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　Original Contribution Kitasato Med J 2014; 44: 31-37　

Nutritional evaluation of children with severe motor andintellectual disabilities

Yoshito Fujitake,1 Toshiyuki Iwasaki,1 Noriko Suyama,2 Shigeko Endo,3 Mariko Arai,4

Miwako Sasaki,5 Masae Yazawa,5 Shigeyuki Otsu,1 Masahiro Ishii1

1 Department of Pediatrics, Kitasato University School of Medicine2 Department of Nutrition, Kitasato University Hospital3 Department of Clinical Laboratory, Kitasato University Hospital4 Department of Pharmacy, Kitasato University Hospital5 Department of Nursing, Kitasato University Hospital

Objective: The present study evaluated the nutrition of 10 children with severe motor and intellectualdisabilities who were hospitalized or had multiple hospitalizations and discharges over a period ofmore than 1 year.Methods: The authors compared the height, weight, presence of trace elements, daily caloric intake,and the rate of change in the blood analysis parameters for the nutritional evaluation among 6 patientswhose weights increased (increased group) and 4 patients whose weights decreased or showed nochange (non-increased group) and investigated the nutritional characteristics of these children withsevere motor and intellectual disabilities.Results: The patients' heights and weights at the start of the observation period were lower than theideal values (P < 0.01) because the prevention of obesity is crucial for maintaining the quality of lifeof children with severe motor and intellectual disabilities. Moreover, the rates of change in the dailyenergy showed no significant differences between the increased and non-increased groups. The ratesof change in the total protein and albumin levels in the non-increased group were significantly lowerthan those in the increased group (P < 0.05). The levels of 5 parameters (prealbumin, total cholesterol,hemoglobin, hematocrit, and iron) were lower than normal.Conclusions: These findings suggest that the rates of change in the total protein and albumin levels areuseful for nutritional evaluation in children with severe motor and intellectual disabilities. Theestimated caloric intake has to be carefully determined.

Key words: children with severe motor and intellectual disabilities, estimated caloric intake, nutritionalevaluation, nutrition support team, trace elements

Introduction

hildren with severe motor and intellectualdisabilities are defined in Japan as those with

intelligence quotients lower than 35 and a poorlymaintained standing posture, or those who are bedridden.1

Cerebral palsy (CP) is a major cause of this disorder.2

All of these patients need their families' and care providers'help for their daily life activities because they cannotmaintain their own posture by themselves or communicateusing verbal language. These patients frequently sufferfrom chronic diseases, such as epilepsy, recurrentinfectious diseases, and secondary osteoporosis.

Furthermore, they generally have to receive enteralfeeding using a nasogastric tube or a gastric fistula becauseof difficulties swallowing food. Many of these patientsneed assistance in every aspect of daily living and requiretime-consuming medical and nursing care.3 Thesepatients often cannot stay at home due to the difficultiesassociated with their care and nursing. Therefore, theyare often hospitalized for long periods.

It is difficult to evaluate the nutritional needs of thesechildren due to the remarkable differences in their growth,development, and activity. However, it is important toestimate the relation between nutrition and growth forhealthy children and patients with CP, which is associated

C

Received 27 January 2013, accepted 30 August 2013Correspondence to: Toshiyuki Iwasaki, Department of Pediatrics, Kitasato University School of Medicine1-15-1 Kitasato, Minami-ku, Sagamihara, Kanagawa 252-0374, JapanE-mail: tiwasaki@kitasato-u.ac.jp

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with severe motor and intellectual disabilities. It hasbeen suggested that it is especially important to payattention to the fat ratio of children with severe motorand intellectual disabilities who have enteral feeding usinga nasogastric tube4 rather than a simple comparison oftheir weight because their caloric intakes are much higherthan those for healthy children.5 In particular, childrenwith the spastic type of CP have been shown to have avery high energy expenditure.6 On the other hand, therewere some reports that have described a low energyconsumption for such children, and they had an excessivedietary intake with enteral feeding through a gastricfistula.7

Trace elements play important roles in the maturationof brain cells and nervous tissue.8 The need forsupplementary vitamins is often noted because bedriddenchildren with severe motor and intellectual disabilitiesoften develop scurvy9 and bone metabolic disorders;10

and bedridden CP patients often develop secondaryosteoporosis.11 Moreover, there is an elevated risk forrickets induced by antiepileptic drugs.12

