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doi:10.1111/jpc.12763
VIEWPOINT
Tube feeding: Stopping more difficult than starting David Forbes1,2 and Zubin Grover1 1 Department of Gastroenterology, Princess Margaret Hospital for Children and 2School of Paediatrics & Child Health, University of Western Australia, Perth, Western Australia, Australia
Key words:
Australia; feeding behaviour; tube feeding.
Nutritional support using feeding tubes (nasogastric, gastrostomy or jejunostomy tubes) has facilitated survival and transition to out-of-hospital care for large numbers of children over the past three decades, with improved growth and quality of life, including transition to school.1 Patient age has progressively decreased, and the range of indications has increased.1 Nutrition support changed from being part of end-of-life support for individuals with terminal illness to part of a longterm treatment package.2 Despite widespread use of this technology, there are comparatively few assessments of long-term outcomes of tube feeding in children. This reflects the heterogeneous problems for which home enteral nutrition (HEN) is implemented, as well as the difficulties of monitoring large numbers of technologydependent children, cared for by all paediatric subspecialties. There were early indications that non-medical complications accompanied the use of HEN techniques in young children and that these were not always rated by health professionals as significantly as they were by families.3 Principal among these concerns has been the potential for ‘tube dependency’, and a long-term reluctance to eat and drink, often referred to as ‘oral aversion’. The prevalence of tube dependency in cohorts of children utilising HEN is uncertain. Benoit et al. could only confirm cessation of tube feeding in 21% of a Canadian cohort, and Daveluy et al. reported that less than 50% of long-term survivors successfully discontinued use of HEN.1,4 These children may demonstrate extremely challenging feeding behaviour, which can include absence of sucking, withdrawal from offered food, tongue chewing, gagging or extreme oromotor hypersensitivity with intolerance of sight or smell of food close to the mouth. Insufficient training of professionals in recognising, assessing and managing problematic feeding behaviour contributes to unnecessary parental anxiety as many start to doubt their ability to nurture. Knowledge of risk factors for feeding aversion has increased through the work of Rommel et al. who categorised feeding difficulties in a large clinical cohort of 700 Belgian children. Although this cohort was not exclusively children with tube dependency, it provides valuable insights into risk factors and Correspondence: Professor David Forbes, School of Paediatrics & Child Health, University of Western Australia, GPO Box D184, Perth, WA 6840, Australia. Fax: +61 893882097; email: [email protected] Conflict of interest: The authors have no conflicts of interest to declare. Accepted for publication 12 September 2014.
processes in the development of tube dependency. Feeding problems were classified in different groupings as primarily medical, oral problem or behavioural.5 Six hundred and three of the 700 children had a specific medical problem associated with their feeding difficulty: 42% of these an isolated gastrointestinal problem (most commonly gastro-oesophageal reflux); another 12% had a gastrointestinal problem in combination with other system disabilities, with neurologic disease, either alone or in combination with gastrointestinal disease, the next biggest contributor to this population. There were 427 children (61%) with an oral sensory or motor problem and 127 (18%) with a behavioural problem. Children in the first 2 years of life were more likely to have oral problems, while children with persistent feeding difficulties were more likely to have a medical or behavioural problem. Further analysis identified that gastrointestinal problems were more likely to be associated with oral feeding problems, neurologic problems with pharyngeal dysphagia and oral motor problems. Oral sensory problems were experienced by children with gastrointestinal and cardiac disease. Younger gestational age at birth was associated with oral-based feeding problems and higher gestational age with behavioural problems. Delay in introduction of feeding experience has been identified as a risk factor.5 Families of children with oral aversion are grateful that their child has survived early life-threatening illness and demonstrated an improved growth trajectory. However, most are desperate to move onto a more normalised eating behaviour, seeking help where they can find it or pursuing treatment in various parts of the world, either self-funded or via community or government support. Medical responses to this problem have been comparatively slow in many parts of the world, including Australia. Reports from several discipline areas and various parts of the world, including reports in this journal, now give this problem due emphasis. Appropriate problem recognition is an important first step, and in this issue of this journal, Marshall et al. document the validity of the The Behavioral Pediatrics Feeding Assessment Scale (BPFAS), a parent-completed tool for identifying feeding difficulties and for defining clinically significant feeding problems in an Australian setting.6 The high specificity of the BPFAS suggests that this tool can be used by non-specialists, with any children scoring above the recommended cut-offs for this tool being referred on for further evaluation and management. In another recent report in this journal, Gardiner et al. described the current status of tube-weaning programmes in
Journal of Paediatrics and Child Health 51 (2015) 245–247 © 2014 The Authors Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians).
