5
FEEDING METHOD AND HEALTH OUTCOMES OF CHILDREN WITH CEREBRAL PALSY BRIAN ROGERS, MD Disorders of feeding and swallowing are common in children with cerebral palsy. Feeding and swallowing disorders have significant implications for development, growth and nutrition, respiratory health, gastrointestinal function, parent–child interaction, and overall family life. Assessments need to be comprehensive in scope and centered around the medical home. Oral feeding interventions for children with cerebral palsy may be effective in promoting oral motor function, but have not been shown to be effective in promoting feeding efficiency or weight gain. Feeding gastrostomy tubes are a reasonable alternative for children with severe feeding and swallowing problems who have had poor weight gain. (J Pediatr 2004;145:S28-S32) F eeding is a common developmental and health challenge of children and adolescents with cerebral palsy. Any or all levels of the feeding process including gathering, preparation, ingestion, swallowing, and digestion may be involved. These difficulties often result in stressful mealtimes and may have significant health and social implications for children and their families. 1 Children with cerebral palsy and feeding problems often require thoughtful, creative, comprehensive, and longitudinal care that addresses general health, neurodevelopmental status, caregiver–child interaction, and family function. This care is dependent on the active involvement of well-trained primary care providers and pediatric subspecialists. This article addresses the nature and prevalence of feeding problems in children with cerebral palsy. The health, safety, personal, family, and cultural issues in the development of feeding programs are emphasized. Finally, an evidence-based review of feeding treatments including oral sensorimotor treatment and feeding gastrostomy tubes (GTs) is presented. PREVALENCE AND NATURE OF FEEDING PROBLEMS There is increasing recognition of the range and significance of feeding disorders in childhood. 2 In spite of this, there is a paucity of information concerning the development of feeding efficiency and the prevalence of feeding impairments in the general population and in children with cerebral palsy. 3-11 Prevalence studies have been limited by the lack of a standardized definition of feeding impairment. Parent or caregiver interviews have been used to describe feeding behavior in certain risk populations, including children with cerebral palsy. 6-9 Stallings et al 6,7 surveyed the occurrence of feedings problems as reported by parent and caregivers in a population of children with cerebral palsy referred to three tertiary care medical centers. Feeding problems were reported in 86% of children with quadriplegia and 37% of those with diplegia or hemiplegia. The North American Growth in Cerebral Palsy Project is a larger population- based study that evaluated the growth and nutritional status of 230 children with moderate to severe cerebral palsy who resided in six geographical areas of the United States and Canada. 9 The majority (58%) of the children had reported feeding problems, including 35% with mild/moderate feeding impairment and 23% with severe feeding problems. The Oxford Feeding Study involved 440 children with cerebral palsy and feeding problems who resided in four counties of the United Kingdom. 8 A graded questionnaire revealed that 89% of the children needed assistance with feedings, and there were concerns regarding oral feedings such as frequent choking (56%), stressful and prolonged feedings (43%), and vomiting (22%). Children with more extensive motor involvement are more likely to have From the Department of Pediatrics, Division of Developmental Pediatrics, Oregon Health and Science Univer- sity, Portland, Oregon. I do not have any affiliations, financial agreements, or other involvements that figure prominently in the sub- mitted manuscript. Submitted for publication Mar 2, 2004; accepted May 11, 2004. Reprint requests: Brian Rogers, MD, Oregon Health and Science Univer- sity, Child Development and Rehabil- itation Center, PO Box 574, Portland, OR 97207-0574. E-mail: rogersbr@ ohsu.edu. 0022-3476/$ - see front matter Copyright Ó 2004 Elsevier Inc. All rights reserved. 10.1016/j.jpeds.2004.05.019 GER Gastroesophageal reflux GT Gastrostomy tube S28

Feeding method and health outcomes of children with cerebral palsy

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Page 1: Feeding method and health outcomes of children with cerebral palsy

FEEDING METHOD AND HEALTH OUTCOMES OF CHILDREN WITH

CEREBRAL PALSY

BRIAN ROGERS, MD

Disorders of feeding and swallowing are common in children with cerebral palsy. Feeding and swallowing disorders have

significant implications for development, growth and nutrition, respiratory health, gastrointestinal function, parent–child

interaction, and overall family life. Assessments need to be comprehensive in scope and centered around the medical home. Oral

feeding interventions for children with cerebral palsy may be effective in promoting oral motor function, but have not been

shown to be effective in promoting feeding efficiency or weight gain. Feeding gastrostomy tubes are a reasonable alternative for

children with severe feeding and swallowing problems who have had poor weight gain. (J Pediatr 2004;145:S28-S32)

Feeding is a common developmental and health challenge of children and adolescents with cerebral palsy. Any or all levels ofthe feeding process including gathering, preparation, ingestion, swallowing, and digestion may be involved. Thesedifficulties often result in stressful mealtimes and may have significant health and social implications for children and their

families.1

Children with cerebral palsy and feeding problems often require thoughtful, creative, comprehensive, and longitudinal carethat addresses general health, neurodevelopmental status, caregiver–child interaction, and family function. This care is dependenton the active involvement of well-trained primary care providers and pediatric subspecialists.

