Article

Gastrostomy tube feeding of children with cerebral palsy: Variation across six European countries

Authors:
  • Federação das Associações Portuguesas de Paralisia Cerebral
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Abstract

Aim: To compare the prevalence of gastrostomy tube feeding (GTF) of children with cerebral palsy (CP) in six European countries. Method: Data on 1295 children (754 males, 541 females; mean age 5y 11mo, range 11y 2mo, min 6mo, max 11y 8mo) with CP born from 1999 to 2001 were collected from geographically defined areas in six European countries; four of the areas covered the whole country. Distribution of CP was unilateral 37%, bilateral 51%, dyskinetic 8%, and ataxic 4%. Sixty children were classified in Gross Motor Function Classification System (GMFCS) levels I and II, 6 in level III and 34 in levels IV and Vas Outcome measures were GTF, age at placement, feeding difficulties and the children's height and weight for age standard deviation scores (z-scores). Results: The use of GTF among all children with CP was highest in western Sweden (22%, 95% confidence interval [CI] 16-29), and lowest in Portugal (6%, 95% CI 3-10), northern England (6%, 95% CI 3-9) and in Iceland (3%, 95% CI 0-13; p<0.001). The difference between areas was greater among children in GMFCS levels IV and V (non-ambulant); in this group, lower height z-scores were more prevalent in the areas with lower prevalence of GTF. The children's age at placement of gastrostomy also varied between areas (p<0.002). Interpretation: The observed differences in the use of GTF may reflect differences in access to treatment or clinical practice, or both. Our results suggest that the use of GTF may improve growth in height and weight among children with more severely affected gross motor function - the group most likely to have associated feeding difficulties.

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... STROBE scores can vary between 0 and 4. A score of 4 indicates that all items for all four domains (study design and setting, study participants, outcomes, and eligibility criteria) were adequately met. STROBE scores for the 42 included studies ranged from 2 to 4, with an average STROBE score of 3.2: score of 2 (n=1 study), 29 score of 2.5 (n=8 studies), 30-37 score of 3 (n=11 studies), 38-48 score of 3.5 (n=18 studies), [49][50][51][52][53][54][55][56][57][58][59][60][61][62][63][64][65][66] and score of 4 (n=4 studies). [67][68][69][70] The most common methodological issues included absent or incomplete definitions of outcome variables, no reporting of GMFCS levels or other information on CP severity, or minor inconsistencies in data analyses. ...
... 45 (n=5 studies); 45,58,60,66,68 n≥500 (n=5 studies). 54,55,57,59,70 Age ranged from birth to 79 years (mean 10y 1mo [SD 11y]); however, only six of the 42 studies included adults (>18y), of which two studies included adults only. 31,59 Data were retrieved from studies conducted across 20 countries, mainly from disability registers, special needs schools, adult group homes, and clinical centres. ...
... Nine studies included data from medical registers and were excluded from meta-analyses. 34,45,54,55,[57][58][59][60]70 To further reduce heterogeneity in the data when conducting meta-analyses, the two studies that included adult participants only were also excluded. 31,59 Four studies used a longitudinal design; 29,34,50,65 thus, only the most recent prevalence estimates were considered. ...
Article
Full-text available
Aim: To determine the prevalence of drooling, swallowing, and feeding problems in persons with cerebral palsy (CP) across the lifespan. Method: A systematic review was conducted using five different databases (AMED, CINAHL, Embase, MEDLINE, and PubMed). The selection process was completed by two independent researchers and the methodological quality of included studies was assessed using the STROBE and AXIS guidelines. Meta-analyses were conducted to determine pooled prevalence estimates of drooling, swallowing, and feeding problems with stratified group analyses by type of assessment and Gross Motor Function Classification System level. Results: A total of 42 studies were included. Substantial variations in selected outcome measures and variables were observed, and data on adults were limited. Pooled prevalence estimates determined by meta-analyses were as high as 44.0% (95% confidence interval [CI] 35.6-52.7) for drooling, 50.4% (95% CI 36.0-64.8) for swallowing problems, and 53.5% (95% CI 40.7-65.9) for feeding problems. Group analyses for type of assessments were non-significant; however, more severely impaired functioning in CP was associated with concomitant problems of increased drooling, swallowing, and feeding. Interpretation: Drooling, swallowing, and feeding problems are very common in people with CP. Consequently, they experience increased risks of malnutrition and dehydration, aspiration pneumonia, and poor quality of life. What this paper adds: Drooling, swallowing, and feeding problems are very common in persons with cerebral palsy (CP). The prevalence of drooling, swallowing, and feeding problems is 44.0%, 50.4%, and 53.5% respectively. There are limited data on the prevalence of drooling, swallowing, and feeding problems in adults. Higher Gross Motor Function Classification System levels are associated with higher prevalence of drooling, swallowing, and feeding problems. There is increased risk for malnutrition, dehydration, aspiration pneumonia, and poor quality of life in CP.
... CP is a chronic condition -the prototype of disability in childhood -that leads to long-term functional limitations (Patel, Piazza, Layer, Coleman, & Swartzwelder, 2005). Despite the improvement in perinatal care in developed countries, the incidence of CP has remained constant, with a rate of around 2.08/1000 live births in Europe Chagas et al., 2008;Magnus et al., 2012). In Portugal, there are approximately 200 new cases per year, and 90% will reach adulthood (Campos, 2013). ...
... The early identification of the risk factors for malnutrition is important to prevent complications associated with these children's behavior, health and growth as soon as possible (Sullivan, 2009). Several authors have reported that there is an association between nutritional status and inadequate diet and poor food intake, underlining the importance of conducting research on these children's nutritional status (Magnus et al., 2012). According to Sullivan (2009), dysphagia contributes to malnutrition in children with CP. ...
... The consistency of the food should be adapted to the child's constraints and needs in order to reduce the risk of food aspiration. These children should be followed--up by health professionals, in order to minimize parents' frequent difficulties in feeding their children (Magnus et al., 2012). A proper position, along with the use of technical aids, is essential to a successful feeding. ...
Article
Full-text available
Background: The nutritional status of children with cerebral palsy (CP) is an issue where nurses have a major responsibility towards children and their parents. Objectives: To assess the weight, height and body mass index of children with CP; To identify the caregivers' perception of the nutritional status of their child with CP; To identify the caregivers' difficulties in feeding their child; To identify the association between family functionality and the child's weight. Methodology: Mixed study with a sample of 104 children and their father/mother (104). The Anthropometric Assessment Questionnaire was applied to parents. Results: About 45% of children were below the 5th percentile. Most caregivers were aware of their child's weight-for-height deficit. These caregivers' difficulties were related to food spilling out of the mouth, choking, and frequent vomiting. Conclusion: A high percentage of children with CP have weight-for-height deficit. Caregivers are aware of this issue, indicating difficulties in feeding their children. The families of children with weight-for-height deficit are the most dysfunctional families.
... O que é a suplementação nutricional? É um procedimento no qual é aplicada uma sonda na zona abdominal que permite a administração direta, no estômago (33) , de alimentos, líquidos e medicação, através de uma seringa. Este procedimento é realizado em indivíduos com graves problemas de mastigação e deglutição (33) e que apresentam um elevado risco de engasgamento e aspiração de alimentos, podendo conduzir a infeções respiratórias graves. ...
... É um procedimento no qual é aplicada uma sonda na zona abdominal que permite a administração direta, no estômago (33) , de alimentos, líquidos e medicação, através de uma seringa. Este procedimento é realizado em indivíduos com graves problemas de mastigação e deglutição (33) e que apresentam um elevado risco de engasgamento e aspiração de alimentos, podendo conduzir a infeções respiratórias graves. ...
... [13][14][15] The use of nonoral EN has increased in the pediatric population in western Europe during the past 20 years, 4,16,17 yet the healthcare related to feeding and eating practices and follow-up provided are still nonstandardized and highly variable. 14,18,19 More important, as little is known about the long-term feeding and eating outcomes correlated with underlying disorders, this limits our capacity to provide professional healthcare adapted to whether feeding and eating functions have been lost or not yet developed. ...
... These findings can also be interpreted as the development of sensory functions and oral skills was facilitated for children continuing receiving food orally during GT. 26 The long-term need for GT in children with DD further highlights the necessity of this nutrition support for children who otherwise could be at risk of forced feeding, severe malnutrition, or growth impairment, an assumption corresponding to earlier findings on positive outcomes of GT. 3,5,19 With regard to the primary medical diagnosis of children with GT, the most frequent category was from ICD-10 chapter Q, congenital malformations, deformations, and chromosomal abnormalities. This was somewhat surprising as earlier studies have described neurological disease as being the most common indication for GT. ...
Article
Background Studies on long‐term feeding and eating outcomes in children requiring gastrostomy tube feeding (GT) are scarce. The aim of this study was to describe children with developmental or acquired disorders receiving GT and to compare longitudinal eating and feeding outcomes. A secondary aim was to explore healthcare provision related to eating and feeding. Methods This retrospective cohort study reviewed medical records of children in 1 administrative region of Sweden with GT placement between 2005 and 2012. Patient demographics, primary diagnoses, age at GT placement, and professional healthcare contacts prior to and after GT placement were recorded and compared. Feeding and eating outcomes were assessed 4 years after GT placement. Results The medical records of 51 children, 28 boys and 23 girls, were analyzed and grouped according to “acquired” (n = 13) or “developmental” (n = 38) primary diagnoses. At 4 years after GT placement, 67% were still using GT. Only 6 of 37 (16%) children with developmental disorders transferred to eating all orally, as opposed to 10 of 11 (91%) children with acquired disorders. Children with developmental disorders were younger at the time of GT placement and displayed a longer duration of GT activity when compared with children with acquired disorders. Conclusions This study demonstrates a clear difference between children with developmental or acquired disorders in duration of GT activity and age at GT placement. The study further shows that healthcare provided to children with GT is in some cases multidisciplinary, but primarily focuses on feeding rather than eating.
... It has now 31 members in 23 EU/EFTA countries. SCPE promotes quality and harmonization of cerebral palsy (CP) definition/description [4][5] [6] [7], develops collaborative epidemiological and clinical research about CP, disseminates knowledge for patients, health care professionals and key stakeholders, develops best practice in monitoring trends in CP [8] [9] and raises standards of equitable care for people with CP [10]. All this improves outcomes for individuals with CP. ...
... The JRC may sublicense any of the granted rights regarding the website or any portions thereof to any third party provided that the exercise of said rights are maintained within the purposes established by the Parties to this Agreement'. 10. http://www.scpenetwork.eu. ...
... 3,[10][11][12]14 Corresponding to 20-72% of cases, patients with neurological abnormalities predominate in all available registries of home enteral nutrition (HEN), as well as in large multicentre studies. [15][16][17] We observed a similar structure related to the indications for gastrostomy formation in the present study, which was based on the retrospective data from questionnaire surveys based on the children with gastrostomies treated between 2000 and 2010 in the participating hospital-based centres. After a reimbursement for HEN was introduced in Poland by the National Health Fund (in 2008 for pediatric patients), the number of children fed via gastrostomy increased significantly, with the prevalence of HEN amounting to 13.75 per 1 million inhabitants. ...
... Data from European HEN registries, as well as the results of a recently published multicentre study of children with cerebral palsy from six European countries, do not contain any details on the prevalence of GER and AR procedures in patients with gastrostomy. [15][16][17] Likewise, this issue was not addressed in the previously mentioned study dealing with HEN in Italian children. 16 Various possible drawbacks exist to the interpretation of our findings. ...
