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Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach -1 (2019) 1–6 1

DOI 10.3233/PRM-180537
IOS Press

Nutritional care: The ‘poor child’ of clinical

care in children with cerebral palsy
D.A.C. Snika,∗ , P.H. Jongeriusb , N.M. de Roosc and O. Verschurend,e
a
Department of Rehabilitation, Radboud University Medical Center, Nijmegen, The Netherlands
b
Department of Rehabilitation, Sint Maartenskliniek, Nijmegen, The Netherlands
c
Division of Human Nutrition, Wageningen University, Wageningen, The Netherlands
d
Brain Center Rudolph Magnus and Center of Excellence for Rehabilitation Medicine,University Medical Center
Utrecht, Utrecht, The Netherlands
e
De Hoogstraat Rehabilitation, Utrecht, The Netherlands

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Abstract. There is a considerable risk of malnutrition for children with CP due to insufficient nutritional intake. The most im-
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portant causes of insufficient intake are feeding problems which are highly prevalent in children with CP (depending on def-
inition, age and heterogeneity of the researched population). Considering these facts, nutritional status should have the full
attention of healthcare professionals but this is not yet the case. Evidence from research in clinical practice suggests that:
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1) there is no consensus regarding who should perform the measurement and how often, 2) no standardised nutritional assess-
ment is implemented, and 3) there is suboptimal communication and management about feeding and nutritional status in most
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healthcare networks.
To overcome these problems, validated and practical tools for the screening and assessment of nutritional status should be a topic
of research and subsequently made available and implemented in clinical practice. Because body composition is an objective
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indicator of available energy stores, research should focus on optimising measurement methods to determine body composition
using anthropometric measures or bioelectrical impedance analysis (BIA). Furthermore, there is a definite need among health
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care providers for explicit and clear agreements on organisation and communication about nutritional care for children with CP.
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Keywords: Nutrition, cerebral palsy, body composition, malnutrition, nutritional management

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1. Synopsis of the problem These shortcomings may lead to missed treatment

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1 11

opportunities to improve health in these vulnerable 12

2 In clinical practice, nutritional care for children with children. 13

3 Cerebral Palsy (CP) does not meet the desirable quality What this paper adds: 14
4 standard (i.e., standardized and periodic evaluation of
5 nutritional status). This may be due to a number of fac- – This paper outlines the contributing factors of cur- 15

6 tors: 1) insufficient attention to nutritional status dur- rent suboptimal nutritional care for children with 16

7 ing doctor consultations, 2) no standardised nutritional Cerebral Palsy. 17

8 assessment is carried out, and 3) suboptimal commu- – It highlights the need for improving screening and 18
9 nication and management considering feeding and nu-
assessment methods of nutritional status and or- 19
10 tritional status among health care professionals.
ganisation of nutritional care. 20

– It highlights the need among health care profes- 21

∗ Corresponding
author: Dorinda Snik, Department of Rehabili- sionals for improving communication and organ- 22
tation, Radboud University Medical Center, Oktaviastraat 10, 6515
CM Nijmegen, The Netherlands. Tel.: +31 630110984; E-mail:
isation related to feeding and nutritional status. 23

dorinda.snik@radboudumc.nl. – It gives suggestions for future research. 24

1874-5393/19/$35.00 c 2019 – IOS Press and the authors. All rights reserved
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2 D.A.C. Snik et al. / Nutritional care: The ‘poor child’ of clinical care in children with cerebral palsy

25 2. Nutritional challenges in children with CP have been carried out. There are no further data about 75

her ‘body composition’ (see also ‘What can we mea- 76

26 Depending on the researched population (age and sure?’, body composition). 77

27 heterogeneity) and used definitions, at least 19% of in- Currently, Anna and her mother regularly visit a 78

28 dividuals with CP have feeding difficulties that may ‘saliva control team’ for evaluation and treatment of 79

29 lead to malnutrition [1]. Extreme prevalence numbers her oral-motor problems. This team does not check nu- 80

30 (99%) can be found in the literature when consider- tritional status. Furthermore, a school-affiliated physi- 81

31 ing children with severe CP [2]. Malnutrition in chil- atrist and dietician are involved. Unfortunately, they do 82

