5a: ESPGHAN WG recommends the use of the dietary reference standards for typically developing children to estimate the caloric needs for children with NI.
VOTES: 8, 8, 8, 9, 9, 7, 8, 8, 7, 7, 8, 7, 6, 8, 9 (accepted)
5b: ESPGHAN WG recommends regular monitoring of body weight and fat mass as an indicator of energy requirements.
VOTES: 7, 7, 9, 9, 8, 9, 8, 9, 8, 9, 9, 7, 7, 8, 8 (accepted)
WHAT ARE THE REQUIREMENTS FOR PROTEIN IN CHILDREN WITH NEUROLOGICAL IMPAIRMENT?
Protein requirements for children with NI are similar to the protein requirements of unaffected children (66,68). The DRIs are adequate for this group of children. Increased protein is needed if decubitus ulcers are present. Problems with protein intake may arise when calorie needs are low; it may be difficult to provide adequate protein in tube-fed children who require a very low calorie intake to prevent overfeeding. A higher protein formula or a protein supplement should be used with these children (66).
In preschool-aged children with NI the tube-fed, nonambulant children have lower protein intakes compared with orally fed children (69). Schoendorfer et al (70) examined differences in protein intake and a variety of protein metabolism indices in children with NI compared with controls. Despite all children consuming more than recommended levels, children with CP had reduced levels of protein metabolic indices (albumin, creatinine, and urate) versus controls. Data showed potentially greater protein metabolism issues in enterally fed children, compared with the other groups. Schoendorfer et al (70) reported decreased levels of albumin and urea in NI enterally fed group compared with NI orally fed and control group (70). The children with NI had reduced levels of plasma urate, and many with high-level cognitive impairment, when compared with typically developed children.
In severely undernourished patients the protein intake may be augmented to 2 to 2.4 g · kg−1 · day−1(56). In 1 study, term and preterm infants fed with 120% of the recommend daily allowance showed an increased head circumference and corticospinal tract diameter (71). Commercially available sip feeds (oral nutritional supplement) are an easy way to add proteins, with or without fibers and micronutrients (56). Dietary supplementation with glucose polymer and/or long-chain triglycerides or use of hypercaloric or high-density feed is required in poor nutrition or growth failure (59).
6a: ESPGHAN WG recommends the use of the DRI for protein in typically developing children to estimate the appropriate protein intake for children with NI.
VOTES: 7, 8, 8, 8, 9, 9, 9, 8, 9, 8, 8, 8, 8, 8, 8 (accepted)
6b: ESPGHAN WG recommends the use of supplementary protein intake in specific clinical situations such as decubitus ulcers or in children with a low calorie requirement.
VOTES: 9, 8, 7, 9, 8, 9, 9, 9, 9, 8, 9, 8, 8, 9, 9 (accepted)
WHAT ARE THE REQUIREMENTS FOR FLUID IN CHILDREN WITH NEUROLOGICAL IMPAIRMENT?
Children with NI may have an impaired hydration status. Body composition is altered in children with NI; a decrease in body cell mass accompanies an expansion of the extracellular fluid (59). One study showed that children with NI (n = 35, aged 9–13 years) had a reduction in salivary flow rate (50%), together with an increase in salivary (50%), plasma (3%), and urine osmolality (20%) versus a control group (n = 27 nondisabled children, ages 10–12 years). Salivary flow rate was negatively correlated with the salivary, plasma, and urine osmolality, whereas salivary osmolality correlated positively with plasma and urine osmolality (72). Children with NI can present low salivary flow rate, pH, and buffer capacity (72). NI individuals appear to exhibit impaired hydration due to compromised oral motor function (73).
7: ESPGHAN WG recommends that careful attention should be paid to hydration status, as children with NI are at risk of dehydration for a variety of reasons (eg, inability to communicate thirst, drooling, unsafe swallow).
VOTES: 9, 9, 9, 9, 8, 9, 9, 8, 9, 9, 9, 8, 8, 9, 9 (accepted)
WHAT ARE THE REQUIREMENTS FOR MICRONUTRIENTS IN CHILDREN WITH NEUROLOGICAL IMPAIRMENT?
The monitoring of micronutrient status in children with NI may have a substantial and measurable impact on their nutritional adequacy, hospital costs, and future outcomes (74). Micronutrient deficiencies (calcium; iron; zinc; vitamins C, D, and E; selenium) are common, especially in children who are exclusively tube fed. Many children with NI require less energy to avoid being overweight and, as a consequence of a reduced energy intake, their micronutrient intake can be less than their daily requirements. Essential fatty acid (FA) deficiency may also be related to suboptimal energy intake (1).
There was no difference in energy, protein, iron, zinc, copper, or folate intake before and 6 months after gastrostomy placement (75). No change in Zn, Fe, and Cu and in liposoluble vitamins were noticed in patient with NI fed with or without fiber-supplemented formula (76). Compared to a reference group, patients with NI had low concentration of docosaenoic acid, linoleic acid, and total n-6 FA, whereas arachidonic acid, eicosapentaenoic acid, n-3 FA concentrations were similar. After a 6-month supplementation of docosaenoic acid, eicosapentaenoic acid and n-3 FA levels were higher than the reference group, whereas linoleic acid and total n-6 FA remained lower (1).
Children with disabilities are at greater risk of iron deficiency as their diets are often limited, especially if the diet is based largely on cow′s milk. Only 46% of children with disabilities achieved 100% of their recommended nutritional intake (53). The increased incidence of iron-deficiency anemia in children with NI with diets low in iron supports the conclusion that this is secondary to low iron intake and decreased iron absorption. Prepared liquid diets may include foods that are a poor source of iron (milk, cheese, cream, yoghurt, rice) or that inhibit iron absorption (vegetables, pulses, grains, cereals) (77). The recommended daily intake of iron is 10 mg/day in children (7–10 years), 12 mg/day adolescent boys (15–19 years), and 15 mg/day in adolescent girls (15–19 years) (65). In the treatment of iron deficiency in children with NI it is reasonable to provide iron supplementation as the first diagnostic and therapeutic measure in such patients. Endoscopic procedures should be postponed for a later stage, unless there are clinical or laboratory findings (such as fecal occult blood) suggestive of GI blood loss (77).