Article
Full-text available
Background/Objectives: To analyse the approach to diagnose gastroesophageal reflux (GER) and the qualification criteria for anti-reflux (AR) procedures in Polish children fed via gastrostomy between 2000 and 2010. Subjects/Methods: An electronic questionnaire containing questions on the demographic and clinical data of patients with gastrostomies was distributed to six Polish centres of nutritional therapy. The portion pertaining to GER included data on clinical exponents, diagnostic procedures (pH-metry, pH-impedance, scintigraphy and upper gastrointestinal (GI) series) and AR. Results: In total, 348 children (M199/F149; age at gastrostomy 5.78±5.49 years) were included. Data on the diagnosis of GER and the AR criteria were available for 343 and 336 subjects, respectively. Percutaneous endoscopic gastrostomy was performed in 258/348 patients (74.1%), while surgery was performed in 80/348 patients (23%). The data from 10/348 (2.9%) cases were unavailable. At least one of the tests for GER was conducted in 177/343 (51.6%) of patients: pH-metry in 74/343 (21.6%), pH-impedance in 17/343 (5.0%), scintigraphy in 60/343 (17.5%) and upper GI series in 102/343 (29.7%). GER was reported in 114/343 cases (33.2%), and fundoplication was performed in 87 children (76.3% of patients with GER). The highest congruence between a positive test result and the decision to perform fundoplication was documented in cases of scintigraphy and upper GI series (P=0.00000 and P=0.00191, respectively). A significant increase in the prevalence of simultaneous gastrostomy and AR was observed over the decade analysed (r=0.8, P=0.009). This study revealed a centre-specific attitude towards the diagnosis of GER and the assessment of qualifications for fundoplication in Polish gastrostomy-fed children. Conclusions: The unified diagnostic algorithm of GER and the universal qualification criteria for AR procedures need to be defined for gastrostomy-fed children.
... Twenty-one dual aim articles shared this aim (Planning) with the Resource for CP Research aim (Table S8) and emphasized a variety of health [186][187][188][189][190][191] and hip issues [192][193][194][195], planning for environmental and social needs [196][197][198][199] equipment [200][201][202] financial planning [203,204] predicting outcome [205] and mother's health [206]. Additional two-aim articles have been previously discussed under Prevention (n=2) and Surveillance (n=1). ...
Article
Full-text available
The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems. Method A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification. Results Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors. Interpretation CP registries and surveillance programs, including novel non-traditional ones, have significantly contributed to the understanding of how CP affects individuals, families and society. Moving forward, the global CP registry/surveillance program community should continue to strive for uniformity in CP definitions, variables collected and consistency with international initiatives like the ICF so that databases can be consolidated for research use. Adaptation to new technologies can improve access, reduce cost and facilitate information transfer between registrants, researchers and registries/surveillance programs. Finally, increased efforts in documenting variables of individuals with CP into adulthood should be made in order to expand our understanding of CP across the lifespan.
... Affected children can experience frequent illness due to their increased risk of epilepsy, gastrointestinal and nutritional problems and respiratory disorders compared with the general childhood population, with those children who are the most severely motor-impaired at the greatest risk (Pruitt & Tsai 2009;Shevell et al. 2009). Furthermore, children with CP are at risk of developing progressive musculoskeletal pathologies (Graham & Selber 2003), and many are technologydependent, including around one in ten reliant on a gastrostomy feeding tube (Dahlseng et al. 2012). ...
Article
Background Many previous studies that have investigated hospital admissions in children and young people with cerebral palsy lack information on cerebral palsy severity and complexity. Consequently, little is known about factors associated with the frequency and type of hospital admissions in this population. This study used hospital admission data available for all children and young people known to a population-based cerebral palsy register to describe the patterns of use of tertiary paediatric hospital services over a 5-year period.Methods This was a retrospective cohort analysis of routinely collected admission data from the two tertiary paediatric hospitals in the Australian state of Victoria. Data on admissions of individuals born between 1993 and 2008 registered on the Victorian Cerebral Palsy Register were analysed (n = 2183).ResultsBetween 2008 and 2012, 53% of the cohort (n = 1160) had at least one same-day admission, and 46% (n = 996) had one or more multi-day admissions. Those with a moderate to severe motor impairment and those with a co-diagnosis of epilepsy had more admissions, and for multi-day admissions, longer lengths of stay, P < 0.05. Across all severity levels, respiratory and musculoskeletal diseases were the most frequently reported reasons for medical and surgical admissions, respectively. All-cause readmission rates for urgent multi-day stays within 7, 30 and 365 days of an index admission were 10%, 23% and 63%, respectively.Conclusions The reasons for hospital admissions reported here reflect the range of comorbidities experienced by children and young people with cerebral palsy. This study highlights priority areas for prevention, early diagnosis and medical management in this group. Improved primary and secondary prevention measures may decrease non-elective hospital admissions and readmissions in this group and reduce paediatric inpatient resource use and healthcare expenditure attributable to cerebral palsy.
... In recent years, artificial nutrition has become a common intervention in Sweden to avoid malnutrition. The use of gastrostomy tube feeding among children with cerebral palsy was found to be the highest in Europe (18). The highest proportion of children who were dependent on artificial nutrition was found in Group 4. Their eating difficulties appeared to be related to gastrointestinal problems, such as frequent vomiting, and to food refusal rather than to oro-facial dysfunction. ...
Article
The aim was to study the background to and the manifestations of affected intelligibility of speech and reported difficulty with eating and saliva control in rare diseases. In Sweden, a disease or disorder is defined as rare when it affects no more than 100 individuals per million population and leads to a marked degree of disability. In 1996-2008, 1703 individuals with 169 rare diseases (3-67 years) answered a questionnaire about oral health and oro-facial function and 1614 participated in a clinical examination. A control group of 135 healthy children was included. Oromotor impairment was a frequent finding (43%) and was absent among the controls. Half the children in the youngest age group (3-6 years) had moderate/severely affected intelligibility or no speech compared with one-third in the other age groups. The most frequent eating difficulties were related to chewing and were found in approximately 20% of the individuals in the study group. Artificial nutrition was most common in children aged 3-6 years (9·2%), followed by children aged 7-12 years (4·9%), adolescents aged 13-19 years (3·3%) and adults (1·4%). Impaired saliva control was common (31·2%) and strongly and significantly correlated with oromotor dysfunction, intellectual disability, open mouth at rest and epilepsy. In conclusion, oromotor impairment and oro-facial dysfunctions, such as affected intelligibility, eating difficulties and impaired saliva control, are frequent in individuals with rare diseases. There is a strong correlation between oromotor impairment and affected intelligibility, eating difficulties and impaired saliva control in individuals with rare diseases. © 2015 John Wiley & Sons Ltd.
... Because GT placement is an invasive intervention, performed under general anesthesia in children, caregivers should be informed about possible complications. 13,14 The decision about gastrostomy was very difficult for parents of patients in this study, as was observed by other authors, although only 4.5% of carers reported that life with the child with gastrostomy proved to be tiring and time consuming. [15][16][17] Accordingly, ongoing support for families, extending beyond skin care and nutritional guidance, is of paramount importance. ...
Article
Full-text available
Gastrostomy is recommended to parents and children as the most appropriate method of long-term nutritional support. The objective of this study was to describe daily functioning of both caregivers and their children with gastrostomy tube. Using a semistructured questionnaire, this descriptive study examined perceptions of feeding and adherence to feeding recommendations for caregivers of children with neurological disabilities and gastrostomy tube. The questionnaire covered various aspects of child’s gastrostomy care, ranging from changing buttons, method of feeding, tolerance of diet, and problems with the gastrostomy site and device to how gastrostomy feeding has affected their lives. Parents and carers of 44 children completed a questionnaire. Children in the study (n = 44) had had a gastric tube in place for at least 1 month, and children with cerebral palsy had been assessed at level V of the Gross Motor Function Classification System. Most caregivers reported improvement in the children following placement and significant improvements in their own social functioning. Carers reported a significant reduction in feeding times, increased ease of drug administration, and reduced concern about their child’s nutritional status. Most caregivers reported a beneficial effect on their children of the gastrostomy feeding tube placement—improved nutrition and decreased health complications. Consistent with prior research, this study found that the majority of caregivers were satisfied with the gastrostomy tube placement results and felt the improvement in the quality of their life.
... 21 To our knowledge, differences in CP growth by ethnicity have not been studied directly, but a recent study by the Surveillance of Cerebral Palsy in Europe did find that anthropometric measures differed across countries in a pattern that seemed to relate to differing rates of enteral feeding. 22 Beyond general demographic considerations, it should be recognized that the British children were predominantly born and managed in the years 2000 to 2010, around 10 years after most of the Californian children were measured. Studies from both the US and the UK 23,24 have documented significant trends towards increased weight and BMI of children as measured in general paediatric practices from the early 1990s. ...
Article
Aim: Growth charts for cerebral palsy (CP) have been constructed using data for 24 920 Californian patients, covering ages 2 to 20 years, with separate charts for the five severity levels of the Gross Motor Function Classification System (GMFCS). Our aim was to test how the data for British children with CP fit these charts, compared with conventional local charts. Method: US CP growth reference was reanalysed using the lambda-mu-sigma (LMS) method to allow calculation of standard deviation z-scores. Growth data for 195 children with CP in Glasgow, UK, were retrieved and converted to z-scores using the CP reference as well as the combined World Health Organization and UK 1990 growth reference (UK-WHO). Results: Compared to the UK-WHO reference, measurements diverged progressively with increasing severity, with mean height for GMFCS level V being close to the second UK-WHO centile. Compared with the CP reference, mean height and weight z-scores were between the 50th and 75th centiles for all severity levels, while body mass index was just below the 50th centile. Interpretation: British children with severe CP seem relatively very small when their growth data are plotted on non-CP charts, but their data for weight and body mass index fit well to US CP charts and reasonably well for height. The LMS look-up tables will make it possible to calculate z-scores and produce charts in local formats.
... Research across six European countries, for example, has demonstrated considerable variation in the use of GFT and the age at which they are placed, which could be attributed, in part, to variations in clinical practice. 15 Delaying surgery may add to the stress already experienced by caregivers. Ongoing assessment of parental psychosocial support needs and their ability to cope with oral/nasogastric tube feeding, with a view to moving toward feeding by a GFT, should form an essential aspect of clinical care. ...
Article
Full-text available
The psychosocial support needs of parents considering a gastrostomy feeding tube for their disabled child are often overlooked, yet there is a growing body of evidence that attests to the decisional conflicts parents, often mothers, experience. This may be in addition to the stress associated with feeding a disabled child. The support needs of families and caregivers should be assessed, including the values parents attach to oral and tube feeding. Structured support should be embedded within the care pathway and both professionals, and service users, with appropriate training should be identified to ensure parental information needs, and any emotional, practical and financial issues are addressed.
... Anket formu, araştırmacı tarafından incelenen literatür doğrultusunda oluşturulmuş ve H.Ü. İhsan Doğramacı Çocuk Hastanesi Gastroenteroloji Polikliniğinde çalışan hekimlerin tümünden uzman görüşü alınarak yeniden düzenlenip son hâli oluşturulmuştur. [1][2][3][4][5][6][7][8][9][10][11] Anket soruları, ebeveynlerin bakımla ilgili davranışlarını değerlendirmeye yönelik soruları içermektedir. Bu form, gastrostomi ile beslenen çocukların ve ebeveynlerinin tanıtıcı özelliklerine, çocuğun hastalığa ilişkin bilgilerine, ebeveynlerin beslenme, ilaç uygulama davranışları ve pansuman uygulama davranışlarına yönelik bilgilere ulaşılmasını sağlayan toplam 32 sorudan oluşmaktadır. ...
... 4-6 Substantial heterogeneity in outcome terminology, definition, and measurement among empirical studies contributes to this uncertainty about G-tube feeding efficacy. [5][6][7][8][9][10][11] The lack of standardized outcomes and the associated inadequate information on the risks and benefits of treatments impair the decision-making process and may underlie variability in practice. ...