32 dren with CP is a serious problem as it markedly in- not have access to hospital data. Based on assumptions, 83

33 creases their mortality rates [3] and worsens quality of the school team expects that specialists at the hospi- 84

34 life. Thus, nutritional status should have the full atten- tal will monitor Anna’s nutritional status. Occasion- 85

35 tion of healthcare professionals. The following case of ally, the dietician checks and adjusts the volume of the 86

36 Anna illustrates the omissions in clinical practice. enteral formula according to age, but only when the 87

37 Anna is a six-year old girl with bilateral mixed type mother asks for it. 88

38 Cerebral Palsy. She walks with a walking aid (Gross In this case, the earlier mentioned problems are ob- 89

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39 Motor Functioning Classification System (GMFCS) vious: 1) there is an insufficient amount of attention 90

40 level III) and has severe feeding difficulties because of given to nutritional status during doctor consultations, 91

2) no standardised nutritional assessment is carried out,

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41 oral-motor dysfunction, drooling, gastro-oesophageal
and 3) there is a lack in communication and manage- 93
reflux, recurrent periods of vomiting, and poor gastric

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42
ment considering feeding and nutritional status among 94
43 emptying. Anna is completely tube fed, but occasion-
healthcare professionals. 95
44 ally, she is given a few bites orally for taste (Eating and
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45 Drinking Ability Classification System (EDACS) level
V). Because of her swallowing problems, there is high
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46
3. A dutch survey 96
47 risk of aspiration, leading to frequent respiratory tract
infections. Despite extensive medical evaluation, par- To investigate the extent of these shortcomings in
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48 97
49 ents report that they never received an explanation for clinical practise, a survey was conducted as part of a re- 98
50 the recurrent periods of vomiting. liability study of the Dutch Eating and Drinking Abil- 99
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51 At the age of 5.5 years, Anna learned to walk and ity Classification System (EDACS, accepted, 2017). 100

52 is very proud of this accomplishment. Especially at Caregivers of 69 children with CP (child characteris- 101
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53 school, she wants to walk and play with her friends as tics, Table 1) answered the following questions: 102

54 much as possible. Anna temporarily loses the ability to 1. What are the current height and weight measure-
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103
55 walk during exhausting periods of frequent vomiting ments of your child? 104
56 and is unable to complete a full week of school atten- 2. How often are height and weight measured? 105
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57 dance. In addition, she also loses weight during these 3. Who, among your child’s healthcare providers, 106
58 periods. feels responsible for evaluation of the height and 107
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59 This case shows the negative consequences of poor weight? 108

60 nutritional status on activities and quality of life. The results are notable. Of the children, 36.2% 109
61 Furthermore, it illustrates nutritional care should be (25/69) suffered from malnutrition (WHO definition 110
62 optimized in healthcare networks, as set out hereafter: of height/weight scores z-score < −2), 30.4% (21/69) 111
63 To evaluate growth and nutritional status in “usual were measured less than yearly, and seven different 112
64 care”, Anna’s height has been measured with a stand- health care professionals were reported to be in the 113
65 ing calliper and weight has been measured with a scale lead (paediatrician, physiatrist, school nurse, child and 114
66 device while she could barely stand up straight. From adolescent healthcare doctor, neurologist, endocrinol- 115
67 the age of 4 years, measurements have been carried out ogist, physiotherapist). In 11.6% (8/69) of cases, par- 116

68 roughly every 6 months in an out-patient setting at pae- ents reported that they were responsible for the mea- 117

69 diatrician visits and have been recorded on a growth surements. The study results show that a fundamental 118

70 chart for typically developing children (Fig. 1). Re- problem exists in organising assessment of nutritional 119

71 viewing the results, the consulted physician was satis- status. It is unclear for parents whom of the healthcare 120

72 fied and therefore expanded visit intervals to once ev- professionals should be held responsible for nutritional 121

73 ery year. No other anthropometric measures or other assessment, how it should be documented, and how of- 122

74 (laboratory) diagnostic tests for nutritional assessment ten it should be carried out. 123
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D.A.C. Snik et al. / Nutritional care: The ‘poor child’ of clinical care in children with cerebral palsy 3

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Fig. 1. Growth chart anna.

