Cognitive assessments among children with cerebral palsy in Sweden and the use of augmentative and alternative communication and interpreters: a cross-sectional registry study

Figures & data

Table 1. Relevant background factors of the study sample and their chi-square (χ²) test p-values, presented by outcomes, cognitively assessed and not cognitively assessed*.

Variables	Cognitively Assessed (n = 157)	Not Cognitively Assessed (n = 2470)	Total (N = 2627)	χ^2 p Value
Age
5-8 years	110 (70.1%)	1292 (52.3%)	1402 (53.4%)	<0.001
11-14 years	47 (29.9%)	1178 (47.7%)	1225 (46.6%)
Sex
Male	94 (59.9%)	1457 (59.0%)	1551 (59.0%)	1.000
Female	63 (40.1%)	989 (40.0%)	1052 (40.0%)
Missing	0 (0%)	24 (1.0%)	24 (1.0%)
CP Subtype
Spastic	124 (79.0%)	1832 (74.2%)	1956 (74.5%)	0.309
Other	27 (17.2%)	509 (20.6%)	536 (20.4%)
Missing	6 (3.8%)	129 (5.2%)	135 (5.1%)
GMFCS Levels
Levels I-III	127 (80.9%)	1677 (20.6%)	536 (20.4%)	0.003
Levels IV-V	26 (16.6%)	726 (29.4%)	752 (28.6%)
Missing	4 (2.5%)	67 (2.7%)	71 (2.7%)
MACS Levels
Levels I-III	123 (78.3%)	1709 (69.2%)	1832 (69.7%)	0.002
Levels IV-V	26 (16.6%)	672 (27.2%)	698 (26.6%)
Missing	8 (5.1%)	89 (3.6%)	97 (3.7%)
CFCS Levels
Levels I-III	136 (86.6%)	1720 (69.6%)	1856 (70.7%)	<0.001
Levels IV-V	21 (13.4%)	750 (30.4%)	771 (29.3%)
Born in Sweden
Yes	141 (89.8%)	2170 (87.9%)	2311 (88.0%)	0.546
No	16 (10.2%)	300 (12.1%)	316 (12.0%)

CP: cerebral palsy; GMFCS: gross motor function classification system; MACS: manual ability classification system; CFCS: communication function classification system; CPUP: Swedish National Quality Registry and Follow-Up Program for Individuals with Cerebral Palsy *Assessment status indicates whether the child had at least one registered cognitive assessment in CPUP between the years 2017 and 2020.

Figure 1. The percentage of eligible children across all age groups (5–8 years, 11–14 years, 5–8 and 11–14 years) who were cognitively assessed over the years 2017–2020.

Line graph plotting the percentage of eligible children with cerebral palsy aged 5–8 years and 11–14 years who were cognitively assessed over the years 2017–2020 in Sweden. Less than 5% of eligible children had registered cognitive assessments for each of these years.

Table 2. Crude odds ratios (ORs), adjusted odds ratios (AORs), 95% confidence intervals (CI), and p-values for univariate and multiple logistic regression models for each predictor variable and the outcome variable, not cognitively assessed^a.

Variables	Not Cognitively Assessed
	OR, 95% CI (lower, upper)	p Value	AOR, 95% CI (lower, upper)^b	p Value
GMFCS IV-V	2.11 (1.40–3.32)	<0.001	––
MACS IV-V	1.86 (1.23–2.93)	0.004	0.74 (0.41–1.39)	0.339
CFCS IV-V	2.82 (1.81–4.63)	<0.001	3.67 (1.93–7.24)	0.001
11 to 14 years	2.14 (1.51–3.06)	<0.001	2.46 (1.71–3.62)	<0.001
Female	1.01 (0.73–1.41)	0.940	1.07 (0.76–1.53)	0.703
Spastic	0.78 (0.50–1.18)	0.264	1.00 (0.61–1.57)	0.990
(Born in Sweden) No	1.22 (0.74–2.15)	0.466	0.92 (0.55–1.64)	0.752

^aNot cognitively assessed indicates that children did not have at least one registered cognitive assessment in CPUP between the years 2017 and 2020.

GMFCS: gross motor function classification system; MACS: manual ability classification system; CFCS: communications functional classification system.

GMFCS, CFCS, MACS levels (ref: I-III); Sex: Female (ref: Male); Cerebral Palsy Subtype: Spastic (ref: Other); Born in Sweden: No (ref: Yes).

^bN observations included = 2386; 241 observations were removed due to missingness.

Figure 2. Percentage of children who were assessed with the CPCog-recommended assessments (Wechsler Scales, VMI, BRIEF) out of the children who were cognitively assessed over the years 2017–2020. Plot A. Children with CP aged 5–8 years and 11–14 years out of the total number of assessed children in both of these age groups; Plot B. Children with CP aged 5–8 years out of children in this age group only; Plot C children with CP aged 11–14 years out of children in this age group only. CP: Cerebral palsy; VMI: Test of Visual Motor Integration; BRIEF: Behavior Rating Inventory of Executive Function; WISC IV: Fourth Edition of the Wechsler Intelligence Scale for Children; WISC V: Fifth Edition of the Wechsler Intelligence Scale for Children.