Article
Context: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting. Objective: To synthesize an evidence base of qualitative data on all outcomes selected and/or reported for neurologically impaired children 0 to 18 years living with gastrostomy/gastrojejunostomy tubes. Data sources: Medline, Embase, and Cochrane Register databases searched from inception to March 2014. Study selection: Articles examining health outcomes of neurologically impaired children living with feeding tubes. Data extraction: Outcomes were extracted and assigned to modified Outcome Measures in Rheumatology 2.0 Filter core areas; death, life impact, resource use, pathophysiological manifestations, growth and development. Results: We identified 120 unique outcomes with substantial heterogeneity in definition, measurement, and frequency of selection and/or reporting: "pathophysiological manifestation" outcomes (n = 83) in 79% of articles; "growth and development" outcomes (n = 13) in 55% of articles; "death" outcomes (n = 3) and "life impact" outcomes (n = 17) in 39% and 37% of articles, respectively; "resource use" outcomes (n = 4) in 14%. Weight (50%), gastroesophageal reflux (35%), and site infection (25%) were the most frequently reported outcomes. Limitations: We were unable to investigate effect size of outcomes because quantitative data were not collected. Conclusions: The paucity of outcomes assessed for life impact, resource use and death hinders meaningful evidence synthesis. A COS could help overcome the current wide heterogeneity in selection and definition. These results will form the basis of a consensus process to produce a final COS.
... O ral feeding problems are prevalent in children with cerebral palsy (Benfer et al., 2013;Calis et al., 2008;Reilly & Morgan, 2008). Among children with significant oral feeding problems, gastrostomy or jejunostomy tube insertion is one management strategy that is relatively common, as it is thought to reduce the risk of aspiration and under-nutrition due to oral feeding issues (Dahlseng et al., 2012;Sullivan et al., 2005). Possible benefits that have been reported in the literature include improved child nutrition, health, growth, and neurodevelopment, and improved mental health and quality of life for both children and caregivers (Andrew, Parr, & Sullivan, 2012;Åvitsland, Birketvedt, Bjørnland, & Emblem, 2013;Craig et al., 2006;Samson-Fang, Butler, & O'Donnell, 2003;Sullivan et al., 2004Sullivan et al., , 2005. ...
Article
This review provides a summary and appraisal commentary on the treatment review by Gantasala, S., Sullivan, P.B., & Thomas, A.G. (2013) Gastrostomy feeding versus oral feeding alone for children with cerebral palsy. Cochrane Database of Systematic Reviews, 7. doi:10.1002/14651858.CD003943.pub3
... This data seems to conflict with reports of prolonged need for supplemental tube feeds in older children with neurologic disorders. 23,24 We were not able to assess the severity or degree of impairment, and it is possible that infants with a CNS diagnosis were less impaired in the NG group. Alternatively, newborn neurologic function has been shown to exhibit considerable plasticity after injury, 25,26 and our findings may reflect an inability to predict improvements in neurologic function in infants. ...
Article
Full-text available
Background: The aim of this study was to determine the tube-related complications and feeding outcomes of infants discharged home from the neonatal intensive care unit (NICU) with nasogastric (NG) tube feeding or gastrostomy (G-tube) feeding. Materials and methods: We performed a chart review of 335 infants discharged from our NICU with home NG tube or G-tube feeding between January 2009 and December 2013. The primary outcome was the incidence of feeding tube-related complications requiring emergency department (ED) visits, hospitalizations, or deaths. Secondary outcome was feeding status at 6 months postdischarge. Univariate and multivariate analyses were conducted. Results: There were 322 infants discharged with home enteral tube feeding (NG tube, n = 84; G-tube, n = 238), with available outpatient data for the 6-month postdischarge period. A total of 115 ED visits, 28 hospitalizations, and 2 deaths were due to a tube-related complication. The incidence of tube-related complications requiring an ED visit was significantly higher in the G-tube group compared with the NG tube group (33.6% vs 9.5%, P < .001). Two patients died due to a G-tube-related complication. By 6 months postdischarge, full oral feeding was achieved in 71.4% of infants in the NG tube group compared with 19.3% in the G-tube group (P < .001). Type of feeding tube and percentage of oral feeding at discharge were significantly associated with continued tube feeding at 6 months postdischarge. Conclusion: Home NG tube feeding is associated with fewer ED visits for tube-related complications compared with home G-tube feeding. Some infants could benefit from a trial home NG tube feeding.
... This indicates that the number of calories needs to be more closely monitored also in patients with a gastrostomy. In agreement with previous findings in children, 27 spastic bilateral and dyskinetic CP were also identified as predictors of low body weight. ...
Article
Full-text available
Aim: To describe eating and drinking ability in adults with cerebral palsy (CP) relative to sex, age, subtype, and severity of gross motor and hand function and nutritional status. Method: This was a cross-sectional study based on data of 2035 adults with CP, median age 26 years (range 18-78 years). The Eating and Drinking Ability Classification System (EDACS), Gross Motor Function Classification System (GMFCS), and Manual Ability Classification System (MACS) were used in addition to subtype, body weight, height, body mass index (BMI), skin fold thickness, and gastrostomy. Linear regression models were used to estimate associations between body weight and the other variables. Results: More than half of the adults (52.5%) eat and drink safely and 32.4% have dysphagia with limitations to eating and drinking safety. Weight, height, and BMI decreased with increasing EDACS levels. In EDACS level V, 86% had a gastrostomy, 23.4% in EDACS levels III to V were underweight, whereas 42.3% in EDACS levels I to II had a BMI over 25, indicating overweight or obesity. Increasing EDACS levels and need of support during meals were associated with lower body weight. Interpretation: Adults with CP should be routinely screened and treated for dysphagia to avoid nutritional complications. Being dependent on others during mealtimes is a risk factor for low body weight.
... In some instances, tube feeding may be needed either temporarily or long term. [5][6][7][8] It is expected, with rare exceptions, that these children can cope with at least minimal tastes for pleasure, a practice that may have a positive impact on management of saliva/secretions while maintaining oral function and swallowing. ...
Article
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Children with cerebral palsy (CP) are at risk for aspiration with oral feeding with potential pulmonary consequences, and commonly have reduced nutrition/hydration status and prolonged stressful meal times. There is considerable variability in the nature and severity of swallowing problems in these children whose needs change over time. Children with generalized severe motor impairment (for example, spastic quadriplegia) are likely to experience greater swallowing deficits than those with diplegia, but oropharyngeal dysphagia is prevalent even in children with mild CP. This review is focused on dysphagia in children with CP: types of deficits, clinical and instrumental evaluation, management decision making and evidence of effectiveness of interventions.
... A European study on children with cerebral palsy also found a difference in prevalence of gastrostomy across Europe with the highest prevalence in Sweden and the lowest prevalence in Portugal. 16 The study also found a low prevalence in Northern England. Our study did not find a low prevalence of gastrostomy in the English registries. ...
Article
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Objective To report and compare the proportion of children with and without congenital anomalies undergoing gastrostomy for tube feeding in their first 5 years. Methods A European, population-based data-linkage cohort study (EUROlinkCAT). Children up to 5 years of age registered in nine EUROCAT registries (national and regional) in six countries and children without congenital anomalies (reference children) living in the same geographical areas were included. Data on hospitalisation and surgical procedures for all children were obtained by electronic linkage to hospital databases. Results The study included 91 504 EUROCAT children and 1 960 272 reference children. Overall, 1200 (1.3%, 95% CI 1.2% to 1.6%) EUROCAT children and 374 (0.016%, 95% CI 0.009% to 0.026%) reference children had a surgical code for gastrostomy within the first 5 years of life. There were geographical variations across Europe with higher rates in Northern Europe compared with Southern Europe. Around one in four children with Cornelia de Lange syndrome and Wolf-Hirschhorn syndrome had a gastrostomy. Among children with structural anomalies, those with oesophageal atresia had the highest proportion of gastrostomy (15.9%). Conclusions This study including almost 2 million reference children in Europe found that only 0.016% of these children had a surgery code for gastrostomy before age 5 years. The children with congenital anomalies were on average 80 times more likely to need a gastrostomy before age 5 years than children without congenital anomalies. More than two-thirds of gastrostomy procedures performed within the first 5 years of life were in children with congenital anomalies.
... Another group of patients seen in adult services with gastrostomies are patients with cerebral palsy. Gastrostomy insertion is increasingly being performed in children with this condition with the aim of improving weight, nutritional indices and quality of life (69)(70)(71) . These individuals are then moved into adult services as they reach adulthood. ...
Article
Malnutrition can adversely affect physical and psychological function, influencing both morbidity and mortality. Despite the prevalence of malnutrition and its associated health and economic costs, malnutrition remains under-detected and under-treated in differing healthcare settings. For a subgroup of malnourished individuals, a gastrostomy (a feeding tube placed directly into the stomach) may be required to provide long-term nutritional support. In this review we explore the spectrum and consequences of malnutrition in differing healthcare settings. We then specifically review gastrostomies as a method of providing nutritional support. The review highlights the origins of gastrostomies, and discusses how endoscopic and radiological advances have culminated in an increased demand and placement of gastrostomy feeding tubes. Several studies have raised concerns about the benefits derived following this intervention and also about the patients selected to undergo this procedure. These studies are discussed in detail in this review, alongside suggestions for future research to help better delineate those who will benefit most from this intervention, and improve understanding about how gastrostomies influence nutritional outcomes.
... Review nutrition, gastrostomy tube feeding can be considered on the basis of a comprehensive assessment by a multidisciplinary team. 48,49 Management should also focus on prevention of contractures and orthopaedic complications. 49 Little evidence supports the use of pharmacological treatment of dystonia and choreoathetosis in people with DCP. ...
Article
Cerebral palsy is the most frequent cause of severe physical disability in childhood. Dyskinetic cerebral palsy (DCP) is the second most common type of cerebral palsy after spastic forms. DCP is typically caused by non-progressive lesions to the basal ganglia or thalamus, or both, and is characterised by abnormal postures or movements associated with impaired tone regulation or movement coordination. In DCP, two major movement disorders, dystonia and choreoathetosis, are present together most of the time. Dystonia is often more pronounced and severe than choreoathetosis, with a major effect on daily activity, quality of life, and societal participation. The pathophysiology of both movement disorders is largely unknown. Some emerging hypotheses are an imbalance between indirect and direct basal ganglia pathways, disturbed sensory processing, and impaired plasticity in the basal ganglia. Rehabilitation strategies are typically multidisciplinary. Use of oral drugs to provide symptomatic relief of the movement disorders is limited by adverse effects and the scarcity of evidence that the drugs are effective. Neuromodulation interventions, such as intrathecal baclofen and deep brain stimulation, are promising options.
... 2,3 In a study carried out in 6 European countries, it was reported that 1295 children were treated using a gastrostomy tube because of cerebral palsy. 4 Despite the fact that PEG tubes are widely used for children and their implantation is regarded as a safe procedure, it can result in some complications. The most frequently observed minor complications following a PEG procedure are peristomal skin problems. ...
Article
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Objective: There are a limited number of studies examining the effects of products used in stoma care. This study compares the effects of 3 different methods of care on the peristomal skin integrity of children with percutaneous endoscopic gastrostomy (PEG) tubes. Methods: In this randomized controlled study, 60 children were allocated to the 3 study groups (group 1: hydrogel, group 2: soap and water, group 3: saline solution). Dressings were changed daily for all groups during the first week, then weekly for group 1 and daily for groups 2 and 3. The evaluations were performed using a PEG Region Peristomal Skin Integrity Observation Form and devices measuring stoma region pH, moisture, and temperature. One evaluation was performed in a hospital and 4 during home visits in the first month after PEG insertion. Main results: Moisture levels in the stoma region were normal in the saline solution group, high in the hydrogel group, and low in the soap and water group (P < .05). Complications potentially affecting peristomal skin integrity in the stoma region (erythema, drainage, hemorrhage, hypergranulation tissue) were observed most frequently in the soap and water group (5%-45%) and least frequently in the hydrogel group (15%-25%). However, there was no statistically significant difference among the groups with respect to these complications (P > .05). Conclusions: Because the dressing requires 6 times fewer changes per month, and wound site infection in the stoma site is minimized, the use of glycerin hydrogel should be considered for inclusion in pediatric stoma care procedures.
... As in the present series, cryptorchidism was bilateral in the majority of cases. The similarity between the frequency distributions of the majority of variables that we analyzed and those reported previously in CP (1,2,4,(9)(10)(11)(15)(16)(17)(18)(19)(20)(21)(22) supports the reliability of our data. Smith and colleagues suggested a role for muscle spasticity in the etiology of cryptorchidism in boys with CP. ...
