Child and family health-related quality of life and participation outcomes and goals after acquired brain injury: a cross-sectional survey

Figures & data

Table 1. Details of selected outcome measures.

Outcome	Tool	Completion	Scoring
CYP Participation	Child and Adolescent Scale of Participation (CASP)	Self-report (11+) Parent-carer-proxy report	20 items in 4 sections (home participation, community participation, school participation and home and community living activities). 4-point Likert scale is used to rate participation (4 = age expected (full participation), 3 = somewhat limited, 2 =very limited and 1 = unable, not applicable items = 0). Total score divided by the applicable number of items and multiplied by 100 to conform to a 100-point scale. Higher scores indicate higher levels of participation. A score of less than 92 is deemed to represent severely impaired participation (22).
CYP HRQoL	Pediatric Quality of Life Inventory (PedsQL™ 4.0 Generic Core Scales SF15)	Self-report (5–7, 8–12, 13–18 versions) Parent-carer-proxy report	15 items in 4 sections (physical functioning, emotional functioning, social functioning and school functioning). 5-point Likert scale is used to score each item (0 = never, 1 = almost never, 2 = sometimes, 3 = often, 4 = almost always). Scores transformed into a 0–100 scale – total score being the mean of all items. Higher scores indicate better HRQoL. A score of 72.05 or less, being greater than 1 standard deviation (SD) from a UK healthy population mean (83.89) is deemed to represent risk of impaired HRQoL for UK CYP (19).
Family Impact	Pediatric Quality of Life Inventory Family Impact Module (PedsQL™ FIM)	Parent-carer report	36 items in 8 sections (physical functioning, emotional functioning, social functioning, cognitive functioning, communication, worry, daily activities, family relationships). Scoring as per PedsQL^TM Higher score indicates higher HRQoL/family functioning. Score of 1 SD or more (59.6) from the healthy population mean (73.2) is considered to represent risk of impaired family HRQoL (25).
Parental wellbeing (anxiety and depression screener)	Patient Health Questionnaire-4 (PHQ-4)	Parent-carer report	4 items: 2 for symptoms of anxiety (Generalized Anxiety Disorder 2-item (GAD-2), 2 for symptoms of depression (Patient Health Questionnaire-2 (PHQ-2). 4-point Likert scale (0 = not at all, 1 = several days, 2 = more than half the days, 3 = nearly every day) with the sum of all scores being the total (0–12). Total score - > 6 (or > 3 on subscales) = ‘yellow flag’ for presence of a mild-moderate anxiety or depression disorder Total score > 9 (or > 5 on subscales) = ‘red flag’ for moderate-severe anxiety or depression disorder (24).

Figure 1. Study recruitment flowchart.

Table 2. Respondent characteristics.

Table of respondent characteristic			n =
No. of parent respondents		Total	49
		Mothers	42
		Fathers	7
CYP Demographics
Sex, n (%)		Female	15 (29%)
		Male	36 (71%)
Current Age, median (IQR)			13yr (8yr-16yr) (4–12)
Diagnosis, n (%)		Brain Tumour	23 (45%)
		Trauma	12 (24%)
		Stroke/Bleed	6 (11%)
		Infection/Inflammation	5 (10%)
		Other	5 (10%)
Severity (KOSCHI completed by clinical team at initial assessment), median (IQR)			3b (3a-4b)
Time since injury, years, median (IQR)			2yr11mo (1yr11mo-3yr7mo)
Index of Multiple Deprivation (quintiles), n (%)		5 (10/9) (highest)	11 (22%)
		4 (8/7)	9 (18%)
		3 (6/5)	9 (18%)
		2 (4/3)	12 (24%)
		1 (2/1) (lowest)	10 (20%)
Ethnicity	Any other White background		2 (4%)
Asian or any other Asian background			7 (14%)
Black, African, Caribbean or Black British			2 (4%)
White – British-English, Welsh, Scottish, Northern Irish			39 (76%)
Prefer not to say/Not stated			1 (2%)

Table 3. Outcome measure scores.

Outcome measure		Median (IQR)	Mean (SD)	Freq (%)
CYP, n=46
CASP	Total Score	80.63 (61.25–94.44)	77.45 (22.55)
	Home participation	91.67 (75.00–95.83)
	Neighbourhood/community participation	75.00 (50.00–93.25)
	School participation	85.00 (70.00–100)
	Home and community living activities	75 (41.67–90.00)
PedsQL^TM	Total Score	64.17 (43.33–78.33)	60.9 (21.06)
	Physical health subscale	60.00 (30.00–80.00)
	Psychosocial subscale	65.00 (50–82.50)
Parents/carers, n = 49
PedsQL^TM FIM	Total Score	56.25 (39.58–74.31)	58.75 (22.63)
	Parental HRQoL subscale	55.00 (43.75–75.00)
	Family functioning subscale	65.63 (46.88–90.63)
PHQ-4	Total Score	4 (2–18)
	Yellow Flag			11 (22%)
	Red Flag			7 (15%)
	GAD-2	2 (15–18)
	Yellow Flag			14 (29%)
	Red Flag			8 (16%)
	PHQ-2	1 (0–3)
	Yellow Flag			13 (27%)
	Red Flag			5 (10%)

Figure 2. Top goals for CYP-ABI and parents/carers.

Table 4. Goals mapped to ICF-CY chapters.

	CYP		Parents/carers
Body Functions	freq	%	freq	%
Chapter 1 – Mental functions	4	3.60	12	8.22
Chapter 2 – Sensory functions and pain	1	0.90	1	0.68
Chapter 4 – Functions of the cardiovascular, hematological, immunological and respiratory systems	1	0.90	1	0.68
Chapter 5 – Functions of the digestive, metabolic, endocrine systems			3	2.05
Chapter 7 – Neuromusculoskeletal and movement-related functions			2	1.37
Activity and Participation
Chapter 1 – Learning and applying knowledge	2	1.80	4	2.74
Chapter 2 – General tasks and demands	4	3.60	4	2.74
Chapter 3 - Communication	1	0.90	1	0.68
Chapter 4 - Mobility	29	26.13	11	7.53
Chapter 5 – Self-care			13	8.90
Chapter 6 – Domestic life	2	1.80	6	4.11
Chapter 7 – Interpersonal Interactions and Relationships	5	4.50	14	9.59
Chapter 8 – Major life areas	18	16.22	27	18.49
Chapter 9 – Community, social and civic life	42	37.84	41	28.08
Environmental Factors
Chapter 1 – Products and technology	2	1.80	1	0.68
Chapter 3 – Support and relationships			1	0.68
Chapter 5 – Services, systems and policies			4	2.74
Total number of goals	111		146
Body Functions goals	6	5	19	13
Activity and Participation goals	103	93	121	83
Environmental Factors goals	2	2	6	4

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