8: ESPGHAN WG recommends use of the DRI for micronutrients in typically developing children to estimate the appropriate micronutrients intake for children with NI.
VOTES: 9, 9, 8, 8, 9, 9, 8, 8, 9, 9, 7, 7, 6, 8, 9 (accepted)
GASTROINTESTINAL ISSUES (DYSPHAGIA/ORAL MOTOR DYSFUNCTION, CONSTIPATION, DYSMOTILITY AS GASTROESOPHAGEAL REFLUX DISEASE)
Dysphagia/Oral Motor Dysfunction: How to Define It?
Oropharyngeal dysfunction (OPD) is defined by the presence of disturbances in one of more of the 3 phases of swallowing (oral, pharyngeal, and esophageal) and is common amongst children with NI, with reported prevalences in excess of 90% (78,79). In a study of 166 children with NI the prevalence of dysphagia was 99% with 8% classed as mild, 76% moderate to severe, and 15% profound dysphagia. In agreement with other studies dysphagia appears to be positively correlated with the severity of motor impairment (79–82). The presence of OPD is often suggested by the clinical picture, the evaluation of which should include the feeding history from early infancy (eg, problems in sucking and swallowing (78)). In a large study of children with NI, 27% of mothers of children referred for advice on their present swallowing difficulties stated that they did not recall any suckle feeding problems. The present study suggested there was no association between the severity of present swallowing difficulties and whether infants had suckle fed well or experienced severe difficulties (83). In addition to swallowing dysfunction children with NI may display sialorrhea, coughing, multiple swallows, gurgly voice, wet breathing, gagging, and choking and alterations in appetite, feeding difficulties, and prolonged feeding times (81,84,85). Many of these symptoms are associated with dysfunction in the pharyngeal phase of swallowing, more significant OPD, and poorer long-term prognosis.
The mainstay of evaluation of OPD has been the direct observation of meal times with or without the use of standardized and validated scoring systems. Although a number of scoring systems have been suggested to have good clinical utility including Eating and Drinking Ability Classification System, the Schedule for Oral Motor Assessment, Dysphagia Disorders Survey, and the Functional Feeding Assessment, this remains to be validated in large high-quality studies (80,82,86–91).
Lip functions play an important role in oral stages of feeding. Problems with incomplete lip closure during swallowing, low lip and suction pressure, and prolonged delay between the suction and propelling stages have been described (92,93). Furthermore, malocclusion of teeth may also contribute with preparation of food for swallowing (94).
9. ESPGHAN WG suggests considering OPD in all patients with NI even in the absence of obvious clinical signs and symptoms.
VOTES: 8, 9, 9, 9, 9, 8, 9, 8, 9, 9, 7, 7, 9, 9, 9 (accepted)
How to Evaluate Oral Motor and Sensory Function?
Videofluoroscopy (VFS) remains one of the key investigations for the assessment of OPD with a number of studies supporting its utility to identify discoordinate pharyngeal motility and silent aspiration in the diagnostic work-up of children with neurodisability and to guide effective feeding strategies (95–98). VFS may also be used to assess other parameters that relate to dysphagia and impaired feeding, including reduced lip closure, inadequate bolus formation, residue in the oral cavity, delayed triggering of pharyngeal swallow, reduced larynx elevation, coating on the pharyngeal wall, delayed pharyngeal transit time, and multiple swallows (99). Although ultrasound and electrophysiology have been suggested as practical alternatives, or additional tests, to more established methods of assessment their utility still remains to be confirmed (100–104). Although data on the use in children with OPD and NI are limited, VFS has also been combined with high-resolution esophageal manometry to be more discriminating in identifying specific defects and potentially improve clinical utility (105). When there is a high suspicion of an abnormal pharyngeal phase of swallowing but the VFS is normal or where it is difficult to differentiate between upper esophageal sphincter function and pharyngeal dysmotility, combined modalities (eg, videomanometry) could be considered if appropriate equipment and expertise are available.
GI endoscopy is not routinely used in children with NI to investigate the cause for dysphagia. Fiberoptic endoscopy has been used to detect aspiration and penetration of the upper respiratory tract (106). The presence and nature of esophageal dysmotility in NI is not well studied, although studies utilizing esophageal 24-hour pH monitoring and impedance and manometry have suggested it may be common in NI (107,108). Most recently, impedance measurements have been used to detect alterations in flow characteristics of pharyngeal swallow that have the potential to predict to deglutitive aspiration risk (109).
10a: ESPGHAN WG suggests including both feeding history starting from early infancy and direct visual assessment of feeding carried out by appropriately trained professionals. Such professionals would generally consist of speech and language therapists but could include medical doctors, nurses, dieticians, or GI physiologists trained or highly experienced in evaluating oropharyngeal function.
VOTES: 9, 8, 8, 8, 9, 9, 9, 8, 9, 9, 9, 9, 9, 9, 9 (accepted)
10b: ESPGHAN WG recommends the use of VFS in which there is suspicion of an abnormal pharyngeal phase of swallowing and/or concerns about aspiration. Where available this could be combined with high-resolution esophageal manometry to increase diagnostic yield.
VOTES: 8, 9, 8, 9, 9, 8, 7, 7, 8, 9, 8, 9, 8, 9, 7 (accepted)
What Is the Treatment of Oropharyngeal Dysfunction?
Management of dysphagic children involves an appropriately skilled multidisciplinary team to support treatment strategies. A Cochrane review undertaken to examine the effectiveness of interventions for OPD in children with NI was only able to identify 3 randomized or quasirandomized controlled trials. Overall, the review concluded that there was insufficient high-quality evidence to provide conclusive results about the effectiveness of any particular type of oral motor therapy and larger-scale randomized trials were needed (110).
Management should aim to optimize oral ingestion, where this has been shown to be safe, and address the behavioral expression of the many different pathologies causing OPD namely: resistance to accepting food orally; lack of energy and endurance to do the “work” of eating; and oral motor disabilities resulting in an inability to produce the necessary motor skills for ingestion (111).