Article
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Background Cryptorchidism is reported in 40–50% of small case series of cerebral palsy (CP) and attributed to hypothalamic–pituitary–gonadal axis abnormalities, intellectual disability (ID), or cremaster spasticity. We collected demographic and clinical data to define the frequency of cryptorchidism and clinical comorbidities in a large CP population.Methods Electronic health record data were collected for all male patients ≥7 years of age seen in a large, multidisciplinary CP clinic between 2000 and 2016. Variables including age, testicular position, surgical findings, CP severity, birth history, and comorbidities were tested for association using univariable and stepwise backward logistic regression analyses.ResultsOf 839 established patients, testis position was scrotal in 553, undescended in 185 (24%), retractile in 38 (5%), and undocumented in 63 cases. Cryptorchidism were diagnosed at a mean age of 5.8 years, with 20% documented as acquired, and testes were most commonly in the superficial inguinal pouch (41%) and associated with an inguinal hernia (56%). Severity was bilateral in 114/166 (69%) undescended and 24/36 (66%) retractile cases, respectively. Mean birth weight and the frequency of prematurity (55, 58, and 54%) and multiple birth (14, 13, and 9%) were not significantly different among the three groups. We observed a strong ordinal trend in the frequency of comorbidities, including quadriplegia, syndromic features/known genetic disease, intrauterine growth restriction (IUGR), death, brain malformations, seizures, gastrostomy, absent continence, ID and hearing, speech or visual impairment, with the retractile group holding the intermediate position for the majority. The stepwise multivariable analysis showed independent positive associations of cryptorchidism with quadriplegia, syndromic features/known genetic disease, hearing loss, and absent continence, and inverse associations with gestational age and multiple birth.Conclusion These data suggest that cryptorchidism is less common than previously reported in CP cases, but most strongly associated with quadriplegia. Delayed diagnosis may be related to an acquired condition or to the multiple additional functional deficits that occur in this population. Our data suggest that UDT and CP may both be components of malformation syndromes occurring in singleton births whose clinical features are more likely to include earlier delivery, IUGR, hearing loss, and/or global spasticity.
... Taken as a whole, these studies provide evidence of a strong association between placement of (and need for) a feeding tube with elevated mortality risk, all else being equal. Of course, association is not causation, and a number of reviews have pointed out the difficulties in interpretation of this association [33][34][35][36][37]. As one noted, "Mortality rates range from 7 to 29% but there is no way to ascertain the degree to which mortality can be attributed to the intervention" [33]. ...
... 9 The results were similar to the findings of outcome reporting across studies in other childhood diseases that includes substantial heterogeneity in the outcomes selected for measurement, absent or inadequate reporting of outcome definitions, and limited reporting of the rationale for outcome selection. 3,[7][8][9][10][11][12][13] Without a consistent approach to the selection, definition, and reporting of outcomes in clinical studies, between-study comparisons and meta-analyses are impaired, and meaningful interpretation of pooled data is challenging, 14,15 as demonstrated, for example, in a systematic review of surgical interventions for feeding difficulties in children with cerebral palsy. 16 One solution to these issues is the development and implementation of a core outcome set (COS) for children with neurological impairment and tube feeding. ...
Article
Aim: To develop a core outcome set (COS) for evaluating gastrostomy/gastrojejunostomy tube impact in children with neurological impairment. Method: Healthcare providers/researchers and caregivers rated the importance of candidate outcomes on a 5-point Likert scale. Outcomes rated 'somewhat important' or 'very important' by most (≥85%) respondents were voted on during a consensus meeting. Outcomes that reached consensus for inclusion were ratified and assigned to Outcome Measures in Rheumatology filter core areas. The COS was validated in a separate group of caregivers. Results: Twelve outcomes were selected from 120 candidate outcomes to form the COS. These included five 'Life Impact' outcomes, three 'Pathophysiological Manifestations' outcomes, two 'Resource Use' outcomes, one 'Growth and Development' outcome, and one 'Death' outcome. Interpretation: We developed an evidence-informed and consensus-based COS for use in studies of gastrostomy/gastrojejunostomy tube feeding in children with neurological impairment. Implementation of this COS will help reduce heterogeneity between studies and facilitate evidence-based decision-making. What this paper adds: Caregivers, healthcare providers, and researchers ranked the importance of 120 outcomes. Twelve core outcomes were identified as essential to measure in future clinical research studies.
... Because the semi-structured interviews were carried out via telephone conversation, participants had to be able to communicate verbally in English to participate in that portion of the study. Exclusion criteria included feeding via nasogastric tube since this feeding method is not recommended for use exceeding 6 weeks (Dahlseng et al., 2012) and this study looked at how enteral feedings were integrated into family mealtime routines over a longer period of time. Of the 36 volunteer participants who completed the online survey, six participated in the semi-structured interview. ...
Article
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Background/aim: Enteral feedings are part of the daily mealtime experience for many caregivers of children with cerebral palsy. The scope of occupational therapy practice incorporates multiple aspects of the enteral feeding process. Yet, the research in this area is very limited. The purpose of this study was to provide practitioners with better understanding of the impact enteral feedings of children with cerebral palsy have on family mealtime routines. Methods: Using a complimentary mixed method approach, data were obtained through an online survey containing the Satisfaction Questionnaire with Gastrostomy Feeding (SAGA-8) and supplementary questions, and qualitative semi-structured phone interviews. Participants were caregivers of children with cerebral palsy who receive their primary nutrition through a gastrostomy tube. Results: This study's cohort consisted of n = 36, SAGA-8, and n = 6 in-depth interviews. The mean age of children of was 9.4 (6.94 SD) with a mean age of 3.4 (5.35 SD) when enteral feeding was introduced. While families' overall situations positively changed after the gastronomy tube placement, environmental barriers and length of feeding time continued to present a challenge to mealtime routines. The mixed methods data analysis revealed that successful adjustment to having a child with a gastronomy tube and problem solving are closely linked and a consistent part of mealtime experience. Conclusion: Findings highlighted the necessity of comprehensive support from health professionals in achieving positive mealtime experience. Themes in this study indicated that caregivers would benefit from a professional with knowledge in the development and integration of rituals and routines to support positive outcomes.
... The proportion of students fed by gastrostomy in our study (31.3%, 25% exclusively and 6.3% mixed) was greater than that obtained by other authors. Caramico et al. noted 17.5% (12.5% exclusively and 5% mixed) after assessing 40 children with CP [83], and Dahlseng described gastrostomies at 11% [34]. However, when Dahlseng stratified the CP patients according to GMFCS (Level IV-V), the prevalence was 32%, which coincides with the numbers in our study. ...
Article
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Background: Special needs schools (SNS) educate children and young people with major neurological disabilities who are at high risk of oropharyngeal dysphagia (OD) and malnutrition (MN). We aimed to assess the prevalence of OD, MN, dehydration (DH), and oral health (OH) in students at an SNS. Methods: A cross-sectional observational study was conducted at SNS L'Arboç, Catalonia, Spain. We assessed (a) demographics, health status, comorbidities, and gross motor function classification system (GMFCS), (b) swallowing function, oral-motor evaluation, masticatory capacity, and EDACS classification for eating and drinking abilities, (c) nutritional and DH status (anthropometry, bioimpedance and dietary records), and (d) OH (Oral Hygiene Index Simplified). Results: A total of 33 students (mean age 13.3 years; 39.4% level V of GMFCS) were included. Main diagnosis was cerebral palsy at 57.6%. All students presented OD, 90.6% had impaired safety, 68.7% were at levels II-III of EDACS, and 31.3% required PEG; furthermore, 89.3% had chronic MN, 21.4% had acute MN, 70% presented intracellular DH, and 83.9% presented impaired OH. Conclusion: MN, DH, OD, and poor OH are highly prevalent conditions in students with cerebral palsy and other neurological disabilities and must be specifically managed through nutritional and educational strategies. The multidisciplinary team at SNS should include healthcare professionals specifically trained in these conditions.
Article
Background: The aim of this study was to evaluate 24-hour pH monitoring results before and after gastrostomy in neurological impaired (NI) children who underwent gastrostomy or Nissen fundoplication (NF) concurrently with gastrostomy. Materials and Methods: Between March and December 2018, NI patients who had previously received pre- and postgastrostomy (Group 1) or gastrostomy + NF (Group 2) underwent pH monitoring pre- and postoperatively. Results: Twenty patients [12 males (60%) and the median age of 5.6 (14 months-14.7 years) years] with NI were followed up during the study period. When pre- and postgastrostomy weight and BMI z-scores were compared, the results were significantly higher in both groups after procedure (P = .043, P = .040, respectively). The clinical results of the patients after the operation showed improvement in both groups. The pH index of Group 1 (n = 11) was 2.32 (0-3.8) before gastrostomy and 3.18 (2.1-6.9) after gastrostomy (P = .061) and in Group 2 (n = 9) it was 5.85 (4.9-15.8) and 0.61 (0.3-1.3), before and after procedure (P < .001). There was a statistically significant difference in reflux index of each group. This difference was not statistically significant between the groups (P = .072). When the total bolus exposure index was compared, it was 4.01 (2.1-5.2) before gastrostomy and 5.67 (4.6-6.3) after gastrostomy in Group 1 (P = .041). In group 2, that index was found to be 9.8 (8.3-10.2) before and 1.28 (0.5-1.4) after (P < .001). There was a statistically significant difference in index after gastrostomy in Groups 1 and 2 (P = .023). Conclusions: Gastrostomy feeding is an effective and safe option to achieve enteral feeding in NI children. NF concurrent with gastrostomy should be decided according to the individual patient. Clinical trials protocol registration ID number was PRS NCT00445112.
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This commentary is on the original article by Dahlseng et al. on pages 938‐944 of this issue.
Article
To estimate the prevalence of undernutrition among children with profound intellectual and multiple disabilities (PIMD) and to explore its influence on quality of life. Seventy-two children with PIMD (47 male; 25 female; age range 2 to 15 years 4 months; mean age 8.6, SD 3.6) underwent an anthropometric assessment, including body weight, triceps skinfold thickness, segmental measures and recumbent length. Undernutrition was determined using tricipital skinfold percentile and z-scores of weight-for-height and height-for-age. The quality of life of each child was evaluated using the QUALIN questionnaire adapted for profoundly disabled children. Twenty-five children (34.7%) were undernourished and seven (9.7%) were obese. Among undernourished children only eight (32 %) were receiving food supplements and two (8%) had a gastrostomy, of which one was still on a refeeding programme. On multivariate analysis, undernutrition was one of the independent predictors of lower quality of life. Undernutrition remains a matter of concern in children with PIMD. There is a need to better train professionals in systematically assessing the nutritional status of profoundly disabled children in order to start nutritional management when necessary.