All the patients in the present study were diagnosedwith a similar spastic type of CP, respired spontaneously,and had not suffered from any severe infections sincethey were hospitalized. It was not easy for them to bedischarged from Kitasato University Hospital becausetheir families could not care for or treat them at home.The study, therefore, allowed for a comparison of factorsthat influence nutrition due to long-term bedridden statusin patients with minimal differences in activity. Thestudy compared the height and weight of each patient,the method and type of nutrition, and presence of traceelements, daily caloric intake, and blood test results toevaluate the nutritional status of these children whorequired prolonged hospitalization.

Methods

Patient selectionSubjects were chosen from the population of childrenwith severe motor and intellectual disabilities who werehospitalized in Kitasato University Hospital during theobservation period, and whose severity of disabilitieswas classified. The subjects finally selected for inclusionin the present study were 10 children with severe motorand intellectual disabilities (5 males; 5 females; meanage, 8.8 years), who had been admitted to the pediatricdepartment of Kitasato University Hospital from August2008 through July 2010. The severity was classifiedaccording to the criteria defined by Suzuki et al.1 Theselection of the subjects was assisted by the Nutrition

Fujitake, et al.

Support Team (NST) at Kitasato University Hospital.The causes of the children with severe motor and

intellectual disabilities were CP due to asphyxia orhypoxia of the brain in 7 cases, encephalitis orencephalopathy in 2 patients, and an unidentified illnessin 1 patient. All the patients presented with spasticparalysis. The reasons for their hospitalization werepneumonia or sepsis in 5 cases, and 3 patients had frequentseizures or status epilepticus, and a combination of bothin 2 cases. However, none suffered any major infectionsafter they were admitted. During the entire period ofhospitalization, each of these 10 patients spent their timein bed or in a wheelchair and received physicalrehabilitation of nearly the same loading of caloricconsumption. All of the patients had spontaneousrespiration, so none of them required a respirator.

The ideal values of height and weight were calculatedfrom the averages of each age group in the normalJapanese population. Ideal required energy levels thatwere used for comparisons were the "basal metabolicrate (BMR) + energy retention (ER)" according to theguidelines of the Ministry of Health, Labour and Welfareof Japan and the "BMR × 1.32" that was reported byHogan.6 Both of these values were used to determine theideal daily caloric intake for these 10 patients.

The patients were classified into 2 groups: those whoshowed an increase in weight (increased group, n = 6)and those who did not (non-increased group, n = 4).

Study designEach examination and measurement was performed afew days before discharge and 1 year before the lastexamination. The examination included: total protein(TP), albumin (Alb), retinol-binding protein (RBP),prealbumin (PAB), total cholesterol (T-Chol),hemoglobin (Hb), hematocrit (Ht), iron (Fe), and zinc(Zn), which are frequently evaluated in nutritionalevaluations. The maximum and minimum of the generalnormal limits were determined according to the normalvalues established for each age group.

The study compared the height and weight, traceelements, daily caloric intake, and the biochemical valuesdescribed above between the two groups. The rates ofchange were calculated as follows.

Value at discharge−Value 1 year priorRate of change (%) = ×100

Value 1 year prior

The present study was performed according to theprinciples of the Declaration of Helsinki. The objectiveof the study was explained to the patients' parents, whoprovided written informed consent.

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Statistical analysesThe statistical analyses were performed using thenonparametric test, the Mann-Whitney U test betweenthe increased and the non-increased groups, andWilcoxon's signed rank test between the actual and idealvalues to determine significant differences for the twocomparisons. Excel Statistics 2010 (Social SurveyResearch Information, Tokyo) with Microsoft Excelsoftware programs were used for the analyses.

Results

The patients' data are summarized in Table 1. All of thepatients received enteral feeding and supplemental traceelements, and none of them had any problems withdigestion or absorption. Five patients were fed through anasogastric tube, and the other 5 through a gastric fistula.

The patients' heights and weights were compared withthe ideal values suitable for their ages (Figure 1).

