scale (MFS), 0–100, with lower scores indicating more fatigue.

Child and Adolescent Scale of Participation (CASP), 0–100 with lower scores indicating more participation restrictions.

PedsQL^TM Generic Core Scales, 0–100, with lower scores indicating the diminished health-related quality of life.

Table 4. Parent-reported outcomes: the association between fatigue and participation and quality of life in AYAs with ABI, adjusted for sex, age at admission and type of injury.

		CASP
		Total Score	Home participation	Community participation	School participation	Home & community activities
		β (95%CI)
PedsQL^TM MFS	Total Score	0.32 (0.14, 0.50)**	0.22 (0.06, 0.38)*	0.39 (0.15, 0.64)*	0.51 (0.24, 0.79)*	0.28 (0.06, 0.50)*
	General fatigue	0.25 (0.10, 0.41)*	0.15 (0.02, 0.29)*	0.37 (0.17, 0.57)**	0.37 (0.13, 0.60)*	0.20 (0.01, 0.39)*
	Sleep/rest fatigue	0.19 (0.03, 0.34)*	0.09 (−0.04, 0.23)	0.30 (0.11, 0.49)*	0.32 (0.07, 0.57)*	0.14 (−0.04, 0.33)
	Cognitive fatigue	0.17 (0.03, 0.31)*	0.16 (0.04, 0.28)*	0.12 (−0.04, 0.31)	0.29 (0.07, 0.50)*	0.17 (0.01, 0.34)*
		PedsQL^TM Generic Core Scales
		Total Score	Physical functioning	Emotional functioning	Social functioning	School functioning
		β (95%CI)
PedsQL^TM MFS	Total Score	0.62 (0.43, 0.82)**	0.66 (0.39, 0.94)**	0.77 (0.49, 1.05)**	0.25 (−0.07, 0.57)	0.79 (0.46, 1.12)**
	General fatigue	0.46 (0.28, 0.63)**	0.50 (0.26, 0.74)**	0.50 (0.24, 0.76)**	0.18 (−0.09, 0.44)	0.62 (0.34, 0.90)**
	Sleep/rest fatigue	0.38 (0.20, 0.56)**	0.53 (0.31, 0.75)**	0.45 (0.19, 0.71)**	−0.01 (−0.28, 0.25)	0.48 (0.19, 0.77)*
	Cognitive fatigue	0.32 (0.15, 0.49)**	0.23 (−0.001, 0.46)	0.46 (0.24, 0.68)**	0.27 (0.05, 0.50)*	0.38 (0.11, 0.64)*

Linear regression analyses with data represented as β-estimates (95% confidence interval, 95%CI); CASP Total Score and subdomains (dependent variables) and MFS (independent variables) adjusted for sex, age at admission (<18 or >18) and type of injury (TBI/NTBI). *p < .05; **p < .001

PedsQL^TM Multidimensional Fatigue Scale (MFS), 0–100, with lower scores indicating more fatigue.

Child and Adolescent Scale of Participation (CASP), 0–100 with lower scores indicating more participation restrictions.

PedsQL^TM Generic Core Scales, 0–100, with lower scores indicating the diminished health-related quality of life.