This article addresses the nature and prevalence of feeding problems in children with cerebral palsy. The health, safety,personal, family, and cultural issues in the development of feeding programs are emphasized. Finally, an evidence-based review offeeding treatments including oral sensorimotor treatment and feeding gastrostomy tubes (GTs) is presented.

PREVALENCE AND NATURE OF FEEDING PROBLEMSThere is increasing recognition of the range and significance of feeding disorders in childhood.2 In spite of this, there is

a paucity of information concerning the development of feeding efficiency and the prevalence of feeding impairments in thegeneral population and in children with cerebral palsy.3-11 Prevalence studies have been limited by the lack of a standardizeddefinition of feeding impairment.

Parent or caregiver interviews have been used to describe feeding behavior in certainrisk populations, including children with cerebral palsy.6-9 Stallings et al6,7 surveyed theoccurrence of feedings problems as reported by parent and caregivers in a population ofchildren with cerebral palsy referred to three tertiary caremedical centers. Feeding problemswere reported in 86% of children with quadriplegia and 37% of those with diplegia orhemiplegia. The North American Growth in Cerebral Palsy Project is a larger population-based study that evaluated the growth and nutritional status of 230 children with moderateto severe cerebral palsy who resided in six geographical areas of the United States andCanada.9 Themajority (58%) of the children had reported feeding problems, including 35%with mild/moderate feeding impairment and 23% with severe feeding problems. TheOxford Feeding Study involved 440 children with cerebral palsy and feeding problems whoresided in four counties of the United Kingdom.8 A graded questionnaire revealed that 89%of the children needed assistance with feedings, and there were concerns regarding oralfeedings such as frequent choking (56%), stressful and prolonged feedings (43%), andvomiting (22%). Children with more extensive motor involvement are more likely to have

From the Department of Pediatrics,Division of Developmental Pediatrics,Oregon Health and Science Univer-sity, Portland, Oregon.I do not have any affiliations, financialagreements, or other involvementsthat figure prominently in the sub-mitted manuscript.Submitted for publication Mar 2, 2004;accepted May 11, 2004.

Reprint requests: Brian Rogers, MD,Oregon Health and Science Univer-sity, Child Development and Rehabil-itation Center, PO Box 574, Portland,OR 97207-0574. E-mail: [email protected]/$ - see front matter

Copyright� 2004 Elsevier Inc. All rightsreserved.

10.1016/j.jpeds.2004.05.019GER Gastroesophageal reflux GT Gastrostomy tube

S28

Page 2: Feeding method and health outcomes of children with cerebral palsy

difficulties with feeding and swallowing, undernutrition, andrespiratory illnesses, and to spend more time in bed.8,9

Home visits to 49 children with moderate to severecerebral palsy who resided in two health districts inEngland10,11 included the screening version of the Schedulefor Oral Motor Assessment and developmental and physicalexaminations along with a standardized assessment of oralmotor function. There was a 92% prevalence of dysphagia.The reported mean duration of feedings was 28 minutes, butthe mean observed feeding duration was 19 minutes.Interestingly, children with more severe oral motor dysfunc-tion had significantly shorter observed duration of feedings.These observations suggest that mealtimes for children withsevere oral motor dysfunction may in reality be shorter thanperceived by caretakers, and that time taken for oral feedingsmay be an important factor in achieving desirable caloricintakes for children with significant oral motor dysfunction.

The videofluoroscopic swallow study provides dynamicimages of the oral, pharyngeal, and esophageal phases ofdeglutition. It is most helpful in assessing pharyngeal motilityand airway protection during swallowing. Videofluoroscopicswallow study has proven to be a valuable assessment tool forchildren with cerebral palsy.12-14 Commonly observed pharyn-geal phase abnormalities include swallow delay, food residueafter swallows, pharyngeal dysmotility, and aspiration. Theseabnormalities are usually restricted to specific food textures.13

Aspiration more commonly occurs with thin liquids and isusually silent and not associated with coughing or choking.