245
Tube-weaning programmes
D Forbes and Z Grover
Australia, highlighting the lack of clinical practice guidelines and poor programme leadership across the country.7 International groups have now documented successful programmes utilising different approaches to tube dependency in different settings, which reflect evolution in our understanding and which have gone a long way to demystifying the challenge of tube dependency.4,8–13 Several elements are common to these programs. They all use multidisciplinary teams and multimodal assessment. All teams use paediatricians and mental health professionals, most use dieticians, and then there are various combinations of other health professionals including nurses, speech pathologists, occupational therapists and physiotherapists.4,8–13 All programmes have used induction of hunger to provoke oral feeding behaviour as the first step in tube weaning. This step needs supervision and monitoring to ensure that health is not compromised and that infant and parents are supported through a stressful period. Weight loss of 10–15% of body weight is reported.9 The mental health and behavioural component of the programme is key to success. Benoit et al. demonstrated early, in what remains the only randomised controlled trial, that weaning could not be achieved with nutritional manipulation alone, but behavioural intervention and support are necessary to achieve adequate oral intake.4 This is now undertaken in various manners, ranging form the ‘play picnic’ described by Trabi et al. to the videoed meal times reported by Silverman et al.10,11 The aims of these interventions are to educate and support the primary carers and to extinguish the behavioural responses that maintain tube dependency. The different reports noted here indicate that the process is more important than the setting. Inpatient and outpatient programmes and combinations of these have all reported success in achieving tube weaning and establishing oral intake. The recent report by Marinschek et al. is the latest report by the Austrian group from Graz, documenting a successful online tube weaning programme.14 This and the publication by Wilken et al. of a home-based programme utilising local paediatric resources and external mental health skills both reported around 90% success and demonstrate that it is not essential for families to travel to get access to special skills to achieve successful management of tube dependency.12,14 Most large centres in Australia have an appropriate range of resources that will enable successful treatment of tube dependency, either with a specialised team or with input from ad hoc teams that bring together expertise and commitment. The report by Gardiner et al. suggests that recognising local strengths and developing a practice guideline that results in consistent approaches will be important.7 Prevention of tube dependency in high-risk infants and children remains our next challenge. Infants with significant gastrooesophageal reflux, those requiring frequent oropharyngeal stimulation from suctioning or intubation and those with congenital anomalies or severe respiratory disease that limits the introduction of oral feedings are all at high risk of feeding aversion and tube dependency. A group from Columbus, Ohio has outlined their approach to preventing long-term tube dependency in high-risk infants.15 Their strategy involves understanding the physiology of the neonatal aero-digestive tract, using pharyngo-oesophageal video fluoroscopy and 246
manometry studies to determine the status of peristaltic and sphincter functions, and then developing individualised feeding plans within the neonatal intensive care unit that do not exceed the physiological capabilities of the infant. Attempts are made to avoid dependence upon continuous feeding, in order to provoke hunger, using oral bolus feeds alone or in combination with continuous feeds. Cue-based feeding approaches are utilised together with non-nutritive sucking, stimulation of taste sensation with sucrose on a pacifier/dummy, posturing to facilitate feeding and frequent pauses in feeding. They have documented higher rates of oral feeding at discharge and a reduced economic burden.15 While all the technology underpinning this approach may not be widely available, the simple approaches to feeding are available to all paediatric services and should be considered in improving outcomes for high-risk infants. The tale of tube dependency has lessons for paediatricians. Life-saving techniques were implemented widely, without adequate monitoring of their full impact. When problems started to become apparent, paediatricians did not listen to parents and only slowly developed strategies to deal with them. Although we are now seeing reports of successful management of tube dependency, there is still only one randomised controlled trial to guide us in this area.4 The challenge now is to use science, listen to families and integrate care across disciplines to prevent problems as well as to manage them in a cost-effective manner.