Article
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Abstract Eating disorders in children can be caused by immaturity, various diseases and disorders of the nervous system, respiratory system, heart and gastrointestinal tract, and environmental factors. In case of serious consequences for the child's health, the child, at least for a transitional period, needs to be inserted a feeding tube. With the improvement of health and functional capabilities, the tube can be removed, but the child may refuse to feed through the mouth. A multidisciplinary approach and parental involvement is needed to treat such a child. Several models are known. We present the case of a girl who needed to be fed through a tube when she was recovering from intestinal inflammation at the age of nine months. All other diseases were excluded. When the problems subsided, she refused to switch from tube feeding to mouth feeding. She was born prematurely, sensory sensitive, with less mature attention and specific problems in the field of speech-language communication. She joined the sensory oral stimulation program for the first time at the age of 16 months. In the following months, she made so much progress in accepting different flavours and food structures that we decided to include her into a feeding tube weaning program. We transferred the key elements of the multidisciplinary approach to our clinical praxis and successfully completed the transition of the girl to full feeding through the mouth in a three-week program. Povzetek Motnje hranjenja in požiranja pri otroku so lahko posledica nezrelosti, različnih bolezni in okvar živčevja, dihal, srca in prebavil ter dejavnikov okolja. V primeru, da je zaradi teh motenj ogroženo zdravje otroka, je otroku, vsaj za prehodno obdobje, potrebno vstaviti cevko za hranjenje. Ob izboljšanju zdravstvenega stanja in funkcijskih zmožnosti lahko cevko odstranimo, pri čemer otrok lahko zavrne hranjenje skozi usta. Za obravnavo takega otroka je potreben multidisciplinarni pristop in sodelovanje staršev. V svetu poznamo več modelov. Predstavljamo primer deklice, ki je ob prebolevanju črevesne-ga vnetja v starosti devet mesecev potrebovala hranjenje po hranilni cevki. Vse ostale bolezni so izključili. Ko so težave izzvenele, je zavrnila prehod s hranjenja po cevki na hranjenje skozi usta. Deklica je bila rojena prezgodaj, senzorno občutljiva, z manj zrelo pozornostjo in specifični-mi težavami na področju govorno-jezikovne komunikacije. V program stopenjske senzorne stimulacije za izboljšanje veščine hranjenja se je prvič vključila v starosti 16 mesecev. V naslednjih osmih mesecih je tako napredovala pri spreje-manju različnih okusov in tekstur hrane, da smo se odločili za program odvajanja od hranjenja po hranilni cevki. Ključne elemente multidisciplinarnega pristopa smo prenesli v naše klinično okolje in v tritedenskem programu pri deklici uspešno izpeljali prehod na polno hranjenje skozi usta.
Article
Children with cerebral palsy have variable medical and developmental needs, which impact their ability to grow and function independently. Therapy interventions for fine motor skills, speech and mobility skills can be of benefit. The importance of optimizing vision, hearing, nutrition, and spasticity control also impacts learning, growth and function as well as reducing secondary complications such as fractures. This article reviews recent literature for clinical updates that impact these areas.
Article
Gastrostomy is becoming an increasingly common procedure in the paediatric population. We present a review summary of indications and benefits of gastrostomy in children. Technical aspects of gastrostomy insertion, different types of gastrostomy tubes, as well as details of management and prevention and treatment of complications have also been discussed.
Article
Introduction and aims Oropharyngeal dysphagia and gastroesophageal reflux are risk factors for respiratory disease in cerebral palsy (CP). Some children require gastrostomy to ensure adequate nutrition and growth and for administration of medication. The European prevalence of gastrostomy is 3-22%. The aim was to determine the prevalence of gastrostomy feeding, gastrojejunal (GJ) tubes and fundoplication in WA children with CP aged 0-12 years. Methods All children aged 0-12 years on the WA CP Register with Gross Motor Functional Classification Scale (GMFCS) III to V currently receiving care at Perth Children’s Hospital were included. Data collected included age, gender, GMFCS level and the presence of gastrostomy, fundoplication and/or GJ tube and the year and mode of insertion. Ethical approval was obtained. Results 221 children were included, mean age of 6.5 years (SD =3.4) and 119 (54%) males. 89 (40%) children had a gastrostomy. Age at insertion varied from 0-9 years with a mean of 2.8 years. The presence of gastrostomy was 12%, 24% and 72% for GMFCS III, IV and V respectively. GJ prevalence was 2%, 4% and 20% for GMFCS III, IV and V, respectively. Only 8 children had a fundoplication. Conclusion As GMFCS III-V comprises 33.5% of the WA CP population, the prevalence of gastrostomy feeding is 14%, GJ is 3% and fundoplication is 1%. The rates of gastrostomy, fundoplication and GJ tube feeding increase with GMFCS level.
Article
Background Children with intellectual and developmental disabilities (IDD), particularly those with medical complexity, account for a large proportion of pediatric inpatients and are increasingly surviving to adulthood. However, few studies have evaluated the inpatient care of this population after transition to adult hospitals. This paper describes a Med-Peds Hospitalist service providing inpatient consultation for young adults with childhood conditions and offers a window into issues likely to be faced by young adults with IDD as they face increased admissions to adult hospitals. Methods A single center retrospective chart review was performed of adults with intellectual and developmental disabilities referred to the Med-Peds consult service at a large urban adult academic medical center. Findings The most common medical recommendations provided focused on diagnosis and management of gastrointestinal, neurologic, and respiratory issues. Coordination between pediatric and adult caregivers, disposition planning, communication and family support, and guidance on weight-based dosing were also commonly provided services. Discussion Young adults with IDD face new challenges when admitted to adult hospitals. In this single-center study, several areas were identified where expert consultation could be helpful. The need for structured coordination of care for this vulnerable patient population was highlighted. Knowledgeable consultative services may be an effective intervention to address the unique needs of hospitalized young adults with IDD. Application to practice Hospitals should consider structured inpatient programs, care-paths, or consultation from providers knowledgeable in the care of young adults with intellectual disabilities in order to improve the inpatient care of this population.
Article
At least a third of children with moderate to severe cerebral palsy (CP) will have feeding difficulties. Malnutrition should not be considered normal in children with CP. Early, persistent, and severe feeding difficulties are a marker for subsequent poor growth and developmental outcomes. Growth patterns in children with cerebral palsy are associated with their overall health and social participation. Growth restriction increases progressively with age and thus mandates early nutritional intervention. In children with severe CP such nutritional intervention is increasingly being administered by gastrostomy feeding tube but controversy surrounds the evidence-base for this approach. Moreover, mothers' decisions about gastrostomy feeding are complex and difficult and must be taken into account in making therapeutic recommendations. This paper discusses the available research evidence and psychosocial issues around gastrostomy feeding in children with severe CP. It seeks to provide a basis for rational clinical decision-making based upon the integration of the best available research evidence with clinical experience and patient values.
Book
Este guia tem como principais objetivos auxiliar o leitor a tomar uma decisão informada relativamente à gastrostomia endoscópica percutânea (PEG), clarificar dúvidas e esclarecer acerca dos cuidados necessários à alimentação por sonda.
Article
Nutrition support involves the use of oral supplements, enteral tube feeding or parenteral nutrition. These interventions are considered when oral intake alone fails to meet nutritional requirements. Special diets and oral supplements are usually the first approach to managing malnutrition; however, their role becomes limited when oral intake is restricted or if swallowing is unsafe. Enteral tube feeding or parenteral nutrition are alternative means of providing nutrition support for this select group of patients. Percutaneous endoscopic gastrostomy (PEG) feeding was introduced into clinical practice in 1980. It describes a feeding tube placed directly into the stomach under endoscopic guidance. It is an established means of providing enteral nutrition to those who have functionally normal gastrointestinal tracts, but who cannot meet their nutritional requirements due to inadequate oral intake. The intervention is usually reserved when nutritional intake is likely to be inadequate for more than 4–6 weeks. Although the benefits of PEG have been shown for a select group of patients, there currently exists concerns about the increasing frequency of this intervention, and also uncertainty about the long-term benefits for certain patients. The 2004 UK National Confidential Enquiry into Patient Outcome and Death report emphasised this concern, with almost a fifth of PEG being undertaken for futile indications that negatively influenced morbidity and mortality. The present review paper discusses the indications for, controversies surrounding and complications of gastrostomy feeding and provides practical advice on optimising patient selection for this intervention.
Article
Aim: To investigate the prevalence of orofacial dysfunction (OFD) and explore factors associated with OFD in young individuals with cerebral palsy (CP). Method: We conducted a cross-sectional study on a population with CP in a Swedish county (132 individuals, mean age 14y 2mo [SD 4y 5mo], range 5-22y) using the Nordic Orofacial Test - Screening (NOT-S), Gross Motor Function Classification System (GMFCS), and Manual Ability Classification System (MACS). The NOT-S interview was completed by 129 individuals (76 males, 53 females) of whom 52 (30 males, 22 females) also agreed to complete the NOT-S examination. Results: OFD occurred in at least one NOT-S domain in about 80% of the individuals and was present in all subdiagnoses, GMFCS levels, and MACS levels. Prevalence of OFD increased with increasing levels of GMFCS and MACS from level I=55% to level V=100%. Within the 12 NOT-S domains, the prevalence of OFD varied between 19% and 69%, wherein seven of them were at least 40%: 'Drooling', 'Nose breathing', 'Chewing and swallowing', 'Face at rest', 'Oral motor function', 'Speech', and 'Facial expression' (in ascending order). Interpretation: OFD is common in CP. The use of OFD screening in health service planning would assist detection of areas in need of further evaluation.
Article
The scope of pediatric dysphagia spans ages from birth to young adulthood. The functional concerns include sucking and swallowing in infancy; transition to semisolid purees; the acquisition and performance of mature, independent, eating behaviors that include biting, chewing, and drinking from cup and straw; and the progressive increase in efficiency of swallowing to support the increased calorie and hydration needs that are associated with growth [1]. This need for ongoing improvements in eating efficiency continues until the individual can sustain adult demands for nutrition and hydration. In addition, developmental competencies include sequences for increasing maturity in medications and saliva swallowing [2]. While the physiology of the oropharyngeal and esophageal phases of swallowing in children may differ somewhat from the adult, the concerns for timely initiation of the pharyngeal swallowing response, pharyngeal clearance, airway protection, and esophageal motility are similar.
Article
Cerebral palsy is the most common cause of severe neuromotor disorder in children, affecting 2-3/1000 of live-born children. European network of registries of children with cerebral palsy "Surveillance of cerebral palsy in Europe", was founded in 1998. The main goal of this project is to establish a central database of children with cerebral palsy with the purpose of monitoring trends in prevalence of cerebral palsy, especially for the gestational age specific prevalence, submitting data on plans for facilities and personnel and common research. The most important achievements so far are the harmonization of standards, the definition and classification of cerebral palsy. European classification of cerebral palsy is based on neurological symptoms: spastic, dyskinetic and ataxic type. Spastic type consists of two subtypes: unilateral spastic (which includes the previously used term hemiplegia and hemiparesis) and bilateral spastic including expressions di-, tri- or tetraparesis. Due to changing of the clinical findings of motor disorder, the final diagnosis and classification are not allowed before 4 years of age, minimally at 3 years, optimally 5 years. Additionally, classification also recommends functional assessment for the legs and arms by standardized instruments: Gross Motor Function Classification System and Bimanual Fine Motor Function classification or lately more accepted Manual Ability Classification System. This system of instruments is used to objectivise the functional status of children with cerebral palsy, but also in the evaluation of therapeutic procedures. Children with cerebral palsy often have mild to severe associated neurodevelopmental disorders: visual and hearing impairments, epilepsy, intellectual impairment, disorders of speech, sensory and perception. New projects include standardization of neuroimaging findings, particularly magnetic resonance imaging, as an important diagnostic procedure which demonstrates non-progressive lesion or maldevelopment of the brain that causes cerebral palsy. Definition, criteria and classification of cerebral palsy proposed by this classification achieved consensus of the minimum data on a child with cerebral palsy, establishing a common language that enabled the foundation of a reliable database across the Europe.
Article
Objective: To determine changes in prevalence and severity of oropharyngeal dysphagia (OPD) in children with cerebral palsy (CP) and relationship to health outcomes. Design: Longitudinal cohort study. Setting: Community and tertiary institutions. Participants: 53 children with confirmed CP diagnosis assessed first at 18-24 months (Ax1 mean age 22.9 months c.a. (SD=2.9), 33 males, Gross Motor Function Classification System (GMFCS) I=22, II=7, III=11, IV=5, V=8) and at 36 months (Ax2). Interventions: none MAIN OUTCOME MEASURES: OPD was classified using the Dysphagia Disorders Survey (DDS) and signs suggestive of pharyngeal dysphagia. Nutritional status was measured using Z-scores for weight, height, and body mass index (BMI). Gross motor skills were classified on GMFCS and motor type/ distribution. Results: Prevalence of OPD reduced from 62% to 59% between ages. 30% of children had an improvement in severity of OPD (>smallest detectable change), and 4% had worse OPD. Gross motor function was strongly associated with OPD at both assessments, on the DDS (Ax1 OR=20.3, p=0.011; Ax2 OR=28.9, p=0.002), pharyngeal signs (Ax 1 OR=10.6, p=0.007; Ax2 OR=15.8, p=0.003), and OPD severity (Ax1 β=6.1, p<0.001; Ax2 β=5.5 p<0.001). OPD at 18-24 months was related to health outcomes at 36 months: low Z-scores for weight (adj β=1.2, p=0.03) and BMI (adj β=1.1, p=0.048), increased parent stress (adj OR=1.1, p=0.049). Conclusions: Classification and severity of OPD remained relatively stable between 18-24 months and 36 months. Gross motor function was the best predictor of OPD. These findings contribute to developing more effective screening processes which consider critical developmental transitions which are anticipated to present challenges for children from each of the GMFCS levels.