HEALTH AND SOCIAL CONSIDERATIONSFeeding problems and dysphagia may affect the life

expectancy of children and adults with cerebral palsy. TheWestern Australian Cerebral Palsy Register included allpersons (N = 2014) with cerebral palsy who were born inWestern Australia from 1956 to 1994.15 All study subjectswere classified according to type of cerebral palsy: spastic formssuch as hemiplegia (35%), diplegia (28%), and quadriplegia(17%), and nonspastic forms (15%). A total of 225 personsdied during the study period, and mortality was very high untilthe age of 15 years. The overwhelming cause of death for allage ranges was respiratory disease (59%). Most persons withcerebral palsy survive to adulthood, with longevity most closelylinked to intellectual deficit.

In a study of 12,709 children age 0.5 to 3.5 years withmoderate to severe cerebral palsy,16 feeding and mobility skillswere the most powerful prognostic factors for survival. Thehighest mortality rates were for those children who could notlift their chest or head in the prone position, especiallychildren who were solely tube fed or children who were totallydependent on caregivers for oral feedings.

Feeding or swallowing problems may initially present asupper or lower respiratory tract signs or symptoms.17

Conversely, respiratory disorders may result in difficultieswith feeding and swallowing. These observations emphasizethe close anatomic and functional relationship between therespiratory and upper gastrointestinal tracts. Common

Feeding Method and Health Outcomes of Children withCerebral Palsy

anatomic airway abnormalities observed in children withcerebral palsy include hypotonia of the hypopharynx,supraglottic edema associated with gastroesophageal reflux(extraesophageal reflux disease), and tracheobronchomalacia.Common acute respiratory symptoms during oral feedingsinclude apnea, hypopnea, tachypnea, coughing, choking, andhypoxemia.18,19 Aspiration of food either with swallowing orafter more commonly results in chronic lung disease (recurrentwheezing, bronchitis, atelectasis, and need for supplementaloxygen) rather than acute aspiration pneumonia.

Gastroesophageal reflux (GER) is believed to be quitecommon in children with cerebral palsy, although its trueprevalence remains unknown. Investigations using esophagealpH studies and upper gastrointestinal endoscopy have revealedGER rates of 70% to 90% in children with cerebral palsy whopresent with failure to thrive, food refusal, small volume feeds,and vomiting.20-22 The diagnosis of GER requires a carefulhealth and feeding history, physical examination, andobservation of oral feedings.

Children with cerebral palsy are at high risk for growthfailure. Studies of the growth of school-aged children thathave consistently documented both weights and lengths belowpercentile 2.5 to 10 for age and sex6,7,23-25 have mostlyreferenced medical center referral populations. The NorthAmerican Growth in Cerebral Palsy Project identifiedchildren with cerebral palsy between the ages of 2 and 18years from a geographic population of 3 million. The GrossMotor Function Classification System was used to identifya cohort of children (N = 235) with moderate to severecerebral palsy (Gross Motor Function Classification SystemIII-V), of whom 47% had weights ,5th percentile and 68%had lengths less than percentile 2.5 for age and sex.25

Both nutritional and nonnutritional factors playimportant roles in the growth of children with cerebral palsy.Nonnutritional factors including negative neurotrophiceffects and indirect factors such as immobility, lack of weightbearing, or endocrinological abnormalities have a significanteffect on segmental lengths, limb circumferences, and jointbreadths.26 Other nonnutritional factors including jointcontractures and scoliosis prevent the accurate recording oflinear growth. Upper arm, tibial length, and knee height haveall been found to be reliable, valid proxies for stature inchildren with cerebral palsy.27,28 Nutritional factors are alsovery important for growth. Measures of fat stores includingskinfold thickness (biceps, triceps, suprailiac, and sub-scapular) have proved useful in assessing nutritional statusof children with cerebral palsy.6,7,9 A study of children from 2to 18 years of age with moderate to severe cerebral palsydemonstrated that 38% of the cohort had significantlyreduced fat stores and that standard weight for height ratioswere poor indices for reduced fat stores.29 Percent body fat(calculated from four skinfold measurements) and musclearea (calculated from upper arm circumference and tricepsskinfold) and oral motor function are important factors forweight gain and linear growth of children with cerebralpalsy.6,7 In a study of the growth patterns of young infantswith cerebral palsy, the majority of infants who developed

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Page 3: Feeding method and health outcomes of children with cerebral palsy