Modifications of Feeds and Feeding Time
It is likely that a significant proportion of children with NI will be managed by modification of time allocated to feeding, posture, and feed consistency and content to provide safe feeding and limit complications such as aspiration. A cross-sectional, population-based cohort study comprising 99 children with NI (65 boys, 35 girls) aged 18 to 36 months showed that 39% of the children were on modified feed textures. Those with poorer gross motor function tended to receive a greater proportion of energy from fluids in their diets and fewer chewable foods compared to less affected children. Fluids, however, represented a texture most associated with OPD and being identified as unsafe (112).
Speech and Language Therapy
Speech and language therapy often forms the mainstay of treatment offered to children with neurodisability. Oral sensorimotor therapies aim to improve the individual and combined functioning of the lips, cheeks, tongue, and pharyngeal structures. Hirata and Santos (113) performed a systematic review of the medical and speech therapy literature on the rehabilitation of OPD in children with NI spanning 1977 to 2010 and found a paucity of studies addressing the therapeutic rehabilitation of oropharyngeal dysphagia in children with CP. Compared to control treatments, sensorimotor interventions have been variably shown to result in some improvement in eating and feeding time but not in drinking skills. Children appeared to maintain their weight but did not show catch-up growth (114–117).
11: ESPGHAN WG suggests considering speech and language interventions in the treatment of NI children with OPD, and/or where there is need for modification of the consistency of feeds.
VOTES: 8, 8, 8, 8, 7, 8, 9, 7, 7, 9, 8, 9, 9, 8, 9 (accepted)
How to Monitor Oropharyngeal Dysfunction?
In terms of long-term prognosis, the severity of OPD appears to remain relatively stable and gross motor function appears to be its best predictor (118–121). Feeding data were collected from 23 children with NI using parent questionnaires at 6-month intervals during 30 months. Children with NI with severe oral motor involvement had marked and pervasive feeding difficulties, but this appeared to remain relatively stable over time (119). Although disorders persist into adolescence, improvement has mainly been observed when only the oral phase of swallowing is affected. Involvement of the pharyngeal phase suggests that further investigation is warranted (121). The studies highlight the need for proactive screening of all young children with NI, including those with mild impairments, to improve growth and nutritional outcomes and respiratory health (80). Oral pharyngeal dysfunction is one of the main factors for the reduction of oral food intakes and so a risk factor for undernutrition.
12: ESPGHAN WG recommends regular monitoring of growth and nutritional status in children with NI with oral pharyngeal dysfunction.
VOTES: 8, 9, 8, 9, 9, 8, 7, 6, 7, 9, 8, 8, 7, 8, 8 (accepted)
GASTROESOPHAGEAL REFLUX DISEASE
How to Diagnose Gastroesophageal Reflux Disease?
GORD is a problem commonly seen in children with NI with reported incidence as high as 70% (122–125). Because of the high frequency of GORD and fragility of this group of patients for whom investigations are more difficult to organize and perform than for typically developed children, a trial of proton pump inhibitors (PPIs) with careful clinical follow-up is acceptable (126). Esophagogastroduodenoscopy is the method of choice to diagnose esophageal involvement (127). Biopsies are important to identify or rule out other causes of esophagitis, and to diagnose and monitor Barrett esophagus. Esophageal pH-metry is a valid quantitative measure of esophageal acid exposure. When combined with esophageal multichannel intraluminal impedance pH-metry can detect acidic, weakly acidic, and nonacidic reflux episodes. Scintigraphy may have a role in the diagnosis of pulmonary aspiration. In patients with persistent gastric stasis and vomiting, upper GI barium swallow or abdominal ultrasound should be performed to exclude intestinal obstruction. Patients with severe NI are at risk for development of superior mesenteric artery syndrome because of frequent scoliosis and malnutrition resulting in lack of retroperitoneal fat around the third part of the duodenum, which is thought to avoid compression by increasing the aortomesenteric angle (128).
13: ESPGHAN WG recommends use of objective measures for the diagnosis of GORD in children with NI (esophageal pH- or pH/multichannel intraluminal impedance monitoring, and/or upper GI endoscopy). Given their high prevalence of GORD, a trial of PPIs with careful clinical follow-up is acceptable management in this clinically fragile group of children.
VOTES: 9, 8, 7, 9, 9, 8, 5, 8, 6, 5, 6, 9, 8, 7, 8 (accepted)
How to Treat Gastroesophageal Reflux Disease?
Treatment of GORD in children and adolescents consists of lifestyle changes, pharmacologic therapies, and surgical treatment (127).
Only a few small studies have evaluated the effects of nutritional intervention on GORD in children with NI. Miyazawa et al (129) studied the effect of food-thickener pectin on GORD symptoms in 18 children with NI. High-pectin diet significantly decreased the reflux index, number of reflux episodes per day, duration of longest reflux, and the number of reflux episodes. Vomiting episodes decreased with high-pectin formula and cough score decreased with both concentrations of pectin. In a study by Khoshoo et al (130), exclusively gastrostomy-fed NI children with gastroesophageal reflux were randomly assigned to receive either casein- or whey-based formula (130). A significant reduction in number of reflux episodes and duration of reflux was observed while consuming the whey-based formula. In addition, malnutrition itself seems to influence GORD in children with NI, as Campanozzi et al (131) noted a marked improvement of GORD in 4 out of 9 children with NI after a 6-month feeding with hypercaloric diet and increase of body weight and BMI.
Treatment with acid-suppression drugs is the main therapy in children with NI with GORD. It is well accepted that PPIs are superior to histamine-2 receptor antagonists for both healing of erosive esophagitis and relief of GORD symptoms (127). Despite the fact that PPIs are effective in reducing acid reflux and treatment of reflux esophagitis, they do not influence the volume of the reflux, the number of reflux episodes, and the proximal extension of the reflux (132). Therefore, some symptoms, such as vomiting, usually persist despite PPI therapy (133), although 1 small prospective study documented a reduction in vomiting in children with NI treated with PPI (134). Like in any other condition, special attention to side effects, especially when prolonged treatment is considered, is warranted (including pulmonary and digestive infections, and malabsorption of micronutrients).