Article
Background & aims: Children with cerebral palsy (CP) are at risk for under-nutrition. The European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines identified anthropometric nutritional red flags for neurologically impaired children: weight for age z-score (WFA) < -2, triceps skinfold (TSF) or arm muscle area (AMA) < 10th centile and faltering weight. This study aimed to (1) evaluate the nutritional status of Flemish children and adolescents with CP using different anthropometric indicators; (2) assess the prevalence of nutritional red flags and (3) identify risk factors for low anthropometric parameters. Methods: This study was a prospective, longitudinal observational study recruiting children and adolescents with CP (2-20 years) in 9 specialized Flemish centres. Measurements were performed at baseline (t1, n = 325), after 6 (t2, total n = 268) and 12 months (t3, total n = 191). WFA z-scores were based on Flemish growth charts; TSF, subscapular skinfolds (SSF) and AMA compared with US reference data. Weight faltering was defined as ≥0.5 decrease in weight SDS at t2 or t3. Results: At t1 50 patients (15.4%) were classified as gross motor function classification system (GMFCS) 1, 95 (29.2%) as GMFCS 2, 49 (15.1%) as GMFCS 3, 54 (16.6%) as GMFCS 4, and 77 (23.7%) as GMFCS 5. The overall median (Q1; Q3) age was 11.7 (8.2; 15.9) years; 61.5% were boys and 22 (6.8%) had a gastrostomy (17 (22.1%) of GMFCS 5 group). The median (Q1; Q3) WFA z-score was -1.13 (-2.6; -0.1); 71.4% of the GMFCS 5 children had a WFA z-score < -2. The median (Q1; Q3) MUAC z-score was 0.17 (-0.7; 1.0); 16.9% of the GFMCS 5 children had MUAC z-score < -2. Median (Q1; Q3) TSF and SSF z-scores were respectively -0.01 (-0.8; 0.9) and 0.27 (-0.3; 0.9). All anthropometric indices tended to decrease with increasing GMFCS (p < 0.001). At t1 42.1% had at least one nutritional red flag, at t2 40.3% and at t3 41.4%. Of those with at least one nutritional red flag at t1 or t2, respectively 14.7% and 18.8% suffered weight loss 6 months later. A GMFCS >2 and dysphagia were associated with a higher risk for lower scores of nearly all nutritional indices. Conclusions: Underweight was detected in almost three quarters of CP patients with GMFCS 5 classification, whereas deficits in subcutaneous fat and arm muscle reserve were observed in one fifth. Nutritional red flags, present in about 40% of the Flemish CP children, were apparently not successfully addressed in clinical practice, since up to one-fifth of CP patients with warning signs lost even further weight in the following 6 months. Beside a GMFCS >2, dysphagia was one of the most common conditions influencing the presence of low nutritional indices.
Research
• Cerebral palsy is a developmental disorder of movement and posture which is often associated with comorbidities. • While there is currently a limited range of evidence‐based treatments that change the underlying pathology of cerebral palsy, there are many areas in which health care professionals can change the natural history of cerebral palsy and improve participation and quality of life for children with this condition. • Early identification has become of paramount importance in the management of cerebral palsy, and it is hoped that it will allow earlier access to cerebral palsy interventions that may improve the natural history of the condition. • Common challenges in the management of cerebral palsy include spasticity and dystonia, management of pain, hip surveillance, sleep and feeding, swallowing and nutrition. • The six Fs framework (function, family, fitness, fun, friends and future) provides a guide to developing shared goals with families in the management of cerebral palsy.
Article
Aim To describe the characteristics of emergency department (ED) presentations due to complications from gastrostomy or gastrojejunal feeding tubes among children with cerebral palsy (CP), the complexity of complications and the management approaches taken. Methods The Victorian CP Register was linked to the ED databases of Victoria's two tertiary paediatric hospitals, and data on presentations due to feeding tube complications were identified based on discharge diagnosis codes. Additional data on presentations were extracted from medical records. Results Over 5 years, there were 234 ED presentations due to feeding tube‐related complaints among a CP cohort (n = 2183). ED notes were located for 183 of the 234 presentations. The majority of presentations (90%) involved children with severe gross motor impairment. A total of 46% of presentations (n = 84) was triaged as lower urgency, and 68% (n = 124) took place between 08:00 am and 06:00 pm. The most common presenting complaint was tube dislodgement (n = 105; 70%). No investigations were recorded in the majority of cases, and in almost 90% of cases, the feeding tube was successfully replaced in the ED, usually by an ED physician (n = 74) and less frequently by a surgeon (n = 9), gastroenterologist (n = 2) or nurse (n = 8); 9% (n = 17) resulted in a hospital admission. Conclusions Most ED presentations due to feeding tube complaints in children with CP are in children with severe gross motor impairment but are able to be managed in the ED. As such, it is likely that care givers and other health professionals could manage some of the complications experienced in primary health‐care settings closer to home.
Article
Cornelia de Lange syndrome (CdLS) is a genetic condition characterized by intellectual disability, peculiar facial dysmorphisms, multiorgan malformations, and growth problems. Majority cases of CdLS are caused by mutations in genes of Cohesin pathway. Although feeding problems are a well‐known feature, no specific data have been published about the use of nutritional devices. We analyzed use, type, time of introduction, and duration of nutritional devices in 73 CdLS patients. In total, 29/73 (40%) used a device; nasogastric tube (NGT) in 28/73 (38%) and percutaneous endoscopic gastrostomy (PEG) in 7/73 (10%). NGT was placed during the first days/weeks of life. 19/28 (68%) maintained it for less than 3 months, 7/28 (25%) for a period between 3 and 12 months, while 2/28 (7%) for more than 1 year. PEG was placed within the first year in 4/7 (57%) and removed in two patients after 4 years These data have been matched with a wide number of genetic and clinical variables. Presence of upper limb malformations is positively correlated with the need of a device. From the opposite side, the use of a device positively correlates with a more severe prognosis as regard growth, intellectual development and disease severity. Our data show that nutritional devices are frequently used by CdLS patients, also if the majority of them (93.1%) succeed with time in achieving a normal oral nutrition. Finally, the need, the type of device used and the duration of NGT or/plus PEG can be considered a further sign of worse prognosis of the disease itself.
Article
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Background: Feeding disorders are multifaceted with behavioral components often contributing to the development and continuation of food refusal. In these cases, behavioral interventions are effective in treating feeding problems, even when medical or oral motor components are also involved. Although behavioral interventions for feeding problems are frequently employed with children with autism, they are less commonly discussed for children with cerebral palsy. Objective: The purpose of this study was to compare the effectiveness of using applied behavior analytic interventions to address feeding difficulties and tube dependence in children with autism and children with cerebral palsy. Method: Children ages 1 to 12 years who were enrolled in an intensive feeding program between 2003 and 2013, where they received individualized behavioral treatment, participated. Results: Behavioral treatment components were similar across groups, predominately consisting of escape extinction (e.g., nonremoval of the spoon) and differential reinforcement. For both groups, behavioral treatment was similarly effective in increasing gram consumption and in decreasing refusal and negative vocalizations. A high percentage of individualized goals were met by both groups as well as high caregiver satisfaction reported. Conclusions: Behavioral interventions for food refusal are effective for children with cerebral palsy with behavioral refusal, just as they are for children with autism.
Article
This commentary is on the original article by Murphy et al. on pages 945‐950 of this issue.
Article
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To address the need for a standardized system to classify the gross motor function of children with cerebral palsy, the authors developed a five-level classification system analogous to the staging and grading systems used in medicine. Nominal group process and Delphi survey consensus methods were used to examine content validity and revise the classification system until consensus among 48 experts (physical therapists, occupational therapists, and developmental pediatricians with expertise in cerebral palsy) was achieved. Interrater reliability (k) was 0.55 for children less than 2 years of age and 0.75 for children 2 to 12 years of age. The classification system has application for clinical practice, research, teaching, and administration.
Article
Full-text available
To determine life expectancy of children with cerebral palsy. Cohort analysis, by means of register compiled from multiple sources of ascertainment, of all children with cerebral palsy born during 1966-84 to mothers resident in Mersey region. Status of children was determined by flagging through NHS central register. 1258 subjects with idiopathic cerebral palsy, of whom 1251 were traced and included in analysis. Effect of functional ability (ambulation, manual dexterity, and mental ability), sex, birth weight, and gestational age on survival. 20 year survival for whole cohort was 89.3% for females and 86.9% for males. For subjects with no severe functional disabilities 20 year survival was 99% (95% confidence interval 98% to 100%), while subjects severely disabled in all three functional groups had 20 year survival of 50% (42% to 58%). Subjects with birth weight < or = 2500 g had 20 year survival of 92% (89% to 95%), while those with birth weight > 2500 g had survival of 87% (84% to 89%). Subjects with gestational age of > 37 weeks had 20 year survival of 93% (91% to 96%), while those with gestational age > or = 37 weeks had survival of 85% (83% to 88%). Birth weight and gestational age were less predictive of survival than functional disability. Best statistical model used gestational age and number of severe functional disabilities as predictors. Life expectancy of this cohort of children with cerebral palsy was greater than has been suggested in some previous studies. This has important implications for social, educational, and health services.
Article
Full-text available
To address the need for a standardized system to classify the gross motor function of children with cerebral palsy, the authors developed a five-level classification system analogous to the staging and grading systems used in medicine. Nominal group process and Delphi survey consensus methods were used to examine content validity and revise the classification system until consensus among 48 experts (physical therapists, occupational therapists, and developmental pediatricians with expertise in cerebral palsy) was achieved. Interrater reliability (kappa) was 0.55 for children less than 2 years of age and 0.75 for children 2 to 12 years of age. The classification system has application for clinical practice, research, teaching, and administration.
Article
Full-text available
This report presents the revised growth charts for the United States. It summarizes the history of the 1977 National Center for Health Statistics (NCHS) growth charts, reasons for the revision, data sources and statistical procedures used, and major features of the revised charts. Data from five national health examination surveys collected from 1963 to 1994 and five supplementary data sources were combined to establish an analytic growth chart data set. A variety of statistical procedures were used to produce smoothed percentile curves for infants (from birth to 36 months) and older children (from 2 to 20 years), using a two-stage approach. Initial curve smoothing for selected major percentiles was accomplished with various parametric and nonparametric procedures. In the second stage, a normalization procedure was used to generate z-scores that closely match the smoothed percentile curves. The 14 NCHS growth charts were revised and new body mass index-for-age (BMI-for-age) charts were created for boys and girls (http://www.cdc.gov/growthcharts). The growth percentile curves for infants and children are based primarily on national survey data. Use of national data ensures a smooth transition from the charts for infants to those for older children. These data better represent the racial/ethnic diversity and the size and growth patterns of combined breast- and formula-fed infants in the United States. New features include addition of the 3rd and 97th percentiles for all charts and extension of all charts for children and adolescents to age 20 years. Created with improved data and statistical curve smoothing procedures, the United States growth charts represent an enhanced instrument to evaluate the size and growth of infants and children.
