The PURPLE N study: objective and perceived nutritional status in children and adolescents with cerebral palsy

Figures & data

Table 1. Demographic, clinical and feeding profile of study participants according to HCPs.

	Gross Motor Function Classification level (GMFCS)
Parameter, n (%) unless stated	Overall^a	I	II	III	IV	V
Total participants	497^b	79	65	99	87	161
Demographics
Mean age (years) (SD)	6.8 (4.4)	6.7 (4.4)	7.1 (4.3)	6.7 (4.9)	6.5 (4.3)	6.8 (4.3)
Male	287 (58%)	48 (62%)	42 (65%)	64 (65%)	45 (52%)	85 (54%)
Female	204 (42%)	30 (38%)	23 (35%)	34 (35%)	41 (48%)	73 (46%)
Mean gestational age (weeks) (SD)	34.1 (5.2)	34.8 (5.1)	33.7 (4.9)	33.5 (4.9)	32.9 (5.4)	35.0 (5.3)
Mean birth weight (g) (SD)	2270 (1030)	2473 (1090)	2213 (973)	2145 (982)	2076.4 (990.8)	2362.6 (1032.8)
Mean age at diagnosis (months) (SD)	12.4 (13.0)	13.9 (13.5)	18.4 (20.5)	15.0 (10.5)	10.6 (10.7)	8.2 (9.3)
Country
Czech Republic	10 (2%)	0 (0%)	4 (6%)	1 (1%)	2 (2%)	3 (2%)
Greece	25 (5%)	1 (1%)	3 (5%)	7 (7%)	8 (9%)	6 (4%)
Hungary	60 (12%)	6 (8%)	8 (12%)	8 (8%)	7 (8%)	31 (19%)
Italy	108 (22%)	19 (24%)	17 (26%)	7 (7%)	16 (18%)	48 (30%)
The Netherlands	13 (3%)	3 (4%)	4 (6%)	3 (3%)	2 (2%)	1 (1%)
Poland	117 (24%)	20 (25%)	13 (20%)	26 (26%)	23 (26%)	30 (19%)
Slovakia	14 (3%)	11 (14%)	1 (2%)	0 (0%)	0 (0%)	2 (1%)
Turkey	150 (30%)	19 (24%)	15 (23%)	47 (47%)	29 (33%)	40 (25%)
Clinical profile
Motor type
Spastic	416 (84%)	71 (90%)	55 (85%)	87 (88%)	73 (84%)	125 (78%)
Ataxic	13 (3%)	3 (4%)	3 (5%)	3 (3%)	2 (2%)	2 (1%)
Dyskinetic/athetoid	21 (4%)	2 (3%)	3 (5%)	3 (3%)	5 (6%)	8 (5%)
Mixed	47 (9%)	3 (4%)	4 (6%)	6 (6%)	7 (8%)	26 (16%)
Topographical type
Hemiplegia	105 (21%)	45 (57%)	23 (35%)	17 (17%)	12 (14%)	6 (4%)
Diplegia	105 (21%)	23 (29%)	32 (49%)	34 (34%)	11 (13%)	5 (3%)
Triplegia	16 (3%)	1 (1%)	1 (2%)	5 (5%)	7 (8%)	2 (1%)
Quadriplegia	271 (55%)	10 (13%)	9 (14%)	43 (43%)	57 (66%)	148 (92%)
Feeding and therapy profile
Feeding mode^c
Oral-self	156 (31%)	62 (78%)	37 (57%)	39 (39%)	13 (15%)	3 (2%)
Oral-assisted	284 (57%)	14 (18%)	28 (43%)	55 (56%)	66 (76%)	119 (74%)
Tube feeding only	35 (7%)	3 (4%)	0 (0%)	4 (4%)	3 (3%)	24 (15%)
Oral-self and tube	1 (0%)	0 (0%)	0 (0%)	0 (0%)	0 (0%)	1 (1%)
Oral-assisted and tube	21 (4%)	0 (0%)	0 (0%)	1 (1%)	5 (6%)	14 (9%)
Feeding problems and stress during feeding
No	358 (72%)	67 (85%)	54 (83%)	78 (79%)	60 (69%)	95 (59%)
Yes	139 (28%)	12 (15%)	11 (17%)	21 (21%)	27 (31%)	66 (41%)
Reasons for feeding problems and stress during feeding
Long mealtimes	51 (37%)	3 (25%)	6 (55%)	9 (43%)	10 (37%)	21 (32%)
Stressful mealtime for child	11 (8%)	1 (8%)	0 (0%)	2 (10%)	3 (11%)	5 (8%)
Stressful mealtime for caregiver	14 (10%)	4 (33%)	0 (0%)	1 (5%)	1 (4%)	8 (12%)
Stressful mealtime for child and caregiver	15 (11%)	1 (8%)	1 (9%)	2 (10%)	4 (15%)	7 (11%)
Long mealtime and stressful for child	6 (4%)	0 (0%)	0 (0%)	2 (10%)	1 (4%)	3 (5%)
Long mealtime and stressful for caregiver	16 (12%)	1 (8%)	2 (18%)	1 (5%)	2 (7%)	10 (15%)
Long mealtime and stressful for child and caregiver	26 (19%)	2 (17%)	2 (18%)	4 (19%)	6 (22%)	12 (18%)
Mean intensity of therapy^d (hours/month) (SD)	18.3 (18.27)	12.24 (8.43)	19.49 (20.15)	19.05 (17.68)	21.44 (22.9)	18.59 (18.01)
Nutritional status measures
Weight-for-age
Not malnourished	294 (64%)	63 (89%)	45 (76%)	60 (67%)	51 (62%)	71 (46%)
Moderately malnourished	68 (15%)	6 (8%)	6 (10%)	16 (18%)	12 (15%)	28 (18%)
Severely malnourished	99 (21%)	2 (3%)	8 (14%)	14 (16%)	19 (23%)	54 (35%)
Height-for-age
Not stunted	310 (67%)	64 (89%)	47 (81%)	62 (68%)	55 (66%)	77 (51%)
Moderately stunted	77 (17%)	5 (7%)	8 (14%)	16 (18%)	17 (20%)	30 (20%)
Severely stunted	75 (16%)	3 (4%)	3 (5%)	13 (14%)	11 (13%)	45 (30%)
Weight-for-height
Severely wasted	20 (13%)	1 (4%)	4 (36%)	2 (5%)	6 (19%)	7 (14%)
Mild/moderately wasted	24 (16%)	4 (17%)	1 (9%)	8 (22%)	3 (9%)	7 (14%)
Normal	101 (66%)	18 (75%)	5 (45%)	25 (68%)	22 (69%)	31 (63%)
Overweight	5 (3%)	1 (4%)	1 (9%)	1 (3%)	0 (0%)	2 (4%)
Obese	4 (3%)	0 (0%)	0 (0%)	1 (3%)	1 (3%)	2 (4%)
BMI-for-age
Severely malnourished	53 (19%)	0 (0%)	6 (13%)	6 (13%)	11 (25%)	28 (33%)
Mildly/moderately malnourished	31 (11%)	5 (11%)	6 (13%)	5 (11%)	4 (9%)	11 (13%)
Normal	141 (52%)	31 (67%)	22 (49%)	28 (61%)	22 (50%)	36 (42%)
Overweight	34 (13%)	8 (17%)	9 (20%)	4 (9%)	6 (14%)	7 (8%)
Obese	13 (5%)	2 (4%)	2 (4%)	3 (7%)	1 (2%)	4 (5%)