Kawai et al (135) studied the effect of the gamma-aminobutyric acid type B receptor agonist baclofen (0.7 mg · kg−1 · day−1) on GORD in 8 children with NI. The frequency of emesis significantly decreased, and the total number of acid refluxes and number of acid refluxes longer than 5 minutes. The percentage of total time of esophageal pH <4 and esophageal acid clearance time were, however, not significantly different when compared with pH-monitoring results before treatment. No adverse effects were observed, except for a slight reduction in muscle tone in 1 subject. The efficacy and safety of other prokinetic drugs, such as metoclopramide, domperidone, bethanechol, and erythromycin for GORD treatment in children with NI have not been studied.
14a: ESPGHAN WG suggests modification of enteral nutrition (thickening of liquid enteral formulas, whey-based formulas) in addition to other therapeutic options of GORD in children with NI.
LoE very low
VOTES: 9, 8, 6, 7, 8, 8, 7, 7, 7, 6, 2, 8, 8, 7, 8 (accepted)
14b: ESPGHAN WG group recommends use of PPIs as the first-line treatment in children with NI with GORD.
VOTES: 9, 9, 9, 9, 9, 9, 9, 9, 7, 9, 8, 9, 9, 9, 7 (accepted)
14c: ESPGHAN WG recommends not to routinely use prokinetic agents in children with NI with GORD because of their weak efficacy and side effects. Their use may be considered, however, in uncontrolled GORD.
VOTES: 7, 8, 9, 7, 9, 8, 9, 7, 7, 5, 6, 9, 9, 8, 8 (accepted)
How to Monitor Gastroesophageal Reflux Disease?
As severely neurologically disabled children cannot adequately report symptoms such as pain and heartburn, and visible regurgitation and dysphagia are not necessarily caused by GORD, only objective diagnostic tests are reliable for monitoring whether GORD is successfully controlled by therapy or not. When long-term therapy for GORD is needed and stopping treatments such as PPI is considered potentially detrimental, multichannel intraluminal impedance (±combined with pH-metry), if available, may assist in monitoring GORD.
15: ESPGHAN WG recommends the periodical re-evaluation of long-term therapy of GORD in children with NI
VOTES: 7, 9, 9, 8, 8, 7, 9, 9, 7, 5, 7, 9, 9, 8, 8 (accepted)
How to Diagnose Constipation
In patients with NI, constipation may be diagnosed through a careful history, symptoms-based, abdominal-rectal digital examination, and colonic transit times. Constipation is significantly more common among children using medication known to slow intestinal motility, and in children who are tube fed (136). A digital rectal examination should be performed at least once when assessing constipation in children, because it is possible to evaluate perianal sensation, anal tone, size of the rectum, presence of an anal wink, and determine the amount and consistency of stool and its location within the rectum (137). In children without neurodevelopmental disorders, use of transabdominal ultrasound can be considered as noninvasive technique to assess the rectal filling state (138), but there are no studies concerning children with NI. If the diagnosis is uncertain an abdominal radiograph may be helpful. Colonic transit time assessment can be used as quantitative measure of constipation in NI. A transit time delay at the proximal segment of colon is the dominant finding that suggests alterations of the motility of the smooth muscle associated with the reduction of activity of the striated muscles of the anal sphincter and/or of the pelvic floor. Brain abnormalities may play a role in colonic transit time delay because there is evidence that delayed colonic transit is more frequent in children with severe brain lesions (139).
16: ESPGHAN WG recommends diagnosis of constipation in children with NI by a careful history, abdominal, perineal, and if necessary rectal digital examination.
VOTES: 9, 9, 8, 8, 9, 9, 9, 8, 9, 9, 7, 7, 9, 9, 9 (accepted)
What Is the Treatment of Constipation?
The treatment of constipation in children with NI should conform to the standard for non-disabled children. The initial approach involves a fecal disimpaction before maintenance therapy, using enemas for 3 consecutive days and osmotic agents such as polyethylene glycol (1.5 g · kg−1 · day−1) until the child performs a liquid and clear evacuation (140). More than 50% of children with NI have chronic use of laxatives but they are less responsive to treatment than typically developed children (141). Fiber and fluid intakes are inadequate in 53% of children with NI (142). Modest relief of constipation with reduction of laxatives usage have been demonstrated by increasing fiber intakes to 17 to 21 g/day but high fiber intake may cause intolerance (flatulence, distension, and bloating). Maintenance therapy requires use of osmotic laxatives such as lactulose (1–2 mL · kg−1 · day−1) or polyethylene glycol (0.8 g · kg−1 · day−1) (136). There have been reports of severe pneumonia due to aspiration of laxatives and therefore use of macrogol or liquid paraffin must be provided with caution in children with NI with high risk of aspiration (137). In refractory cases, hydrocolonic enema and anterograde continence enema (ACE) has been reported as an effective treatment option (143). The ACE procedure involves a surgically constructed conduit into the colon that allows the administration of anterograde irrigations. It is most often done as a laparoscopic cecostomy or placement of cecostomy by interventional radiology. Previous studies have shown that the ACE procedure is safe and effective in children with defecation abnormalities but limited information about long-term outcomes is available in children with NI (144).
17a: ESPGHAN WG recommends in children with NI with constipation to use standard treatments as in typically developing children, unless there is a risk of aspiration of polyethylene glycol or liquid paraffin.
VOTES: 9, 9, 9, 8, 8, 9, 9, 8, 9, 8, 7, 7, 9, 9, 9 (accepted)
17b: ESPGHAN WG suggests increasing fluid and fiber intake as an additional strategy to treat constipation in children with NI.
VOTES: 9, 8, 8, 7, 9, 7, 7, 8, 8, 8, 7, 7, 8, 9, 7 (accepted)
What Other Problems Can Contribute to Feeding Difficulties (ie, Dental, Drooling, Pain, Orthopedics, etc)?
