Potential benefits of the cognitive orientation to daily occupational performance approach in young adults with spina bifida or cerebral palsy: a feasibility study

Figures & data

Figure 1. Study design.

Table 1. Participants’ demographics.

Participant	Age	Gender	Housing status	Employment status	Diagnosis	Hoffer		Shunt	GMFCS	MACS	CFCS
Embedded group spina bifida
1	17	Female	Living with parents	Student	SB	Household walker		Shunt	–	–	–
2	28	Female	Living with partner	Trainee	SB	Non walker		Shunt	–	–	–
3	19	Male	Living with parents	Student	SB	Non walker		Shunt	–	–	–
4	27	Male	Living alone	Unemployed	SB	Non walker		Shunt	–	–	–
5	16	Male	Living alone with service	Student	SB	Non walker		Shunt	–	–	–
Embedded group cerebral palsy
6	28	Male	Living alone	Student	DCP	–	–		II	II	I
7	27	Male	Living with partner	Employed	BSCP	–	–		III	II	I
8	21	Female	Living with parents	Employed	USCP	–	–		I	II	I
9	23	Female	Living alone	Employed	USCP	–	–		II	II	I
10	19	Male	Living with parents	Student	BSCP	–	–		II	II	I

GMFCS: gross motor function classification scale; MACS: manual ability classification scale; CFCS: communication function classification scale; SB: spina bifida; DCP: dyskinetic cerebral palsy; BSCP: bilateral spastic cerebral palsy; USCP: unilateral spastic cerebral palsy

Figure 2. Study timeline.

Table 2. Results: structured interviews.

Post-intervention (T2)
Interview	Embedded group spina bifida	Embedded group cerebral palsy	Combined group spina bifida + cerebral palsy
Meaningful	N of participants =5	N of participants =5	N of participants =10
Yes	5/5	5/5	10/10 (100%)
Continued use of
global strategy
Yes	2/5	3/4 (one missing)	5/9 (56%) (one missing)
Effort
VAS scale >5	1/5	3/5	4/10 (40%)
Worth the effort,
linked to the goals	N of goals =15	N of goals =15	N of goals = 30
Yes	14/15	14/15	28/30 (93%)
Six months after the intervention (T3)
Meaningful	N of participants =5	N of participants =5	N of participants = 10
Yes	5/5	5/5	10/10 (100%)
Continued use of
Global strategy
Yes	3/5	5/5	8/10 (80%)
Significant other
Yes	5/5	1/5	6/10 (60%)
Effort
VAS scale >5	1/5	2/4 (one missing)	3/9 (33%) (one missing)
Worth the effort,
linked to the goals	N of goals =15	N of goals =15	N of goals = 30
Yes	15/15	15/15	30/30 (100%)

Table 3. Results: proportions of change in outcome measures.

Baseline (T1) – post-intervention (T2)
	Embedded group spina bifida	Embedded group cerebral palsy	Combined group spina bifida + cerebral palsy
Measurement	N of goals =15	N of goals =15	N of goals =30 (%)
Goal attainment
COPM difference ≥2 points
Performance ≥	14/15	15/15	29/30 (96%)
Satisfaction ≥	14/15	15/15	29/30 (96%)
Activity and participation	N of participants =5	N of participants =5	N of participants =10
OSA, Swedish version difference ≥1 SE
Competence >	1/5	2/4 (one missing)	3/9 (33%) (one missing)
Competence =	4/5	2/4 (one missing)	6/9 (66%) (one missing)
Competence <	0/5	0/4 (one missing)	0/9 (0%) (one missing)
AMPS difference ≥2 SE
Motor skills >	1/5	0/5	1/10 (10%)
Motor skills =	4/5	4/5	8/10 (80%)
Motor skills <	0/5	1/5	1/10 (10%)
Process skills >	0/5	2/5	2/10 (20%)
Process skills =	5/5	3/5	8/10 (80%)
Process skills <	0/5	0/5	0/10 (0%)
Baseline (T1) – six months after the intervention (T3)
Goal attainment
COPM difference ≥2 points
Performance ≥	14/15	15/15	29/30 (96%)
Satisfaction ≥	13/15	15/15	28/30 (93%)
Activity and participation	N of participants =5	N of participants =5	N of participants =10
OSA, Swedish version difference ≥1 SE
Competence >	2/5	1/4 (one missing)	3/9 (33%) (one missing)
Competence =	3/5	2/4 (one missing)	5/9 (55%) (one missing)
Competence <	0/5	1/4 (one missing)	1/9 (11%) (one missing)
AMPS difference ≥2 SE
Motor skills >	0/5	0/5	0/10 (0%)
Motor skills =	5/5	4/5	9/10 (90%)
Motor skills <	0/5	1/5	1/10 (10%)
Process skills >	1/5	1/5	2/10 (20%)
Process skills =	4/5	4/5	8/10 (80%)
Process skills <	0/5	0/5	0/10 (0%)
Body function	N of participants =5	N of participants =5	N of participants =10
DEX, raw score (self-rated Executive function)
Less problems	5/5	3/5	8/10 (80%)
More problems	0/5	2/5	2/10 (20%)
Tower test, scaled score (planning ability)
Improved	4/5	3/5	7/10 (70%)
Same result	1/5	2/5	3/10 (30%)