^an = 481 for age, n = 477 for gestational age, n = 463 for birth weight, n = 462 for age at diagnosis, and n = 438 for intensity of therapy; ^bGMFCS data were missing for 6 participants; ^cOral-self = participant was able to feed orally without assistance; oral-assisted = participant had help from caregiver with oral feeding; ^dIntensity of physical, occupational, and speech therapies. BMI: body mass index.

Figure 1. Gastrointestinal problems, oropharyngeal dysphagia (OPD) and drooling according to GMFCS level.

Table 2. Concerns expressed according to perceptions of the nutritional status of participants. Data are reported independently for HCPs and caregivers.

Perceived nutritional status:	HCP concerns (n = 497)			Caregiver concerns (n = 431^b)
	No	Yes	Total	No	Yes	Total
Severely malnourished^a	1 (3%)	32 (97%)	33	5 (24%)	16 (76%)	21
Mildly/moderately malnourished^a	74 (43%)	99 (57%)	173	40 (37%)	68 (63%)	108
Normal	237 (93%)	18 (7%)	255	242 (89%)	30 (11%)	272
Mildly/moderately overweight	18 (56%)	14 (44%)	32	16 (76%)	5 (24%)	21
Severely overweight	0 (0%)	4 (100%)	4	1 (17%)	5 (83%)	6

n = number of participants available for data analysis; percentage values in parentheses are calculated using the number of concerns expressed (either yes or no) as the numerator and the total number of concerns in each category of nutritional status as the denominator; the data show the number of concerns (yes/no) expressed. ^aThe term malnourished is used synonymously with undernourished for subjective assessment of nutritional status by HCPs or caregivers; ^bThree missing.