Article
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To describe parent-reported feeding dysfunction and its association with health and nutritional status in children with cerebral palsy. Anthropometry was measured and z scores calculated. The Child Health Questionnaire was used to assess health status, and a categorical scale (none to severe) was used to classify subjects according to severity of feeding dysfunction. 230 children (9.7+/-4.6 years; 59% boys) with moderate to severe cerebral palsy were recruited from 6 centers in the United States and Canada. Descriptive statistics, the Kruskal-Wallis and Pearson chi2 tests. Severity of feeding dysfunction was strongly associated with indicators of poor health and nutritional status. The mean weight z scores were -1.7, -2.5, -3.3, and -1.8 among children with none, mild, moderate, or severe (largely tube-fed) feeding dysfunction, respectively (P= .003). Similar results were observed for height z score (P=.008), triceps z score (P=.03), and poor Global Health score (part of the Child Health Questionnaire) (P<.001). Subjects who were tube fed were taller (P=.014) and had greater body fat stores (triceps z score, P=.001) than orally fed subjects with similar motor impairment. For subjects exclusively fed by mouth, a dose-response relationship was observed between feeding dysfunction severity and poor nutritional status. Subjects with only mild feeding dysfunction had reduced triceps z score (-0.9) compared with those with no feeding problems (-0.3). For children with moderate to severe cerebral palsy, feeding dysfunction is a common problem associated with poor health and nutritional status. Even children with only mild feeding dysfunction, requiring chopped or mashed foods, may be at risk for poor nutritional status. Parental report of feeding dysfunction with a structured questionnaire may be useful in screening children for nutritional risk.
Article
Full-text available
Children with cerebral palsy frequently grow poorly. The purpose of this study was to describe observed growth patterns and their relationship to health and social participation in a representative sample of children with moderate-severe cerebral palsy. In a 6-site, multicentered, region-based cross-sectional study, multiple sources were used to identify children with moderate or severe cerebral palsy. There were 273 children enrolled, 58% male, 71% white, with Gross Motor Function Classification System levels III (22%), IV (25%), or V (53%). Anthropometric measures included: weight, knee height, upper arm length, midupper arm muscle area, triceps skinfold, and subscapular skinfold. Intraobserver and interobserver reliability was established. Health care use (days in bed, days in hospital, and visits to doctor or emergency department) and social participation (days missed of school or of usual activities for child and family) over the preceding 4 weeks were measured by questionnaire. Growth curves were developed and z scores calculated for each of the 6 measures. Cluster analysis methodology was then used to create 3 distinct groups of subjects based on average z scores across the 6 measures chosen to provide an overview of growth. Gender-specific growth curves with 10th, 25th, 50th, 75th, and 90th percentiles for each of the 6 measurements were created. Cluster analyses identified 3 clusters of subjects based on their average z scores for these measures. The subjects with the best growth had fewest days of health care use and fewest days of social participation missed, and the subjects with the worst growth had the most days of health care use and most days of participation missed. Growth patterns in children with cerebral palsy were associated with their overall health and social participation. The role of these cerebral palsy-specific growth curves in clinical decision-making will require further study.
Article
https://link.springer.com/article/10.1007%2Fs00455-018-9943-2
Article
To update the British growth reference, anthropometric data for weight, height, body mass index (weight/height) and head circumference from 17 distinct surveys representative of England, Scotland and Wales (37,700 children, age range 23 weeks gestation to 23 years) were analysed by maximum penalized likelihood using the LMS method. This estimates the measurement centiles in terms of three age-sex-specific cubic spline curves: the L curve (Box–Cox power to remove skewness), M curve (median) and S curve (coefficient of variation). A two-stage fitting procedure was developed to model the age trends in median weight and height, and simulation was used to estimate confidence intervals for the fitted centiles. The reference converts measurements to standard deviation scores (SDS) that are very close to Normally distributed – the means, medians and skewness for the four measurements are effectively zero overall, with standard deviations very close to one and only slight evidence of positive kurtosis beyond ±2 SDS. The ability to express anthropometry as SDS greatly simplifies growth assessment. © 1998 John Wiley & Sons, Ltd.
Article
Although cerebral palsy (CP) is the most common cause of motor deficiency in young children, it occurs in only a to 3 per 1000 live births. In order to monitor prevalence rates, especially within subgroups (birthweight, clinical type), it is necessary to study large populations. A network of GP surveys and registers was formed in 14 centres in eight countries across Europe. Differences in prevalence rates of GP in the centres prior to any work on harmonization of data are reported. The subsequent process to standardize the definition of CP, inclusion/exclusion criteria, classification, and description of children with CP is outlined. The consensus that was reached on these issues will make it possible to monitor trends in CP rate, to provide a framework for collaborative research, and a basis for services planning among European countries.
Article
Edited by Peter B Sullivan. . Published by MacKeith Press, 2009, pp 144, £20 (soft cover). ISBN: 1898683603 If childhood disability is regarded as a Cinderella specialty, then feeding the child with a disability is likely to be the Mother of all Cinderellas. This book is, therefore, long overdue. Edited by Peter Sullivan, a gastroenterologist from Oxford, it aims to provide a framework for multidisciplinary assessment and management of feeding and nutritional problems in neurodisabled children. The eight UK-based contributors cover the full range of professionals in the multidisciplinary team. The focus is mainly …
Article
The aim of this study was to estimate the prevalence and severity of feeding and nutritional problems in children with neurological impairment within a defined geographical area. In a cross-sectional study, a validated questionnaire was sent to 377 parents of children (aged 4 to 13 years) on the Oxford Register of Early Childhood Impairments with oromotor dysfunction. The return rate was 72%. Of these, 93% had cerebral palsy; 47% were unable to walk; 78% had speech difficulty; and 28% continuous drooling of saliva. Gastrointestinal problems were commonly encountered: 59% were constipated; 22% had significant problems with vomiting, and 31% had suffered at least one chest infection in the previous 6 months. Feeding problems were prevalent: 89% needed help with feeding and 56% choked with food; 20% of parents described feeding as stressful and unenjoyable. Prolonged feeding times (3h/day) were reported by 28%. Only 8% of participants received caloric supplements and 8% were fed via gastrostomy tube. Even though 38% of respondents considered their child to be underweight, 64% of children had never had their feeding and nutrition assessed. The results highlight that feeding problems in children with neurological impairment are common and severe, causing parental concern. Many of these children would benefit from nutritional assessment and management as part of their overall care.
Article
The aim of this prospective cohort study was to evaluate the impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy (CP). Short-Form 36 version II was used to measure quality of life in carers of 57 Caucasian children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y 3mo) six and 12 months after insertion of a gastrostomy tube. Responses were calibrated against a normative dataset (Oxford Healthy Life Survey III). Six months after gastrostomy feeding was started, a substantial rise in mean domain scores for mental health, role limitations due to emotional problems, physical functioning, social functioning, and energy/vitality were observed. At 12 months after gastrostomy placement, carers reported significant improvements in social functioning, mental health, energy/vitality (mean increase >9.8 points; p<0.03), and in general health perception (mean increase 6.35 points; p=0.045) compared with results at baseline. Moreover, the values obtained for these domains at 12 months were not significantly different from the normal reference standard. Carers reported a significant reduction in feeding times, increased ease of drug administration, and reduced concern about their child's nutritional status. This study has demonstrated a significant, measurable improvement in the quality of life of carers after insertion of a gastrostomy feeding tube.
Article
To determine the percentiles of weight for age in cerebral palsy according to gender and Gross Motor Function Classification System (GMFCS) level and to identify weights associated with negative health outcomes. This study consists of a total of 102 163 measurements of weight from 25 545 children with cerebral palsy who were clients of the California Department of Developmental Services from 1988 through 2002. Percentiles were estimated using generalized additive models for location, scale, and shape. Numbers of comorbidities were compared using t tests. The effect of low weight on mortality was estimated with proportional hazards regression. Weight-for-age percentiles in children with cerebral palsy varied with gender and GMFCS level. Comorbidities were more common among those with weights below the 20th percentile in GMFCS levels I through IV and level V without feeding tubes (P < .01). For GMFCS levels I and II, weights below the 5th percentile were associated with a hazard ratio of 2.2 (95% confidence interval: 1.3-3.7). For children in GMFCS levels III through V, weights below the 20th percentile were associated with a mortality hazard ratio of 1.5 (95% confidence interval: 1.4-1.7). Children with cerebral palsy who have very low weights have more major medical conditions and are at increased risk of death. The weight-for-age charts presented here may assist in the early detection of nutritional issues or other health risks in these children.
Article
The aim was to estimate the prevalence of feeding and nutritional problems in children with cerebral palsy (CP) in Norway. Data were abstracted from the Norwegian CP Register for 661 (368 boys) children born 1996-2003 (mean age 6 years 7 months; SD: 1.5). For children born from 1999 to 2003, weight and height were available. Body mass index (BMI) (kg/m(2)) was used to assess nutritional status. One hundred and thirty-two (21%) children with CP were completely dependent on assistance during feeding. The prevalence of gastrostomy tube feeding was 14%. Longer duration of gastrostomy tube feeding was associated with higher weight and BMI, but not with height. Only 63% of the children with CP had normal BMI, 7% had grade 3 thinness, while the prevalence of overweight and obesity in our study was 16%. In all, 20% of the children had mean z-scores for weight and/or height below - 2 SD. Feeding problems in children with CP were common and associated with poor linear growth. A high proportion of the children were undernourished. Moreover, our results suggest that gastrostomy tube feeding may have been introduced too late in some children.
Article
The aims were to investigate survival of children with cerebral palsy (CP) and to search for modifiable factors that influence survival in CP. The total population of children with CP in southern Sweden born between 1990 and 2005, and followed from 1994 to 2010 comprised 718 children. The study included 708 of these children (297 females, 411 males) participating in a secondary prevention programme. CP subtype, Gross Motor Function Classification System (GMFCS) levels, and comorbidities were described. Kaplan-Meier survival curves were plotted. The following factors were investigated using Cox regression analysis: GMFCS level (co-varies with overall health), size of health care catchment area, gastrostomy feeding, and sex. The estimated survival at 19 years of age was 60% in children with the most severe gross motor limitations (GMFCS level V). Death occurred throughout childhood. All children at GMFCS level I or II, and 96% of the whole CP population, survived. The mortality risk in childhood CP was three times higher in catchment areas that covered small populations than in areas with a large population. Gastrostomy feeding was associated with a ninefold increased risk of dying, regardless of GMFCS level and catchment area. Fragile children with CP, as indicated by GMFCS level V and gastrostomy feeding, had the lowest chance of surviving childhood. Health care catchment area seemed to influence survival rate.
Article
Risk factors for mortality of young children with cerebral palsy were studied using a sample of 12,709 children aged 0.5-3.5 years with cerebral palsy who had received services from the State of California between 1980 and 1995. The most powerful prognostic factors for survival were simple functional items: mobility and feeding skills. Once these were known, factors such as severity of mental retardation and presence of quadriplegia contributed relatively little. Children with fair motor and eating skills had good survival prospects, with 90% or more reaching adulthood, but those without such skills had much poorer prospects. Among children who were unable to lift their heads, median survival time was 7 additional years for those who were tube fed (n = 557) and 14 years for those fed entirely by others (n = 997). Although a child's approximate survival chances can be assessed from such functional classifications, we indicate the manner in which additional information on the child's condition can be used to obtain more accurate survival data.
Article
Cerebral palsy is often accompanied by abnormalities of growth and nutrition; children with severe motor impairments are most at risk. Nutrition, neurological, and endocrine factors all contribute to suboptimal growth. Poor growth and nutrition are associated with poor general health outcomes and reduced levels of participation, and therefore warrant careful evaluation and appropriate intervention. The lack of normative data combined with the complex interaction of nutrition and nonnutrition factors contributing to growth in this population present real difficulties in management. Particular care is needed to avoid overfeeding and the resultant increase in fat mass and associated morbidity.