COPM: Canadian occupational performance measure; OSA: occupational self-assessment; AMPS: assessment of motor and process skills; DEX: dysexecutive questionnaire

Table 4. Results: differences in goal attainment and body function, combined group.

Measurement	Median	IQR	Z statistics	p Value
COPM
performance T1	3	1.75– 4.25	–	–
Performance T2	9	7.00–10.00	–	–
Performance T3	8.50	7.00–9.00	–	–
Performance T1–T2	–	–	−4.778	p < 0.001
Performance T1–T3	–	–	−4.803	p < 0.001
Satisfaction T1	3	1.00–4.25	–	–
Satisfaction T2	9.50	8.75–10.00	–	–
Satisfaction T3	9	8.00–9.25	–	–
Satisfaction T1–T2	–	–	−4.784	p < 0 .001
Satisfaction T1–T3	–	–	−4.753	P < 0. 001
DEX raw score, lower score = less problems
T1	29.00	14.25–31.00	–	–
T3	22	12.75–29.50	–	–
T1–T3	–	–	−1.663	p = 0.102
Tower test, scaled score, higher score = better planning
T1	8	6.75–11.00	–	–
T3	12	9.00–13.00	–	–
T1–T3	–	–	−2.841	p = 0.005

T1: baseline; T2: post-intervention; T3: follow-up at 6 months; COPM: Canadian occupational performance measure (self-rated performance and satisfaction with performance); DEX: dysexecutive questionnaire (self-rated executive function); Tower Test (planning ability)

Figure 3. Boxplots, Tower test, total achievement of scaled score, and composite group. A higher value represents better performance.

Table 5. Goals linked to international classification of functioning, disability, and health – child and youth version.

Goals (number of goals)	International classification of functioning, disability and health –domains level 2 and 3
Cooking (6)^6	d 6301 Preparing complex meals d 6300 Preparing simple meals
Getting things done in time (4) ^4	d 2301 Managing daily routine d5300 Regulating urination d2305 Managing one’s time
Structure at home (4) ^4	d 160 Focusing attention d 177 Making decisions d 2302 Completing the daily routine 8700 Personal economic resources
School-work (4) ^4	d 160 Focusing attention d 175 Solving problems d 177 Making decisions d 1661 Comprehending written language d 2101 Undertaking a complex task d 8201 Maintaining educational programme
Mobility and transportation (3) ^3	d 430 Lifting and carrying objects d 465 Moving around using equipment d 4750 Driving human-powered transportation d 4554 Swimming
Dressing and grooming (2) ^2	d 2101 Undertaking a complex task d 4402 Manipulating d 5202 Caring for hair
Energy left for other things than work (2) ^2	d 177 Making decisions d 2303 Managing one’s own activity level
Find the way in an urban setting (2) ^2	d 2101 Undertaking a complex task
Household (2) ^2	d 6400 Washing and drying clothes and garments d 6501 Maintaining dwelling and furnishings
Toileting (1) ^1	d5301 Regulating defecation

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