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124 4. What can be measured? best indicator of the health and nutritional status of 137

a child [5]. Disturbances in health and nutrition, re- 138

125 Scarpato et al. are calling for a practical approach gardless of their aetiology, invariably affect the child’s 139

126 of nutritional assessment for children with CP [4]. It growth. Height and weight measurements necessary 140

127 is important that measurements are feasible in the out- to evaluate growth may be difficult to assess in chil- 141

128 patient setting, time efficient, inexpensive, and stress- dren with CP; e.g. because of joint contractures that 142

129 free for the child and the parents. Repeated and reliable might complicate reliable measurement of height. Fig- 143

130 measurements should be carried out to prevent under ure 1 (see the arrow) shows that in this case not all 144

131 or overdiagnosing, as well as starting nutritional inter- measurement points are in line with what can be ex- 145

132 vention when unnecessary, putting the child at risk of pected based on age and growth pattern. Children may 146

133 becoming overweight. also be wheelchair users impeding adequate weight as- 147

sessment. Thus, alternative approaches, like segmen- 148

134 4.1. Height and weight tal measurements, may be necessary. An example of 149

this is the calculation of approximate height from seg- 150

135 As stated by the World Health Organisation, in typ- mental measures like knee height [6]. After weight 151

136 ically developing children, growth monitoring is the and height are measured or estimated, they are plot- 152
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4 D.A.C. Snik et al. / Nutritional care: The ‘poor child’ of clinical care in children with cerebral palsy

Table 1
Demographics of participants
whom reference data were derived, were malnour- 168

ished. 3) Because of altered body composition, height- 169

Characteristics of children and n %
young people with cerebral palsy
for-weight and height-for-age measures do not prop- 170

(n = 69) erly inform the health care professional about available 171

Sex energy stores [7–9]. Therefore, solely depending on 172

Boys 41 55.3 height and weight measurements as markers for ‘good 173
Girls 28 44.7 nutritional status’ is insufficient in children with CP. 174
CP classification according to Thus, the European Society for Paediatric Gastroen- 175
SCPE
terology, Hepatology and Nutrition (ESPGHAN) com- 176
Spastic 51 73.9
Dyskinetic 2 2.9 mittee guidelines do not recommend the use of CP- 177

Ataxic 1 1.4 specific growth charts [10]. 178

Worster-drought syndrome 2 2.9

Mixed type 13 18.8 4.2. Body composition 179
GMFCS
I 9 13
Body composition, usually defined as the percent- 180
II 13 18.8

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III 6 8.7 age of fat mass and fat-free mass, is a more objec- 181

IV 27 39.1 tive indicator of available energy stores and there- 182

V 14 39.1 fore nutritional status [11,12]. Body composition can

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183

EDACS be calculated indirectly from: 1) the deuterium dilu- 184

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I 12 17.4 tion technique, 2) from dual-energy x-ray absorptiom- 185
II 24 34.8
etry (DXA) scans and, double indirectly from 3) an- 186
III 12 17.4
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IV 14 20.3 thropometric measures like BMI and skinfold mea- 187

V 7 10.1 surements [8,13–15] and 4) bioelectrical impedance 188

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Degree of assistance needed with analysis (BIA) [16–20]. The deuterium dilution tech- 189
eating and drinking nique and DXA (indirect techniques) are mainly used 190
Independent 25 36.2
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Requires assistance 29 42
in large-scale scientific studies because of their costs 191

Totally dependent 15 21.7 in terms of money and personnel. The double indirect 192

techniques (BMI, skinfold measurements and BIA) are

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Feeding technique 193

Tube feeding 5 7.2 easy to use in clinical practice but their precision on an 194
Oral feeding 59 59 individual level is questionable and needs to be opti- 195
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Tube and oral feeding 5 7.2

mised [8,13–20]. 196
Age
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Mean y 9y8m (SD = 3.91)

Range 3y3m 19y3m 4.3. Micronutrients 197
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SCPE, surveillance of cerebral palsy in Europe; GMFCS, gross mo-

tor function classification system; EDACS, eating and drinking abil- Along with the importance of ingesting enough fat, 198

ity classification system. carbohydrates, and proteins, sufficient intake of mi- 199
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cronutrients is crucial. Micronutrients consist of vita- 200

153 ted on standard growth charts. These charts, based mins, minerals, and trace elements. They are impor- 201