Table 1. The data of 10 children with severe motor and intellectual disabilities

Age Tube feeding Cause of Height BW CI Fe intake Zn intakeClassification Gender

(yrs) type admission (cm) (kg) (kcal) (mg/day) (mg/day)

I M 18 GF Sepsis and SE 138 23.6 1,100 7 7.2I M 2 NGT Sepsis 77 8.9 700 10.5 7I M 14 NGT SE 110 22.9 450 3.1 3.3I M 14 GF FS 127 22 800 4.8 4.8I F 4 NGT Pneumonia 84.5 8.5 600 5.8 9.6I M 5 NGT Pneumonia 109 19.5 400 4 6.6

N F 5 GF Pneumonia 85 8.9 600 3.6 3.6N F 11 NGT SE 134 22.6 1,100 6.6 6.6N F 5 GF Pneumonia 99 14.2 400 2.4 2.4N F 10 GF Sepsis and SE 111 19.5 800 4.8 4.8

BW, body weight; CI, caloric intake; FS, frequent seizures; GF, gastric fistula; I, increased group; N, non-increased group; NGT,nasogastric tube; SE, status epilepticus

Figure 1. Comparison between the actual and ideal values of height, weight, and daily estimated energy. The upper and lowerborders of each rectangle indicate +1SD and -1SD, respectively. The horizontal bars in the rectangles indicates median values.Error bars represent maximum and minimum values. Wilcoxon's signed rank test showed significant differences between theactual and ideal values for height and weight. *P < 0.01.

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Fujitake, et al.

Figure 2. Comparison between theincreased and non-increased groups inthe daily actual caloric intake. Theupper and lower borders of eachrectangle indicate +1SD and -1SD,respectively. The horizontal bars in therectangles indicate median values. Errorbars represent maximum and minimumvalues. The rate of change in the dailycaloric intake was high in both groups.There were no significant differencesbetween the groups according to theMann-Whitney U test.

Figure 3. Blood biochemical test. The openand closed circles indicate patients in theincreased and non-increased groups,respectively. Circles aligned on the right ineach rectangle represent values examined a fewdays before discharge, whereas those alignedon the left represent values examined 1 yearbefore discharge. Shaded areas indicate normalranges. The TP, Alb, RBP, and Zn levels werewithin the general normal ranges; however, thePAB, T-Chol, Hb, Ht, and Fe levels were lowerthan the normal ranges.

TP, total protein; Alb, albumin; RBP, retinol-binding protein; PAB, prealbumin; T-Chol, totalcholesterol; Hb, hemoglobin; Ht, hematocrit;Fe, iron; Zn, zinc.

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Figure 4. Comparison of the rates of change in the results of the biochemical tests. The upper and lower borders of each rectangleindicate +1SD and -1SD, respectively. The horizontal bars in the rectangles indicate median values. The error bars represent maximumand minimum values. The Mann-Whitney U test demonstrated that the rates of change in the TP and Alb levels were significantly lowerin the non-increased group. **P < 0.05

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Fujitake, et al.

Wilcoxon's signed rank test revealed significantdifferences between the actual and ideal values (P =0.007). The patients' heights and weights weresignificantly lower than those of ideal values at the startof the study. However, there were no significantdifferences between the patients' actual daily caloricintake and their ideal intake (BMR + ER; P = 0.721,BMR × 1.32; P = 0.139). Furthermore, the rates ofchange in the daily caloric intake showed no statisticallysignificant differences between the increased and non-increased groups according to the Mann-Whitney U test(Figure 2).

The blood test results examined a few days beforedischarge and 1 year prior were compared with the normalrange (Figure 3). The subjects' TP, Alb, and RBP levelswere within the general normal limits; however, the serumPAB, T-Chol, Hb, Ht, and Fe values tended to be lowerthan the normal ranges. No significant difference wasnoticed between the increased and non-increased groupsor between both timepoints.