Table I. Considerations for oral feeding of children with cerebral palsy

1. Dysphagia is more common in children with severe motor impairment2. Aspiration is a common complication of dysphagia and is usually silent3. Feeding history is important but often misleading4. Feeding interruptions, duration of individual feedings, and consumed food textures are useful historical estimates of feeding efficiency5. Observation of oral feedings is important6. Weight gain is a good measure of oral feeding efficiency7. Even though oral feedings may be difficult, they are important to children and families8. Malnutrition usually presents in early infancy and is rarely resolved by continued oral feedings9. Chronic lung disease is the most common sequela of aspiration10. Gastroesophageal reflux is very common and can complicate oral feeding, appetite, growth, and respiratory status

growth failure had signs of undernutrition as defined byWaterlow classification.24 Nutritional status has a greaterinfluence on the linear growth of children with cerebral palsyduring the preschool years.6,7

The basis of the relation between feeding dysfunction–reduced fat stores and growth failure remains somewhatunclear. Little is known regarding the food intake of childrenwith cerebral palsy except that reported mealtimes are oftenshorter than observed and reported 3-day dietary intakes areoften grossly overestimated by caregivers.11,30 In addition topotential reduction of food intake, spasticity has been thoughtto be a source of excessive caloric consumption. Recent studiesof children with severe spastic or extrapyramidal cerebral palsy,however, have revealed that resting energy expenditure byindirect calorimetry and total energy expenditure by doublelabeled water method are not excessive and far less than that ofunaffected children.30-32

Developmental status and feeding methods are impor-tant factors in the general health status of children withmoderate to severe cerebral palsy. The use of feeding tubes andgreater degrees of motor and cognitive impairments areindependently and negatively associated with measures ofglobal health.33 It remains unclear whether this reduced healthstatus reflects the degree of feeding and swallowing impair-ment or complications resulting from the use of feeding GTs.

The health implications of feeding and swallowingdisorders can be meaningfully interpreted only in the contextof each child’s family. Usually parents report that feedingproblems are evident in the first months of life, with feedingsoften being described as prolonged and stressful. It is importantto recognize that parents may simultaneously view feedings asnot only stressful but also a very special time that they have withtheir child.34 These opportunities between children and theirparents for shared communication, enjoyment, and nurturingare very important and should not be overlooked in developingfeeding programs. Professionals should encourage parents tofeel that they are part of the solution for their child’s feedingchallenges rather than the cause.

FEEDING METHODS: EVIDENCE-BASEDREVIEW

There is increasing evidence that the method of feedingis an important factor in the growth outcomes of children with

S30 Rogers

more severe cerebral palsy. In one study, growth outcomes of133 children with severe cerebral palsy and dysphagia wereassessed over approximately a 6-year period.35 The cohortconsisted of 66 children who had feeding GTs. All of thechildren without feeding GTs received oral motor stimulation,and 90% received high-caloric food supplements. Over thestudy period, mean weight age z scores and weight for heightratio z scores were significantly greater in the group withfeeding GTs. There was also a notable trend toward increasedlinear growth of children with feeding GTs. The incidence ofgrowth failure (weight age z score , –2) at the end of thestudy was significantly greater in children receiving only oralfeeds. These data suggest that children with severe cerebralpalsy who are fed orally have slower weight gain and havea higher prevalence of growth failure compared with thosereceiving GT feedings.

Oral sensorimotor management is the most commontherapeutic intervention for children with dysphagia.36 Suchprograms can have a broad range of goals including co-ordinated movements of the mouth, respiratory and phonatorysystems for communication, improved coordination of oralmotor movements to enhance feeding skills, promotion ofnormal sensory oral experiences during mealtime, andimprovement of whole-body sensory processing.36 Efficacystudies have been limited. Ottenbacher et al37,38 demonstratedno change in oral motor function or weight gain during 9weeks of sensorimotor treatment in children with severeneurological impairments. Two intervention trials for theefficacy of sensorimotor treatment involved 25 and 35 children(2.5-13 years) with moderate to severe cerebral palsy andundernutrition.39-42 Two subjects were randomized to 5 to 7minutes of oral sensorimotor treatment 5 days per week for 10to 20 weeks, to chewing treatment, or to a control group. Oralsensorimotor treatment resulted in significant improvementsin chewing, tongue lateralization, lip closure, swallowing, andspoon feeding, but not drinking. There was no change inmealtime duration or improvement in nutritional statusduring the oral sensorimotor intervention. Thus, oralsensorimotor therapy may be effective in promoting oralmotor function but has not been shown to be effective inpromoting oral feeding efficiency, caloric intake, weight gain,or pharyngeal motility and airway protection during feedings(Table I).