154 on healthy reference groups, can be used to monitor tant for many metabolic pathways and micronutrient 202

155 whether children remain in their growth curve, but they deficiencies may affect cognition, behaviour, social in- 203

156 may not be suitable for conclusions about desirable teraction, developmental outcomes and hence quality 204

157 growth and target height in children with CP. For ex- of life [21]. Children with CP often eat less and non- 205

158 ample, children with CP who have GMFCS levels II-V diversified food compared to typically developing chil- 206

159 are significantly shorter compared to ‘typically devel- dren, which puts them at risk for low micronutrient 207

160 oping’ children. In an attempt to correct for this differ- intake [22]. Also, when the child is exclusively tube 208

161 ence, CP specific growth charts were designed [3]. Un- fed, there is a risk of insufficient intake of micronutri- 209

162 fortunately, there are three issues that introduce bias: ents, because necessary amounts of micronutrients are 210

163 1) Segmental length formulas include some potential only met when enough volume is consumed. Related to 211

164 errors. For instance, when calculating body mass index oral-motor and gastrointestinal impairment, volume in- 212

165 (BMI), these errors are squared. 2) For the aforesaid take is often reduced in children with CP. To assess the 213

166 reasons of feeding problems leading to risk of malnu- micronutrient status of a child, a blood sample needs 214

167 trition, it is probable that some of the children from to be collected which can be uncomfortable. 215
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D.A.C. Snik et al. / Nutritional care: The ‘poor child’ of clinical care in children with cerebral palsy 5

Table 2
Red flag warning signs
Physical signs of undernutrition, such as decubitus skin problems, poor peripheral circulation
Weight for age z-score < −2
Triceps skinfold thickness < 10th percentile for age and sex
Mid-upper arm fat or muscle area < 10th percentile
Faltering weight and/or failure to thrive

216 5. What should be measured? dren with CP due to insufficient nutritional intake nec- 256

essary for their needs. The most important causes of in- 257
217 Reviewing the options and pitfalls of the different sufficient intake are feeding problems which are highly 258
218 measurement methods, it is a challenge to decide what prevalent in children with CP (depending on defini- 259
219 measuring methods are applicable in which children tion, age and heterogeneity of the researched popula- 260
220 and on what time interval. Valuing results in the ab- tion) [1,2]. Considering these facts, nutritional status 261
221 sence of optimal reference values complicates these should have the full attention of healthcare profession- 262
222 decisions even more. Until recently, there was no prac- als but this is not the case yet. 263
tical guideline for the clinical evaluation of nutritional

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223
Nutritional care in children with CP is complex, 264
224 status in children with CP. However, the ESPGHAN therefore, validation of practical tools for screening 265
225 working group has developed guidelines for the eval- and assessment of nutritional status should be a topic

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226 uation and treatment of gastrointestinal and nutritional of research. Subsequently, those tools should be made 267
complications in children with neurological impair-

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227
available and implemented in clinical practice (e.g. 268
228 ment [10]. Multiple suggestions and recommendations
through education of health care professionals). Be- 269
229 have been formulated with sometimes limited evidence
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cause body composition is an objective indicator of 270
230 to substantiate them.
available energy stores, research should focus on opti- 271
The working group suggests combining measure-
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231
mising measurement methods to determine body com- 272
232 ments and ‘red flag warning signs’ for the identifica-
position (using anthropometric measures or BIA) [24]. 273
233 tion of undernutrition in neurologically impaired chil-
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Furthermore, there is a desperate need among health 274

234 dren (Table 2). For now, this can be a practical and
235 easily applicable tool to identify malnutrition. How- care providers for explicit and clear agreements on or- 275

ganisation and communication considering nutritional

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276
236 ever, the identification of physical signs of undernutri-
237 tion and used anthropometric measurements are prone care for children with CP. 277

to interrater variability [23]. These ‘red flag warning

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238

239 signs’ have not been validated yet. Statement 4 of

Conflict of interest
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278
240 this guideline suggests that children should have an-
241 thropometry assessment at least every six months and
The authors have no conflict of interest to report. 279
242 that micronutrients are checked annually. Because this
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243 guideline has not yet been implemented in clinical

244 practice, the effects on nutritional management have
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