Children with NI have a high incidence oral/dental problems contributing to feeding difficulties. These include the stability of the jaws, lip tone and movement, and problems with biting including tonic biting and overbiting. Jaw instability limits graded opening and closure, impairing manipulation of food in the mouth and leading to poor bolus formation and swallowing difficulty. Jaw thrusting and retraction may cause difficulties taking food from a spoon, drinking, retaining and manipulating food within the mouth, bolus formation, and safe and effective swallowing (67). Children with NI exhibit almost a 3-fold greater chance of having an occlusion abnormality (145). Bruxism, the habitual grinding of teeth, is a common occurrence in people with NI. In extreme cases, bruxism leads to tooth abrasion and flat biting surfaces. Ortega et al (146) found that along with bruxism there were habits such as pacifier sucking, finger sucking, habit of biting objects, and tongue interpositioning. Drooling of saliva, sialorrhea, appears to be the consequence of a dysfunction in the coordination of the swallowing mechanism, resulting in excess pooling of saliva in the anterior portion of the oral cavity and the unintentional loss of saliva from the mouth. Prevalence rates of sialorrhea in children with NI are reported range from 10% to 58% (147). The lips and tongue also play an important role in effective feeding. The lips may be hypotonic, hypertonic, or have a mixed tone with constant movement at rest. Poor lip control can cause leakage of food and fluids, resulting in decreased intake and contributing to poor nutrition and dehydration. Poor tongue movements including thrusting may compromise the formation of the food bolus.
Many children with NI have trunk hypotonia. In an upright sitting position, therefore, the thoracic column becomes kyphotic and the cervical spine lordotic. Because of the problem of drooling the head of the child is often tilted backwards. The children therefore become lordotic in the cervical spine, which has a negative influence on the function of the pharynx during swallowing. Neck extension may hamper closure of the laryngeal vestibule. Many NI children undergo surgery for scoliosis. Apart from the routine problems after surgery, they may develop gastric dysmotility (148). The cause of this complication is not clear, but could be related to the continuous traction applied to the spine, which may result in overstimulation of the sympathetic fibers. Sympathetic overstimulation may cause postprandial antral hypomotility and delayed gastric emptying leading to persistent nausea and recurrent emesis. Secondary malnutrition can further contribute to the GI motility disorder.
18: ESPGHAN WG recommends that careful attention is paid to dental problems, general posture, and orthopedic issues in patients with NI, because these may contribute to feeding difficulties.
VOTES: 9, 9, 9, 9, 8, 8, 9, 8, 9, 9, 8, 9, 9, 8, 8 (accepted)
DIETETIC MANAGEMENT AND MONITORING (OTHER THAN ENTERAL NUTRITION)
Which Type of Diet According to Oral/Gastric Tolerance?
Oral feeding should be preferred in all children including children with NI. Feeding must be safe and so if severe OPD (dysphagia, unsafe swallow) is associated with repeated pulmonary aspirations, pneumonias, dehydration, and/or life-threatening events then an early switch to (partial or full) enteral feeding is advocated (Fig. 1). The duration of a trial of oral feeding depends on the child's age and the severity of malnutrition. A follow-up period of 1 to 3 months is usually sufficient but infants and severely malnourished patients need to be seen more frequently. Older children should be seen at least annually (1,56). The optimal energy content of oral feeds may differ according to type of the impairment, mobility of the patient, medication, and other factors. In order to increase total energy content of meals without excessively increasing volume, additional fat or oils (eg, high fat spreads), dry milk powders, cream, or ice cream may be supplemented (56). Recommendations on fiber intake are the same as for typically developing children (age plus 5 g/day in children older than 2 years).
Composition of the diet should be discussed with specialized feeding therapist/dietitians (56,149). In cooperation with a feeding therapist/dietitian, it is reasonable to modify textures of food and thickness of fluids to ensure safe and efficient food intake.
19: ESPGHAN WG recommends using oral feeding in children with NI if it is nutritionally sufficient, safe, stress-free, and feeding time is not prolonged.
VOTES: 9, 8, 9, 9, 9, 9, 8, 8, 9, 9, 9, 8, 9, 9, 9 (accepted)
Does Feeding Times Compete With Rehabilitation?
In some children, attempts at oral feeding at any cost may lead to an excessive amount of time spent on feeding the child during the day, which in turn may lead to a lack of time left for other activities as rehabilitation, and severe impairment of the caregivers’ quality of life (QoL). This occurs especially in children with chewing and swallowing dysfunction and affects up to 90% of children with NI (1,53,78,150–156). Some patients are able to feed themselves, but lack hand-mouth coordination and may eat slowly and spill part of food. Many children with NI are not able to communicate hunger and satiety (157,158). Usually, total feeding time during the day of between 3 and 6 hours or >30 minutes per feed is considered as excessive (50,157,159,160). ESPGHAN defines a feeding time >4 to 6 h/day as one of the conditions for considering enteral nutrition support (161). It should, however, be taken into account that caregivers often overestimate the time spent feeding the child and also overestimate the child's caloric intake (62,78,157).
20: ESPGHAN WG recommends considering use of enteral feeding if total oral feeding time exceeds 3 hours per day.
VOTES: 9, 8, 9, 8, 9, 9, 9, 8, 7, 9, 9, 5, 7, 8, 8 (accepted)
ENTERAL NUTRITION (ENTERAL TUBE FEEDINGS, PERCUTANEOUS ENDOSCOPIC GASTROTOMY/JEJUNOSTOMY)
Which Sorts of Enteral Product to Use?
The choice of enteral formula depends not only on the child's age, but also on its energy requirements and mode of enteral access. Most enteral feeds are designed to meet all essential nutrient requirements (161). The initial feed of choice is usually a standard energy density (1.0 kcal/mL) polymeric feed. For children with an increased energy requirement or poor tolerance of large volumes of feed, a high-energy density formula (eg, 1.5 kcal/mL) (1,162), or dietary supplementation with glucose polymers and/or long-chain triglycerides to increase calorie intake may be useful. The addition of modular nutrients, however, should be made with the help of a dietitian to ensure that the final composition of the diet is adequate and to avoid preparation errors. For severely undernourished children, additional protein (2.0 g · kg−1 · day−1) and energy (additional 20% increase in energy intake) may be required to promote “catch up” growth (163,50). Before 12 months of age, an infant formula should be used (164). Most children will tolerate a polymeric formula, but some children may require a semielemental or elemental formula. Casein hydrolysates and amino acid–based formulas may be used in selected patients (164). In some countries an enteral feed specifically designed for tube-fed children with severe NI after nutritional rehabilitation is available: it is low-fat, low-calorie, high-fiber, and micronutrient replete (58,165). Whey-based formulas may be beneficial in children with poor feed tolerance because of delayed gastric emptying (164,166,167). Whey-based enteral formula has also been shown to significantly reduce acid gastroesophageal reflux episodes in children (but not infants) with severe NI and a 50% whey formula significantly reduces gagging and retching in children with severe NI (168). Pureed food given via gastrostomy has been suggested to reduce gagging and retching in children after fundoplication surgery due to higher viscosity and different hormonal responses favorably affecting GI motility (167). Concerns regarding the nutritional adequacy and safety of home-prepared tube feeds have been reported and even with the involvement of a dietitian, poor weight gain has been reported (167). Microbial contamination of enteral tube feeds can occur even with the use of commercial formulas (169,170). Risk factors, however, include the environment and the manner in which the feed is prepared, poor attention to hygiene during handling, repeated topping up of the feed container, and increasing feed-hanging times (161). Commercially available “ready to hand” closed enteral feeding systems are designed to limit handling procedures with the introduction of the giving set spike into the pack.