Three separate line graphs plotting the percentage of children by age group who were assessed with the CPCogrecommended assessments, out of the children who were cognitively assessed for each respective age group. Recommended assessments included Wechsler Scales, Beery-Buktenica Developmental Test of Visual-Motor Integration (VMI), and the Behavior Rating Inventory of Executive Function (BRIEF) questionnaire. For the combined age groups, there was an upward trend in the percentage of BRIEFS and VMIs that were carried out.

Figure 3. Plot shows the percentage of children (aged 5–8 years, 11–14 years, and both) who received all three CPCog recommended assessments, a Wechsler*, Visual Motor Integration (VMI), Behavior Rating Inventory of Executive Function (BRIEF), out of the total number of children who received a cognitive assessment over the years 2017–2020. *Included at least one of the following: Wechsler Nonverbal Scales of Ability, Fourth Edition of the Wechsler Intelligence Scale for Children (WISC IV), Fifth Edition of the Wechsler Intelligence Scale for Children (WISC V).

Line graph plotting the percentage of children ages 5-8 years, 11-14 years, and both who received all three CPCog recommended assessments, out of all the children who received a cognitive assessment over the years 2017–2020. These three assessments included a Wechsler Scale, a Beery-Buktenica Developmental Test of Visual-Motor Integration (VMI), and Behavior Rating Inventory of Executive Function (BRIEF) questionnaire. For three out of the four years, there was a higher percentage of children in the older age group subpopulation who received all three recommended assessments.

Table 3. Psychologists’ use and perceptions of alternative and augmentative communication, as reported in CPCog survey data and CPUP registry data.

CPCog Survey Data	n	%
Use AAC when needed^a
Yes	26	52.0%
No	8	16.0%
Sometimes	10	20.0%
Don’t know	6	12.0%
Types of AAC used
Communication books/tables/loose symbols	34	94.4%
Speech-generating devices	4	11.1%
Other^b	9	25.0%
Perception of using AAC for cognitive assessments^c
Works well, the result feels reliable	16	44.4%
Works less well	12	33.3%
Other^d	6	16.7%
Don’t know	2	5.6%
Registry Data	N	n Used AAC (% of Total)
AAC needed^e	30	16 (53.3%)

CPUP: Swedish National Quality Registry and Follow-Up Program for Individuals with Cerebral Palsy; AAC: augmentative and alternative communication.

^aResponses to the question, “Do you use AAC for the cognitive assessment of children with cerebral palsy who need AAC?”.

^bEye-tracking, manual signs.

^cResponses to the multi-select question, “How well do you think it works to carry out a cognitive assessment with the help of AAC?”.

^dParticipants noted that their perception of using AAC depended on the type of AAC used and the child’s communicative ability.

^eThe psychologist registered that the child needed AAC to communicate at the time of the cognitive assessment.

Table 4. Psychologists’ use and perceptions of interpreters, as reported in CPCog survey data and CPUP registry data.

CPCog Survey Data	N	%
Test non-Swedish-speaking children^a
Yes	32	64.0%
Sometimes	15	30.0%
Not relevant	1	2.0%
Don’t know	2	4.0%
Reported N non-Swedish-speaking children assessed with interpreter over the last year^b
None	5	10.6%
<5 children	20	42.6%
5-10 children	1	2.1%
Don’t know	21	44.7%
Perception of using interpreters for cognitive assessments^c
Works well, the result feels reliable	12	24.0%
Works less well	25	50.0%
Works very poorly	2	4.0%
Not relevant	1	2.0%
Other^d	4	8.0%
Don’t know	6	12.0%
Registry Data	N	n Used AAC (% of Total)
Interpreter needed^e	10	10 (100%)

CPUP: Swedish National Quality Registry and Follow-Up Program for Individuals with Cerebral Palsy.

^aResponses to the question, “Do children with CP who do not speak Swedish receive cognitive assessments?”.

^bResponses to the question, “How many children with CP who did not speak Swedish received cognitive assessments with the help of an interpreter over the last year?”.

^cResponses to the question, “How well do you think it works to carry out a cognitive assessment with the help of an interpreter?”.

^dParticipants commented that their perception depended on the skill/capacity of the interpreter.

^eInterpreter was registered as needed by the psychologist at the time of cognitive assessment.

Summary of CPCog Protocol in Sweden (Phase I). Adapted from Bøttcher et al. [11].

Instrument		Purpose	Recommended Age (in Sweden)
For GMFCS I-III	For GMFCS IV-V
WPPSI, and/or WISC	Adapted assessment	To measure general cognitive functioning	6/7 years
WISC	Adapted assessment	To measure general cognitive functioning	12/13 years
VMI	Adapted assessment	To measure visual-motor integration	6/7 years and 12/13 years
BRIEF	Parents/guardians or teachers complete the assessment	To measure executive functioning	6/7 years and 12/13 years

GMFCS: Gross Motor Function Classification System; WPPSI: Wechsler Preschool and Primary Scale of Intelligence, third or fourth Swedish edition; WISC: Wechsler Intelligence Scale for Children, fourth or fifth Swedish edition; VMI: Visual-Motor Integration; BRIEF: Behavior Rating Inventory of Executive Function.

Bøttcher L, Stadskleiv K, Berntsen T, et al. Systematic cognitive monitoring of children with cerebral palsy–the development of an assessment and follow-up protocol. Scand J Disab Res. 2016;18(4):304–315.

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