The Journal of Pediatrics � August 2004

Page 4: Feeding method and health outcomes of children with cerebral palsy

Table II. Considerations for GT feedings of children with cerebral palsy

1. Common indications for GTs include malnutrition, limited fluid or medication intake, airway compromise, and respiratory complicationsof aspiration

2. Much care should be given to explaining the indications and potential benefits of a feeding GT to parents or caregivers3. The procedure for placement of a feeding GT should be individualized and based on the health and needs of the child4. It is generally a safe procedure; common minor complications are easily managed5. Fundoplication procedures have higher rates of complications, including disturbances of gastric motility6. Postoperative nutritional and oral feeding (if indicated) management is important7. Most children can safely enjoy oral feedings or tastes in conjunction with GT feedings8. The needs of children and their families should be considered in selecting GT feeding schedules9. GT feedings are an effective means of improving the nutritional status of children with cerebral palsy10. Long-term follow-up of children with feeding GTs is very important.

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Gastrostomy tube feeding remains an important alter-ative nutritional source for children with cerebral palsy.ndications for a feeding GT include dysphagia resulting inndernutrition, aspiration with associated respiratory disease,nsufficient fluid intake and/or refusal of oral medications, andxcessive effort or stress during oral feedings. These relativendications need to be viewed in the context of the cultural,ocial, and religious belief systems of each child’s family.others often express a feeling of culpability for their child’soor growth and the need for surgery as a failure. Theedicalization of feeding through the use of tubes seemed toave a negative effect on social aspects of mealtimes in whichTs were viewed as ‘‘just another problem on top ofverything else.’’ They expressed concerns regarding de-endency, permanence, and safety. Information that parentsound useful in considering a feeding GT included perceivedenefits, their child’s growth potential, details regarding therocedure, and the effect on everyday life33 (Table II).

The primary methods for feeding GT placement arehe Stamm technique and the percutaneous endoscopicastrostomy.43,44 Perioperative mortality rates are generallyow (0% to 1%), and major and minor postoperative compli-ation rates are 10% to 30%. Common minor complicationsnclude leakage from the stoma, cellulitis, and excessiveranulation tissue formation. Fundoplication procedures forastroesophageal reflux are associated with higher rates ofostoperative complications including persistent retching.atient selection and preoperative medical care can signifi-antly influence perioperative and postoperative complicationates.43,44 Nutritional status, airway and respiratory function,pilepsy status, and gastrointestinal function need to bevaluated before GT placement. Discharge planning shouldnclude management of GT feedings to insure appropriateeight gain and promotion of oral sensorimotor development.

Family surveys after GT placement generally reveal highates (55% to 95%) of self-limited tube-related problems.arents are usually highly satisfied after the procedure (80% to0%), and with children having 50% to 60% fewer chestnfections, 90% less vomiting, and a majority of oral intakemproved or unchanged.45-47

Gastrostomy tube nutritional outcomes of feeding GTsave usually beenmeasured in children with more severe forms

eeding Method and Health Outcomes of Children witherebral Palsy

of cerebral palsy with a broad range of causes.48-51 Studysubjects have generally been malnourished before GT place-ment, and postoperative follow-up has been relatively short(6-24 months). Primary outcome measures have typically beenweights and lengths, although triceps skinfold measurementswere used in one study. Overall, GT feedings have resulted insignificant improvements in weight gain, weight for heightratios, and triceps skinfoldmeasures. Enteral feedings have alsoresulted in significant improvements in linear growth in somechildren. When enteral feedings are initiated early in life,weight and growth outcomes are enhanced.51

CONCLUSIONSChildren with cerebral palsy are at high risk for feeding

and swallowing disorders that can have significant healthimplications, including limited caloric intake and acute andchronic malnutrition. Successful management depends oncoordinated longitudinal care provided by primary carephysicians and pediatric specialists. Oral sensorimotor therapymay be effective in promoting oral motor function but has notbeen found to be effective in promoting oral feeding efficiency,pharyngeal phase function, caloric intake, and weight gain.Short-term follow-up studies have revealed that GTs area reasonably safe and effectivemeans of treating undernutritionand growth failure in children with cerebral palsy anddysphagia. Feeding GTs should be considered in childrenwith feeding and swallowing problems resulting in malnutri-tion, moderate to severe aspiration associated with respiratorycomplications, and children who have persistent significantdistress during oral feedings. A broader range of oral feedinginterventions should be investigated, and longer-term outcomestudies are needed for the evaluation of GT interventions.

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