[Show abstract][Hide abstract] ABSTRACT: Our aim was to study the prevalence and characteristics of constipation in children with profound multiple disabilities, as data in this area are scarce.
A cross-sectional observational study was performed in specialized day-care centres and schools in the Netherlands. The study included 152 children (81 males, 71 females; mean age 9 y 6 mo, SD 4 y 6 mo). Intellectual disability ranged from moderate (7%) to profound (52%) in all participants who also had severe motor disabilities (83% classified at Gross Motor Function Classification System level V). We collected data on defaecation characteristics, food and fluid intake, and laxative consumption using standardized bowel diaries and interviews. Constipation was defined as (1) scybalous, pebble-like, hard stools in over a quarter of defaecations in combination with a defaecation frequency of less than three times per week during a 2-week study period; (2) large stools palpable on abdominal examination; or (3) laxative use or manual disimpaction of faeces.
Of the studied population, 57% were constipated and 55% used laxatives, 27% of whom showed symptoms of constipation. Daily intakes of water and fibre were below the required standards in 87% and 53% of participants respectively, without a proven relation to constipation.
Constipation is a common problem in children with severe disabilities. Laxative use is high but dosing is frequently inadequate to prevent symptoms.
[Show abstract][Hide abstract] ABSTRACT: The majority of children with cerebral palsy and intellectual disability has a poor nutritional state compared with their healthy peers. Several studies have found reduced daily energy intake in this population. The hypothesis is tested that low daily energy intake correlates with poor nutritional state.
In a population-based sample of 176 children with severe generalized cerebral palsy and intellectual disability (mean age 10 years, SD 2 months; 16% GMFCS score 4; 84% GMFCS score 5) anthropometric parameters (weight, upper arm and tibia length, biceps, triceps, subscapular and suprailiacal skinfold thickness, mid upper arm circumference) were measured and dietary intake was registered.
No correlation was found between energy intake(%EAR) and anthropometric Z-scores. Higher age, female gender, mobility, and to a lesser extent the absence of tube feeding predicted lower anthropometric Z-scores.
In children with severe generalized cerebral palsy and intellectual disability nutritional state is not primarily determined by energy intake. Differences in energy expenditure presumably play an important role, although more research is needed to clarify the complex association between energy intake and nutritional state. Individualized nutritional care is suggested, preferably based on energy expenditure, in order to avoid malnutrition, but also overweight.
[Show abstract][Hide abstract] ABSTRACT: This study assessed the clinical indicators and severity of dysphagia in a representative sample of children with severe generalized cerebral palsy and intellectual disability. A total of 166 children (85 males, 81 females) with Gross Motor Function Classification System Level IV or V and IQ<55 were recruited from 54 daycare centres. Mean age was 9 years 4 months (range 2 y 1 mo-19 y 1 mo). Clinically apparent presence and severity of dysphagia were assessed with a standardized mealtime observation, the Dysphagia Disorders Survey (DDS), and a dysphagia severity scale. Additional measures were parental report on feeding problems and mealtime duration. Of all 166 participating children, 1% had no dysphagia, 8% mild dysphagia, 76% moderate to severe dysphagia, and 15% profound dysphagia (receiving nil by mouth), resulting in a prevalence of dysphagia of 99%. Dysphagia was positively related to severity of motor impairment, and, surprisingly, to a higher weight for height. Low frequency of parent-reported feeding problems indicated that actual severity of dysphagia tended to be underestimated by parents. Proactive identification of dysphagia is warranted in this population, and feasible using a structured mealtime observation. Children with problems in the pharyngeal and esophageal phases, apparent on the DDS, should be referred for appropriate clinical evaluation of swallowing function.
