The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway

Figures & data

Figure 1. Inclusion of participants (psychologists and managers) from Swedish and Norwegian habilitation centers.

The figure illustrates the process of participant inclusion. It specifies how many invitations that were sent to psychologists and managers in the pediatric habilitation centers in Sweden and Norway, the responses received and how the final sample comprised 67 of 203 (33%) of the possible respondents in Sweden and 22 of 42 (52%) in Norway.

Table 1. Prerequisites for implementing a project according to the Breakthrough model of cooperation for improvement of health services and status in Norwegian national quality improvement project prior to launch of project.

	Prerequisite	Status prior to commencement of project
1	There is a substantial gap between knowledge and practice	Less than one-third of children with CP were assessed despite knowledge about the heightened risk of cognitive impairments. The CPCog protocol, which details when and how to assess cognition in children with CP, was not implemented nationally.
2	There is variability in practices	The habilitation centers reported between 10 and 80% of cognitive assessment results of children with CP to the NorCP.
3	There are examples of improved practice	Some habilitation centers assessed and reported as high as 80% of cognitive assessment results for children with CP to the NorCP. Their good practices needed to be described and disseminated.
4	There is potential for collaboration among professionals working towards a common goal	An informal survey from 2012 indicated that 15 of 21 habilitation centers wanted a follow-up protocol for cognition [9]. All centers expressed willingness to participate in a quality improvement project, as well as begin reporting cognitive assessment results using the CPCog protocol to the NorCP.
5	An improved praxis would be the results of this process	A collaboration towards implementing the CPCog protocol could increase the number of children with CP assessed for cognitive functioning and reported to the NorCP.
6	Knowledge about processes of change can accelerate the process	Lectures about the methodology of health service improvement would be provided as part of the project

NorCP: Norwegian Quality and Surveillance Registry for Cerebral Palsy.

Figure 2. Reasons listed by Swedish psychologists as why the CPCog was not followed (N = 24).

The figure illustrates the reasons given by Swedish psychologists as to why the CPCog was not followed. It shows that 24 psychologists responded, and multiple responses were possible. 16 psychologists gave “Lack of time” as a reason. 8 psychologists gave “Other” as a reason. 4 psychologists gave “Have our own routines of cognitive assessment” as a reason. 2 psychologists gave “My manager does not allow it” as a reason. 1 psychologist gave “Did not know there were recommendations of cognitive assessments in CPUP” as a reason. 1 psychologist gave “Do not feel competent to cognitively assess children with CP” as a reason. 1 psychologist gave “Do not know” as a reason.

Table 2. Reported assessment practices and adherence to the CPCog protocol in pediatric habilitation centers in Sweden (N = 203 respondents; psychologists and managers) and Norway (N = 22 respondents; centers), number and percentage reported for each question.^a

Survey items	Sweden			Norway
	Combined N(%)	Psychologists N	Managers N	N (;%)
Assessment practices
Number of children assessed annually
<5	19 (31)	17	2	3 (15)
5–10/5–9	21 (34)	16	5	4 (20)
11–15/10–15	2 (3)	1	1	7 (35)
>15	1 (2)	1	0	6 (30)
Don’t know	18 (30)	15	3
Age groups assessed (multi-select)
Any age	10 (11)	8	2	6 (30)
Before 5 years	2 (2)	1	1
5–6 years	49 (52)	42	7	2 (10)
7–11 years	5 (5)	5	0
12–13 years	28 (29)	26	2
Both 5–6 and 12–13 years				12 (60)
Don’t know	1 (1)	0	1
Gross Motor Function Classification System levels assessed
Levels I–III	0	0	0	6 (30)
Levels I–V	39 (64)	32	7	14 (70)
Don’t know	22 (36)	18	4
CPCog protocol
CPCog: knowledge of protocol
Yes	57 (85)	44	13	18 (82)
No	10 (15)	8	2	4 (18)
CPCog: adherence
Yes	22 (36)	18	4	13 (59)
No	11 (18)	11	0	9 (41)
Sometimes	20 (33)	13	7
Don’t know	8 (13)	8	0
CPCog: Report data to CPUP (Sweden) or NorCP (Norway)
Yes	34 (56)	30	4	12 (55)
No	9 (15)	7	2	10 (45)
Sometimes	13 (21)	10	3
Don’t know	5 (8)	3	2

^aFor some questions it was possible to indicate multiple answer alternatives, and the number of responses is larger than number of total participants from Sweden (N = 67).