Article
To assess the quality of life (QOL) of neurologically impaired children before and after gastrostomy (G) and gastrojejunostomy (GJ) tube insertion. This was a prospective longitudinal study of children with severe neurological impairment who underwent G or GJ tube insertion. At baseline, and at 6 and 12 months after tube insertion, parents rated (1) global QOL and health-related quality of life (HRQOL) using 10 cm visual analogue scales, with 10 representing maximal QOL and (2) HR-QOL using a questionnaire-based measure. Fifty patients, 45 and five of whom underwent G and GJ tube insertion, respectively, were enrolled with a median age of 591 days. Forty-two had a static neurological disorder, and eight had a progressive neurological disorder. The mean weight for age z score increased significantly over time: -2.8 at baseline and -1.8 at 12 months. The mean QOL and HR-QOL scores at baseline were 5.5 and 5.6 out of 10, respectively. There was no significant change in these scores at 6 and 12 months post-tube insertion. Children with a progressive versus a static neurological disorder had a significantly lower QOL over time. Ease of medication administration as well as feeding showed a significant improvement in scores from baseline to 12 months. Parents felt that the G and GJ tube had a positive impact on their child's health at 6 months (86%) and 12 months (84%). QOL as rated by parents did not increase following insertion of a G or GJ tube in neurologically impaired children. However, parents felt that the tube had a positive impact on their child's health, particularly with regards to feeding and administration of medications.
Article
The growth charts currently used in Norway, are based on measurements from the 1970s and 80s. New data are available from the Bergen Growth Study collected in 2003 - 6. In 2006, WHO published international charts for 0-5 year-old children. New growth charts based on data from the Bergen Growth Study and the Medical Birth Registry of Norway are presented for children aged 0-19 years. These were compared with existing references and with the WHO curves. Norwegian children aged 0-4 years have length, height and weight measurements that are only marginally different from those in the Norwegian growth charts in current use. In older children there has been an increase in the 50-percentile for height up to 3.4 cm in boys and 2.5 cm in girls. For children older than four years, weight for height has increased, especially for the upper percentiles. The percentile lines in the new Norwegian reference are generally positioned above the WHO standard for weight at birth, and for length/height, weight and head circumference in the age group 6 months to 5 years. The secular trends in growth mirror the need for new charts. The fact that Norwegian children differ from the WHO standards may reflect population differences relating to environment or growth potential between the populations.
Article
To update the British growth reference, anthropometric data for weight, height, body mass index (weight/height2) and head circumference from 17 distinct surveys representative of England, Scotland and Wales (37,700 children, age range 23 weeks gestation to 23 years) were analysed by maximum penalized likelihood using the LMS method. This estimates the measurement centiles in terms of three age-sex-specific cubic spline curves: the L curve (Box-Cox power to remove skewness), M curve (median) and S curve (coefficient of variation). A two-stage fitting procedure was developed to model the age trends in median weight and height, and simulation was used to estimate confidence intervals for the fitted centiles. The reference converts measurements to standard deviation scores (SDS) that are very close to Normally distributed - the means, medians and skewness for the four measurements are effectively zero overall, with standard deviations very close to one and only slight evidence of positive kurtosis beyond+/-2 SDS. The ability to express anthropometry as SDS greatly simplifies growth assessment.
Article
To determine the predictors of mortality and find the life expectancies of adults with cerebral palsy (CP), data on 24,768 individuals aged 15 years and over who received services in California between January 1980 and December 1995 were analyzed. Multivariate statistical methods to identify mortality predictors, and actuarial methods to determine corresponding life expectancies were used. The key predictors were lack of basic functional skills: mobility and feeding. Adults lacking these skills had much reduced life expectancies, as short as 11 years for the worst functioning groups. By contrast, survival of high-functioning adults was close to that of the general population. The influence on survival of cognitive skills, type of CP, and other factors appears to be expressed largely through their effect on basic functioning. Life expectancies of adults of a given age can differ by 40 years or more, according to their functional level.
Article
The aim of this study was to estimate the prevalence and severity of feeding and nutritional problems in children with neurological impairment within a defined geographical area. In a cross-sectional study, a validated questionnaire was sent to 377 parents of children (aged 4 to 13 years) on the Oxford Register of Early Childhood Impairments with oromotor dysfunction. The return rate was 72%. Of these, 93% had cerebral palsy; 47% were unable to walk; 78% had speech difficulty; and 28% continuous drooling of saliva. Gastrointestinal problems were commonly encountered: 59% were constipated; 22% had significant problems with vomiting, and 31% had suffered at least one chest infection in the previous 6 months. Feeding problems were prevalent: 89% needed help with feeding and 56% choked with food; 20% of parents described feeding as stressful and unenjoyable. Prolonged feeding times (3h/day) were reported by 28%. Only 8% of participants received caloric supplements and 8% were fed via gastrostomy tube. Even though 38% of respondents considered their child to be underweight, 64% of children had never had their feeding and nutrition assessed. The results highlight that feeding problems in children with neurological impairment are common and severe, causing parental concern. Many of these children would benefit from nutritional assessment and management as part of their overall care.
Article
Growth retardation is common in children with cerebral palsy. This may in part be due to the cerebral injury, but insufficient nutrition may also play a role. The aim of the present study was to estimate the prevalence of feeding problems, growth retardation, underweight and overweight in children with cerebral palsy. Population-based study of children with cerebral palsy in two Norwegian counties. Information was obtained both from parents and from medical records. 154 children born between 1 January 1982 and 31 December 1996 were included in the study. 30% of the children had height below the 2.5th centile, 10% had weight for height below the 2.5th centile, and 7% were obese (weight above the 97.5th centile). 26% of the children had oral motor dysfunction and 33% were unable to self-feed. Although these problems were more prominent in children with severe forms of cerebral palsy, the results of the multivariate analyses suggested that lack of ability to self-feed was a significant independent risk factor for height growth retardation and underweight. Parents of 24 (15%) children reported that the family's quality of life was significantly impaired by the feeding problems of the child. Our results are consistent with previous hospital-based studies and suggest that assessment of nutrition and growth should receive particular attention in the rehabilitation of children with cerebral palsy, in particular if the child is unable to self-feed.
Article
The aim of this prospective cohort study was to evaluate the impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy (CP). Short-Form 36 version II was used to measure quality of life in carers of 57 Caucasian children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y 3mo) six and 12 months after insertion of a gastrostomy tube. Responses were calibrated against a normative dataset (Oxford Healthy Life Survey III). Six months after gastrostomy feeding was started, a substantial rise in mean domain scores for mental health, role limitations due to emotional problems, physical functioning, social functioning, and energy/vitality were observed. At 12 months after gastrostomy placement, carers reported significant improvements in social functioning, mental health, energy/vitality (mean increase >9.8 points;p<0.03), and in general health perception (mean increase 6.35 points;p=0.045) compared with results at baseline. Moreover, the values obtained for these domains at 12 months were not significantly different from the normal reference standard. Carers reported a significant reduction in feeding times, increased ease of drug administration, and reduced concern about their child's nutritional status. This study has demonstrated a significant, measurable improvement in the quality of life of carers after insertion of a gastrostomy feeding tube.
Article
We report a longitudinal, prospective, multicentre cohort study designed to measure the outcomes of gastrostomy tube feeding in children with cerebral palsy (CP). Fifty-seven children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y 3mo) were assessed before gastrostomy placement, and at 6 and 12 months afterwards. Three-quarters of the children enrolled (43 of 57) had spastic quadriplegia; other diagnoses included mixed CP (6 of 57), hemiplegia (3 of 57), undiagnosed severe neurological impairment (3 of 57), ataxia (1 of 57), and extrapyramidal disorder (1 of 57). Only 7 of 57 (12%) could sit independently, and only 3 of 57 (5%) could walk unaided. Outcome measures included growth/anthropometry, nutritional intake, general health, and complications of gastrostomy feeding. At baseline, half of the children were more than 38D below the average weight for their age and sex when compared with the standards for typically-developing children. Weight increased substantially over the study period; the median weight z score increased from -3 before gastrostomy placement to -2.2 at 6 months and -1.6 at 12 months. Almost all parents reported a significant improvement in their child's health after this intervention and a significant reduction in time spent feeding. Statistically significant and clinically important increases in weight gain and subcutaneous fat deposition were noted. Serious complications were rare, with no evidence of an increase in respiratory complications.
Article
Gastrostomy tube (GT) feeding in children with cerebral palsy (CP) is associated with significant increases in weight gain and, potentially, with overfeeding. This study aimed to measure energy balance and body composition in children with CP who were fed either orally or by GT. Forty children (27 males, 13 females; median age 8y 6mo; range 1y 4mo-18y 11mo) with spastic quadriplegic CP, of whom 22 were gastrostomy-fed and 18 orally-fed, underwent anthropometry, indirect calorimetry, and total energy expenditure determination (doubly-labelled water method). Total body water content (estimated by the 18O dilution method) was used to determine body composition. The Gross Motor Function Classification System (GMFCS) was used to determine the degree of motor impairment. GMFCS levels ranged from I to V; in the gastrostomy group 19 out of 22 were Level V and two out of 22 were Level IV. Within the orally-fed group, 11 out of 18 were Level V and four out of 18 were Level IV. Resting metabolic rate and total energy expenditure of the gastrostomy-fed children were lower but they had a significantly larger triceps skinfold thickness (p=0.01) and fat mass index (p=0.02) than the orally-fed children. Both groups had consistently higher body-fat content and lower fat-free (i.e. muscle and bone) content than the reference population of age- and sex-matched children without disabilities. This study has demonstrated the relatively low energy expenditure and high body-fat content of children with severe CP and highlighted the potential risk of overfeeding with available enteral feeds administered via GT.
Article
To describe growth and nutrition in nonambulatory youth (<19 years of age) with cerebral palsy (CP) living in residential centers compared with similar youth living at home. A multicenter, cross-sectional, single observational assessment of 75 subjects living in a residential care facility compared with 205 subjects living at home. Primary outcome measures included anthropometric measures of height, weight, triceps, and subscapular skinfolds, and mid-upper-arm muscle area. Z scores were calculated from reference values for healthy children. Age, use of a feeding tube, and Gross Motor Functional Classification System (GMFCS) level were included as important confounders. Use of a feeding tube was associated with higher skinfold Z scores, and a significantly higher percentage of the residential subjects had a feeding tube. Height, weight, and arm-muscle area Z scores all diverged (negatively) from reference values with age, and the residential subjects were on average older than the home-living subjects. After controlling for age, GMFCS level and use of a feeding tube, residential living was associated with significantly greater weight, height, skinfold thicknesses, and mid-arm muscle area Z scores. Poor growth and nutrition in children with CP is a prevalent, important, and complex problem. Although factors intrinsic to the condition of CP likely play a significant role, it is also clear that environmental factors, including the living situation of the child, can have an impact.
Article
Enteral feeding is ideal for children with low caloric intake. It can be provided through different methods, including nasogastric, nasojejunal, gastrostomy, or gastrojejunostomy tubes. To assess growth outcomes of pediatric patients following retrograde percutaneous gastrostomy (RPG) and compare complications with those following other gastrostomy methods. We retrospectively reviewed 120 random RPG patients from 2002 to 2003 (mean follow-up, 2.7 years). Patient weights and growth percentiles were recorded at insertion, and at 0-5 months, 6-12 months, and 18-24 months after insertion, and then compared using a Student's t-test. Complications and tube maintenance issues (TMIs) were recorded. Gastrostomy tube insertion was successful in all 120 patients (59 boys, 61 girls; mean age 4.3 years). The most common underlying diagnosis was neurologic disease (29%, 35/120) and the main indication was inadequate caloric intake (24%, 29/120). Significant increases in growth percentile for the entire population were demonstrated between insertion and 0-5 months (18.7-25.3; P<0.001) and between insertion and 18-24 months (18.7-25.8; P<0.001). In boys and girls significant growth increases occurred between insertion and 0-5 months (boys P=0.004; girls P=0.01). There were 11 major postprocedural complications, 100 minor complications and 169 TMIs. RPG provides long-term enteral nutrition in the pediatric population and increases growth significantly 6 and 24 months after insertion. Minor complications and TMIs are frequent.
Validation of assessment scales for communication and oro-motor function in children with cerebral palsy
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