[Show abstract][Hide abstract] ABSTRACT: During the analysis of interrupter resistance (R(int))-measurements, most authors reject post-interruption tracings based on the shape of the pressure-time and flow-time curves. However, objective criteria for rejection are lacking. We aimed to formulate explicit rejection criteria that correspond to eyeballing the curve pattern (daily practice), in order to simplify the analysis. Inter-observer agreement within and between both methods was studied. Results obtained with the developed rejection criteria were compared to those of current practice (eyeballing) using 54 measurements (807 interruptions) of children with severe neurological impairment. Inter-observer agreement on rejection was similar using the criteria or eyeballing (85.6% vs. 82.8%). Using the criteria, more individual interruptions were rejected (43.4% vs. 29.8% using eyeballing), while discarding total measurements (<5 remaining interruptions) was similar (9.2% vs. 7.4% using eyeballing). Results using only the criteria for pressure-time curves were comparable to eyeballing. Outcome values were comparable between any of the used rejection methods and not rejecting at all. In this first detailed study on rejection of post-interruption tracings, explicit rejection criteria were developed. None of the rejection methods influenced the outcome value relevantly. However, rejection criteria can contribute to the standardization of the R(int) technique and simplify decision-making in daily practice.
[Show abstract][Hide abstract] ABSTRACT: The need is strong for an accurate and easy-to-perform test to evaluate the nutritional state of children who have a severe generalized cerebral palsy, defined as a severe motor handicap and an intellectual disability. For that purpose, we determined the feasibility of bioelectrical impedance analysis (BIA) in these children and evaluated their nutritional state.
BIA recordings were done in 35 children who had a severe generalized cerebral palsy using a single-frequency BIA device. In addition, arm span and body weight were determined. Components of feasibility were whether the children tolerated the recording and felt comfortable and whether the recording could be performed in a reproducible way (prescribed body position and stable resistance and reactance values). All recordings were performed at specialized children's daycare centers or schools.
One child (3%) did not tolerate the recording, whereas the remaining 34 children (71%) felt comfortable. Most children (74%) could be placed in the prescribed position, but stability of resistance values was low. Stability of resistance values was positively influenced by older age, a quiet location for the recording, feeling comfortable, and a small number of people in the room. For 29 children, we were able to calculate values for total body water and fat-free mass. Compared with age-matched reference values, these values were significantly decreased in all age groups.
The present pilot study has demonstrated that BIA recording is a feasible nutritional assessment method in children who have severe generalized cerebral palsy. Because the test procedure was well tolerated by most children, its value for use in this specific population deserves further investigation.
[Show abstract][Hide abstract] ABSTRACT: In children with severe generalized cerebral palsy, pneumonias are a major health issue. Malnutrition, dysphagia, gastro-oesophageal reflux, impaired respiratory function and constipation are hypothesized risk factors. Still, no data are available on the relative contribution of these possible risk factors in the described population. This paper describes the initiation of a study in 194 children with severe generalized cerebral palsy, on the prevalence and on the impact of these hypothesized risk factors of recurrent pneumonias.
A nested case-control design with 18 months follow-up was chosen. Dysphagia, respiratory function and constipation will be assessed at baseline, malnutrition and gastro-oesophageal reflux at the end of the follow-up. The study population consists of a representative population sample of children with severe generalized cerebral palsy. Inclusion was done through care-centres in a predefined geographical area and not through hospitals. All measurements will be done on-site which sets high demands on all measurements. If these demands were not met in "gold standard" methods, other methods were chosen. Although the inclusion period was prolonged, the desired sample size of 300 children was not met. With a consent rate of 33%, nearly 10% of all eligible children in The Netherlands are included (n = 194). The study population is subtly different from the non-participants with regard to severity of dysphagia and prevalence rates of pneumonias and gastro-oesophageal reflux.
Ethical issues complicated the study design. Assessment of malnutrition and gastro-oesophageal reflux at baseline was considered unethical, since these conditions can be easily treated. Therefore, we postponed these diagnostics until the end of the follow-up. In order to include a representative sample, all eligible children in a predefined geographical area had to be contacted. To increase the consent rate, on-site measurements are of first choice, but timely inclusion is jeopardized. The initiation of this first study among children with severe neurological impairment led to specific, unexpected problems. Despite small differences between participants and non-participating children, our sample is as representative as can be expected from any population-based study and will provide important, new information to bring us further towards effective interventions to prevent pneumonias in this population.