Finally, the rate of change for each parameter wascompared between patients in the increased and non-increased groups using the Mann-Whitney U test (Figure4). The rates of change of TP and Alb in the non-increasedgroup were significantly lower compared with those inthe increased group (P = 0.011 and P = 0.033,respectively). There were dispersions of the result in therates of change of the PAB and RBP. Moreover, theirparameters including T-Chol were slightly lower in thenon-increased group compared with those in the increasedgroup but were not statistically significant. The bloodcell counts and trace elements, except for Fe, showedminimal differences, and the rates of change were closeto 0. The rate of change of Fe was elevated in bothgroups, and the rate in the non-increased group increasedhigher than that in the increased group, but the differencewas not statistically significant.

Discussion

The height and weight of children with severe motor andintellectual disabilities were compared with the idealvalues, and both height and weight were found to belower than the ideal values. It is difficult to define theestimated caloric intake in children with severe motorand intellectual disabilities because it is difficult toevaluate the energy used for hypertonia, convulsions,the voluntary movements,13,14 and the energy expendedduring labored breathing, all of which are variable amongpatients. Therefore, there is an increased risk thatinappropr ia te nu t r i t ion may cause chron ic

hypoalimentation.15 To avoid this risk, the nutritionsupport team (NST) should evaluate the patients'nutritional status and advise physicians about appropriatenutrition.

On the other hand, excessive care and nursing inchildhood may be associated with obesity later in life.16,17

Lifestyle-related diseases, including liver dysfunction andhypertension with fatty liver, and redundant perithoracicfat, can cause labored breathing, especially in childrenwith severe motor and intellectual disabilities. Obesitybecomes a serious problem for the parents, familymembers, and care providers assisting these patients. Theprevention of obesity is crucial for maintaining the qualityof life of a child with severe motor and intellectualdisabilities.18 Therefore, it is necessary to avoid excessiveenergy intake and to use the NST's suggestions.

The patients were classified into the increased andthe non-increased groups, and their nutritional status werecompared between the two groups. Daily caloric intakeincreased in both groups however, the rates of changewere not statistically different between the two groups.Consequently, the caloric consumption in the non-increased group was higher than expected. Therefore, itis necessary to observe the nutritional status and growthrate of each patient frequently to re-evaluate the nutritionalintake.

Insufficient intakes of vitamins and trace elements,which have been reported in patients on long-term enteralfeeding, have attracted attention. Insufficient intake ofvitamins and trace elements such as iodine, selenium,and Zn is associated with not only deleterious effects onthe nervous system but also anemia,18 scurvy,9 and bonemetabolism disorders10 such as rickets.12 In the presentstudy, we found that the patients ingested the requiredlevels of Fe and Zn, but that blood levels of Fe and Zn inmany children were lower than the normal ranges.

Children in this study consumed a polymeric formula.When focused on Fe and Zn, the contents of thesecontained in the polymeric formula available in Japanare 0.6 mg/100 ml each. The required intake of Fe is 3.5−4 mg/day in infants and 4.5−8 mg/day in school-agechildren and adolescents, while that of Zn is 3−5 mg/day and 6−9 mg/day, respectively. Therefore,considering the intake of the polymeric formula, the levelsof both are insufficient based on the nutritionalrequirements in some patients. In this occasion,supplements to provide sufficient trace elements shouldbe considered.

The TP, Alb, and RBP levels were largely withinnormal ranges, but those of PAB, T-Chol, Hb, and Htwere lower than the normal ranges. On the other hand,

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the rates of the changes in the TP and Alb levels weresignificantly lower in the non-increased group comparedwith those in the increased group. PAB and RBP levelsare reported to indicate early nutritional status.19,20

However, based on the present study, longitudinalobservation of these two factors is important and effectivefor the nutritional evaluation of children with severe motorand intellectual disabilities. Rates of changes in PABand RBP were also lower in the non-increased groupcompared with those in the increased group, however,they were not statistically significant. Therefore, therates of changes in the TP and Alb levels may be effectivemarkers to assess patients' long-term nutritional status.

In summary, nutritional evaluation of children withsevere motor and intellectual disabilities is difficult dueto the remarkable differences in the growth and activityof subjects during childhood. The present studydemonstrated that the rates of changes in TP and Albvalues were effective to determine the long-termnutritional evaluation of each patient.

Acknowledgements

The abstract of this paper was presented in part at the 14th

Annual Meeting of the Japan Society of Metabolism andClinical Nutrition in Yokohama, Japan, January 2011.

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Nutrition of severely handicapped children