Table 3. Number of children assessed annually with a cognitive test at a Swedish pediatric habilitation center, presented in relation to groups reported assessed (age and Gross Motor Function Classification System level), and the center’s knowledge of and adherence to the CPCog protocol, as reported by psychologist and managers.

	Number of children assessed annually at a Swedish pediatric habilitation center
	<5	6–10	11–15	>15	Don’t know
Psychologists
Age groups (multi-select)
Any age	5	1	0	0	1
Before 5 years	0	1	0	0	0
5–6 years	12	15	1	1	13
7–11 years	1	1	0	0	3
12–13 years	7	10	0	1	8
Gross Motor Function Classification System
Levels I-V	8	14	0	1	9
Don’t know	9	2	1	0	6
CPCog
Knowledge about	13	15	1	1	12
Adherence to	7	11	1	0	12
Report data to CPUP	12	14	1	0	13
Managers
Age groups
Any age	1	1	0	0	1
Before 5 years	1	1	5	1	0
5–6 years	1	1	5	1	0
7–11 years	0	2	5	1	3
12–13 years	1	0	1	1	0
Gross Motor Function Classification System
Levels I-V	2	3	1	0	1
Don’t know	0	2	0	0	2
CPCog
Knowledge about	2	4	1	0	2
Adherence to	2	3	0	0	2
Report data to CPUP	2	3	0	0	2

Table 4. Number of children assessed annually with a cognitive test at a Norwegian pediatric habilitation centers (N = 20 centers), presented in relation to groups reported assessed (age and Gross Motor Function Classification System levels), and the centers’ knowledge about and adherence to the CPCog protocol.

	Number of children assessed annually at a Norwegian pediatric habilitation center
	<10	10–15	>15
Age groups
5–6 years	1	0	1
5–6 and 12–13 years	3	4	5
Other ages or upon referral	3	3	0
Gross Motor Function Classification System
Levels I–III	2	2	2
Levels I–V	5	5	4
CPCog
Knowledge about	6	6	6
Adherence to	3	5	5
Report data to NorCP	2	4	6

Figure 3. Percentage of children with cerebral palsy in the Norwegian Quality and Surveillance Registry for Cerebral Palsy recorded as having been cognitively assessed, as registered from 2013 to 2020.

The diagram illustrates how number of children registered in the Norwegian Quality and Survelliance Registry for Cerebral Palsy (NorCP) has increased over the last decade. The first registration precedes the introduction of the systematic follow-up protocol of cognition, known as CPCog. CPCog was introduced in Norway in 2013 and then 29% of the children registered in NorCP had been assessed. The percentage was stable until a Quality Improvement Project, aimed at increasing the number of children cognitively assessed, was carried out in 2019. The last registration is from December 2020, and by then 62% had been assessed.

Figure 4. Percentage of children with cerebral palsy in the Norwegian Quality and Surveillance Registry for Cerebral Palsy recorded with at least one cognitive assessment with a standardized measure per birth year as of December 31, 2020.

The diagram illustrates the percentage of children born in the years 2002 to 2014 with cerebral palsy in the Norwegian Quality and Surveillance Registry for Cerebral Palsy recorded with at least one cognitive assessment per birth year as of December 31, 2020. The graph shows that there is an increase in the percentage of children recorded with at least one cognitive assessment over time, with higher percentages in the later birth years. The lowest recorded percentage was for the birth year 2003, with 46%. The highest recorded percentage was for the birth year 2013, with 84%.