21a: ESPGHAN WG recommends using standard (1.0 kcal/mL) polymeric age-appropriate formula including fiber for children with NI older than 1 year.
VOTES: 9, 9, 9, 9, 9, 9, 9, 8, 8, 8, 8, 8, 8, 7, 7 (accepted)
21b: ESPGHAN WG recommends using a high-energy density formula (1.5 kcal/mL) containing fiber in cases of poor volume tolerance in children with NI, provided hydration is carefully monitored.
VOTES: 9, 9, 9, 8, 8, 8, 8, 8, 8, 8, 8, 8, 8, 7, 7 (accepted)
21c: ESPGHAN WG recommends using human milk, a standard infant formula, or nutrient dense infant enteral formula as clinically indicated in infants with NI.
VOTES: 9, 9, 9, 9, 9, 9, 9, 9, 9, 8, 8, 8, 7, 6, 6 (accepted)
21d: ESPGHAN WG recommends using a low-fat, low-calorie, high-fiber, and micronutrient-replete formula for the maintenance of enteral tube feeding after nutritional rehabilitation in immobile children with NI.
VOTES: 9, 8, 8, 8, 8, 8, 8, 8, 8, 8, 8, 7, 7, 6, 6 (accepted)
**21e: ESPGHAN WG recommends using a trial of whey-based formula in cases of gastroesophageal reflux, gagging, and retching in children with NI.
VOTES: 9, 8, 8, 8, 8, 7, 7, 7, 7, 7, 6, 6, 6, 6, 5 (accepted)
21f: ESPGHAN WG recommends caution if pureed food is used for enteral tube feeding in children with NI, because of concerns regarding nutritional adequacy and safety.
VOTES: 9, 9, 8, 8, 8, 8, 8, 8, 7, 7, 7, 6, 6, 5, 4 (accepted)
Which Modalities of EN to Use (Bolus/Continuous)?
Enteral tube feeding can be administered as a bolus, intermittently, or continuously. The choice of feeding regimen will be based on the child's enteral access, their activities, caloric needs, and tolerance to feeds (1). Continuous feeding is the preferred method in feeding intolerance. In continuous feeding the feed is delivered by dripping by gravity or assisted by an enteral feeding pump over a specified number of hours into a tube. In bolus feeding the nutritional product is administered during 15 to 30 minutes several times a day. Bolus feeding allows more freedom and may be more suitable to the lifestyles of many families. The timing of bolus feeds is important to provide adequate opportunity for the development of hunger before oral meals. A child with high-caloric needs or with poor tolerance to volume may benefit from a combination of overnight continuous feeds with boluses during the day (1,56,164).
22: ESPGHAN WG recommends using a combination of nocturnal continuous feeds with daytime bolus feeds in children with high-caloric needs or poor tolerance to volume.
VOTES: 9, 9, 9, 9, 9, 9, 9, 8, 8, 8, 8, 7, 7, 6, 5 (accepted)
Which Type of Tube (Nasogastric, PEG) to Use?
Intragastric access can be provided by either a nasogastric tube or a gastrostomy, created surgically (preferably laparoscopic), radiology assisted or more usually a percutaneous endoscopic gastrostomy or periendoscopic gastrostomy [PEG]) (171). Prospective randomized studies in children, comparing nasogastric with gastrostomy feeding in children are not available. In adults with swallowing difficulties, a Cochrane review showed that PEG was associated with a lower probability of intervention failure. PEG was found to cause less discomfort, to be more convenient, and to interfere less with social activities. There was no significant difference in mortality rates between groups, or in adverse events, including pneumonia related to aspiration. These results suggest that a gastrostomy may be more effective and safe compared with nasogastric tube (172). A prospective cohort study with a follow-up of 12 months of a cohort of 57 children with NI receiving a gastrostomy, showed a substantial increase in weight gain, improved health as reported by the parents and a significant reduction in feeding time with no increase in respiratory infections (57,165). Common complications reported in this and other studies, are minor site infections and granulation tissue, occurring in 40% to 60% of patients. Peritonitis, tube migration, tube blockage, major site infections, buried bumper, and colon perforation are far less common.
23: ESPGHAN WG recommends using a gastrostomy as the preferred way to provide intragastric access for long-term tube feeding in children with NI.
VOTES: 9, 9, 9, 9, 9, 9, 9, 9, 9, 9, 9, 8, 8, 9, 9 (accepted)
What Are the Indications of Jejunal Feeding?
In cases in which intragastric feeding is contraindicated because of severe gastric motility disorder, or severe GORD is not amenable to antireflux surgery, jejunal tube feeding can offer enteral access. A jejunal tube needs to be positioned distal to the Treitz ligament to prevent retrograde filling of a dysfunctioning stomach. Jejunal access can be provided by a nasojejunal tube, jejunal tube introduced through a gastrostomy, or surgical transcutaneous jejunostomy.
In patients who already have a gastrostomy, a jejunal tube can be introduced through the gastrostomy. These jejunal tubes, however, frequently migrate back to the stomach. The mean functional duration of these tubes was found to be 55 days in adults and 39 days in children. Retrograde dislodgment of the jejunal extension tube, tube obstruction, and mechanical failure have been described as the most common device-related complications (173).
Jejunal feeding is appropriate in patients with recurrent vomiting and/or tube feeding-related aspiration, severe gastroesophageal reflux, and gastroparesis (174). The combination of gastric decompression via PEG and simultaneous jejunal nutrition was shown to provide clinical benefit in patients with NI.
24: ESPGHAN WG suggests using jejunal feeding in cases of aspiration due to GORD, refractory vomiting, retching, and bloating in children with NI.
VOTES: 9, 9, 8, 8, 8, 8, 9, 9, 8, 7, 7, 7, 5, 9, 9 (accepted)
When Should Tube Feeding Be Started?
Tube feeding is indicated in cases of inadequate oral intake manifesting as insufficient weight gain or weight stagnation, evidence of low body fat stores, low weight in respect to height/length, prolonged or stressful oral feeding, recurrent pulmonary infections as sign of aspiration, or food refusal which do not respond to noninvasive nutritional support (1,56).
25: ESPGHAN WG recommends using enteral tube feeding in cases of unsafe or inefficient oral feeding, preferably before the development of undernutrition.
VOTES: 9, 9, 9, 9, 9, 9, 9, 9, 8, 8, 7, 7, 5, 9, 9 (accepted)
SURGICAL INTERVENTIONS (NISSEN FUNDOPLICATION)
What Investigations Should Be Carried out Before Consideration for Surgery?
Children with NI account for the great majority of patients with GORD requiring antireflux surgery in the pediatric surgical field, but there have been very few studies that have evaluated the GORD of NI patients before surgery in relation to the outcome (175). Careful evaluation of GORD is required before fundoplication because symptoms of GORD are often lacking (communication deficits) or nonspecific (increased spasticity, seizures, pulmonary or laryngologic manifestations) or associated with other complications (inhalation, swallowing difficulties) in this high-risk population. Investigations are required before surgery to confirm GORD, to search for complications (esophageal stenosis, Barrett), and to rule out differential diagnosis (ie, eosinophilic esophagitis). The 24-hour pH monitoring has been widely used to evaluate and quantify GORD, but is not able to be detected nonacid reflux. pH/impedancemetry has been established as a pH-independent measurement tool that allows for the analysis of the movement, direction, and height attained by the bolus, making it possible to distinguish antegrade and retrograde bolus movement. The technique still has limitations: high cost, limited added value regarding therapeutic implications, and lack of evidence-based parameters for the assessment of GORD and symptom association in children. Assessing GORD could be difficult in cases of continuous enteral nutrition and/or PPI treatment. Upper GI endoscopy with biopsies is required before surgery to search for esophagitis and Barrett. Patients with NI are considered as a high-risk group for peptic esophagitis, Barrett esophagus, and esophageal adenocarcinoma. The utility of the upper GI study to rule out anatomic abnormalities in the preoperative evaluation is questionable (176). There are no data on predictive value of high-resolution esophageal manometry on postfundoplication complications in patients with NI. Abnormal gastric emptying, is frequent in children with NI and may be assessed by using octanoic acid breath test or scintigraphy, but its usefulness for deciding surgery or predict outcome after fundoplication has never been assessed. There is today no investigation that could predict failure, complication (ie, dysphagia) of fundoplication, or recurrence of GORD.
26: ESPGHAN WG recommends that upper GI endoscopy with biopsies is performed before fundoplication in children with NI. Other investigations (eg, contrast studies, gastric emptying studies, and pH± impedancemetry) may also be indicated.
VOTES: 9, 8, 9, 9, 9, 9, 8, 9, 7, 5, 4, 9, 9, 9, 8 (accepted)
SHOULD A FUNDOPLICATION ROUTINELY BE PERFORMED WHEN A PEG INDICATED?
Among the children requiring PEG those with NI are more likely to require a subsequent antireflux procedure (177). One potential benefit of associating gastrostomy to fundoplication is to prevent inhalation and the respiratory complications of enteral feeding. Infants with NI who, however, underwent fundoplication at the time of gastrostomy placement did not have a reduced rate of reflux-related hospitalizations (including asthma, inhalation, GORD, pneumopathies) when compared with those who underwent gastrostomy placement alone (178). Antireflux surgery also has pitfalls and complications. There are no randomized controlled trials of fundoplication versus postoperative medication for children with NI and severe GORD undergoing gastrostomy (179) (Fig. 1).
Most of the publications on the relationship between PEG and GORD using pH/impedancemetry before and after PEG conclude that GORD is not aggravated by PEG (180–183), although some studies showed that PEG increased GORD (184–186). Another approach is to assess the outcome of GORD after PEG in children with NI. In the experience of one of us only 16% of patients with a neurological disease, needed antireflux surgery at follow-up (unpublished data). In another study only 9% of patients requiring PEG underwent fundoplication 20 months after PEG (187). Even if we cannot rule out the responsibility of PEG worsening GORD, we hypothesize that the increased volume of food intakes after PEG placement could reveal or aggravate a preexisting GORD. Routine fundoplication at the time of gastrostomy would unnecessarily expose a large proportion of children with NI to antireflux surgery complications including gas bloat syndrome, dysphagia, and dumping syndrome.
27: ESPGHAN WG recommends that a routine antireflux procedure should not be performed at the time of PEG placement in children with NI because it could add significant morbidity.
VOTES: 9, 9, 9, 9, 9, 9, 9, 8, 9, 9, 7, 9, 9, 9, 8 (accepted)
WHAT ARE THE INDICATIONS FOR FUNDOPLICATION?
In a retrospective cohort study on caregiver perceptions and complication rates in 122 patients with NI who underwent fundoplication, the majority of caregivers indicated that surgery improved weight gain, chest infections, vomiting, and feeding tolerance. Although gagging and retching were common after surgery, a high percentage of caregivers reported improved nutrition, reflux-related symptoms, and high levels of satisfaction (188). Children with NI represent a special group of patients with increased risk for operative morbidity and postoperative failure and persistence/recurrence of GORD (127). As for normally developed children, antireflux surgery may be of benefit in children with confirmed GORD who have failed optimal medical therapy, who are dependent on medical therapy over a long period of time, who are significantly nonadherent with medical therapy, or who have life-threatening complications of GORD. Children with respiratory complications including asthma or recurrent aspiration related to GORD are generally considered most likely to benefit from antireflux surgery when medical therapy fails. Given the morbidity and high failure rates of antireflux surgery in children with NI, patients whose symptoms are well controlled on medical therapy may not derive additional benefit from antireflux surgery. In a systematic review, it was found that the need for reoperation in children with NI was 15.4% in comparison with 7.0% in those without NI (189). Ferluga et al (190) concluded that there is poor or no evidence of effectiveness of fundoplication in treatment of nutritional problems. In patients with NI, the potential benefit of fundoplication should be weighed against the risk of potential complications before surgery is decided upon (191) (Fig. 1).
28: ESPGHAN WG recommends that fundoplication be considered in cases of failure of optimized medical therapy for GORD in children with NI.
VOTES: 9, 9, 8, 9, 8, 8, 9, 6, 9, 8, 9, 8, 8, 8, 9 (accepted)
Are There Surgical Alternatives to Fundoplication?
Total esophagogastric disconnection (EGD) and Roux-en Y esophagojejunostomy has been developed as a “once-and-for-all” effective therapy for GORD in patients with NI. This strategy is, however, more invasive, requiring longer periods of rehabilitation (192). The advantage of laparoscopic Nissen fundoplication, in terms of both reduction of hospital stay and postoperative peritoneal adhesions, reduces the indications for total EGD. This should be considered as primary surgical management of GORD only in special and complex clinical situations; in severe NI children needing repeated anti-GORD surgery, EGD could represent the only opportunity of definitive resolution. Microgastria, in selected cases that cannot be treated with one of the gastric augmentation techniques, could also represent an indication for EGD (193).
29: ESPGHAN WG recommends restricting the indication for total esophagogastric disconnection and Roux-en-Y esophagojejunostomy, as an alternative of classical antireflux surgery, to selected cases in children with NI.
VOTES: 9, 9, 8, 9, 8, 8, 9, 6, 9, 8, 9, 8, 8, 8, 9 (accepted)
ETHICAL ISSUES RELATED TO DIGESTIVE AND NUTRITIONAL PROBLEMS IN THE SEVERELY HANDICAPPED
What Is the Effect of Nutritional Support on Quality of Life of Children and Caregivers?
The severity of the disease and the presence and severity of malnutrition both have an impact on QoL impairment. Gastrostomy feeding is effective in reversing malnutrition in children with NI and has positive effects on the QoL of the patients and the caregivers. QoL is often the most important outcome treatment for chronic conditions such as NI (194). Children with NI have reduced health-related quality of life and the degree to which it is reduced is related to the severity of their NI (195,196). Almost 50% of children with NI are able to self-report their perceptions of their health-related QoL. Healthcare professionals and parents should, therefore, rely on a proxy report only when the children are not capable of self-report, or to ascertain potential differences in perceptions between children and their parents (197). Nevertheless, for severely disabled children parent-proxy reported QoL are the only available data. Caring for a child with NI affects a parent's physical well-being, social well-being, freedom, independence, family well-being, and financial stability (198). Carers of children with NI have poor QoL, worse mental health, and higher burnout levels than controls (199). Parents often feel unsupported by the services they access (200). Children with the most severe motor disability who have feeding tubes are an especially frail group, that is, having the poorest health, the worst well-being, and using the most health-related resources (201). Previous qualitative studies have found issues of social isolation, difficulty in obtaining care, and high caregiving demands among parents of children with NI who are fed through a gastrostomy tube (149,202,203). Using a validated instrument for measurement of QoL, however, Sullivan et al (204) found a significant improvement in the QoL of carers 6 and 12 months after insertion of a gastrostomy feeding tube in children with CP. A clear need for additional support for parents of children with a PEG has been identified that goes beyond simply meeting clinical need (149). Ongoing medical and psychosocial support is needed after initiation of nonoral feedings and is best provided through the collaborative efforts of the family and a team of professionals (205).
30: ESPGHAN WG recommends that parents and/or caregivers are always involved in decision making especially around gastrostomy feeding.
VOTES: 8, 9, 9, 9, 9, 9, 9, 8, 9, 9, 9, 9, 9, 9, 9 (accepted)
Are There Ethical Issues in Relation to Nutritional Support?
PEG feeding for reversing malnutrition in children with NI is a therapeutic intervention and as such is governed by standard ethical rules. The decision on initiation of the treatment is based on the likely net balance between advantages and disadvantages to promote the best interest of the individual patient. Similarly, to other treatments, informed and educated consent of the parents is an important ethical principle. PEG feeding is associated with several complications and is costly. Gastrostomy feeding has been shown to reverse malnutrition (165) and to reduce the number of feed-related choking episodes, vomiting, and chest infections (57). The decision-making process for parents is, however, often difficult due to negative caregiver perceptions (75) and the gastrostomy tube placement is often delayed (206). Fears about loss of normal eating, dependency on gastrostomy feeds, and complications of the procedure can make parents accept this option only as a last resort (200). Nonetheless, the majority of caregivers recognize improvement in the children after placement and the majority admit that they would have accepted an earlier placement of the gastrostomy tube if they had anticipated the overall outcome (207,208). Obtaining parents’ consent before initiating PEG feeding is important ethical principle, similarly to any other medical intervention. The parents need to be given detailed information on the benefits, risks, and alternatives of the treatment and also, enough time to retain the information to make a conscious decision. Health care workers need to develop effective, family-centered, patient-appropriate adherence strategies for gastrostomy fed children with NI. Furthermore, education and training on gastrostomy feeding both in hospital and in the community help the carers of patients to cope during the transition from oral to gastrostomy feeding, while continuing social support is essential to improve QoL of carers.
31: ESPGHAN WG recommends involvement of a professional ethicist to assist decision making in cases in which invasive investigations or procedures (eg, gastrostomy, fundoplication, parenteral nutrition) pose ethical dilemmas.
VOTES: 9, 9, 9, 9, 9, 9, 9, 9, 8, 8, 9, 9, 8, 9, 9 (accepted)
The authors would like to acknowledge the contribution of Madeleine Gottrand, junior pediatrician and Valerio Balassone, surgery fellow, for assistance in preparing the consensus and editing the text.
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cerebral palsy; gastrointestinal diseases; nutrition
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