References 1 Daveluy W, Guimber D, Uhlen S et al. Dramatic changes in home-based enteral nutrition practices in children during an 11-year period. J. Pediatr. Gastroenterol. Nutr. 2006; 43: 240–4. 2 Howard L, Heaphey L, Timchalk M. A review of the current national status of home parenteral and enteral nutrition from the provider and consumer perspective. J. Pediatr. Gastroenterol. Nutr. 1986; 10: 416–24. 3 Michaelis C, Warzak W, Stanek K, Van Riper C. Parental and professional perceptions of problems associated with long-term pediatric home tube feeding. J. Am. Diet. Assoc. 1992; 92: 1235–8. 4 Benoit D, Wang EE, Zlotkin SH. Discontinuation of enterostomy tube feeding by behavioral treatment in early childhood: a randomized controlled trial. J. Pediatr. 2000; 137: 498–503. 5 Rommel N, De Meyer AM, Feenstra L, Veereman-Wauters G. The complexity of feeding problems in 700 infants and young children presenting to a tertiary care institution. J. Pediatr. Gastroenterol. Nutr. 2003; 37: 75–84. 6 Marshall J, Raatz M, Ward E, Dodrill P. The use of parent report to screen for feeding difficulties in young children. J. Paediatr. Child Health 2015; 51. doi: 10.1111/jpc.12729 7 Gardiner AY, Fuller DG, Vuillermin PJ. Tube-weaning infants and children: a survey of Australian and international practice. J. Paediatr. Child Health 2014; 50: 626–31. 8 Byars KC, Burklow KA, Ferguson K, O’Flaherty T, Santoro K, Kaul A. A multicomponent behavioral program for oral aversion in children dependent on gastrostomy feedings. J. Pediatr. Gastroenterol. Nutr. 2003; 37: 473–80. 9 Kindermann A, Kneepkens CM, Stok A, van Dijk EM, Engels M, Douwes AC. Discontinuation of tube feeding in young children by hunger provocation. J. Pediatr. Gastroenterol. Nutr. 2008; 47: 87–91. 10 Silverman AH, Kirby M, Clifford LM et al. Nutritional and psychosocial outcomes of gastrostomy tube-dependent children completing an
Journal of Paediatrics and Child Health 51 (2015) 245–247 © 2014 The Authors Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
D Forbes and Z Grover
Tube-weaning programmes
intensive inpatient behavioral treatment program. J. Pediatr. Gastroernterol. Nutr. 2013; 57: 668–72. 11 Trabi T, Dunitz-Scheer M, Kratky E, Beckenbach H, Scheer P. Inpatient tube weaning in children with long-term feeding tube dependency: a retrospective analysis. Infant Ment. Health J. 2010; 31: 664–81. 12 Wilken M, Cremer V, Berry J, Bartmann P. Rapid home-based weaning of small children with feeding tube dependency: positive effects on feeding behaviour without deceleration of growth. Arch. Dis. Child 2013; 98: 856–61.
13 Wright CM, Smith KH, Morrison J. Withdrawing feeds from children on long term enteral feeding: factors associated with success and failure. Arch. Dis. Child 2011; 96: 433–9. 14 Marinschek S, Dunitz-Scheer M, Pahsini K, Geher B, Scheer PJ. Weaning children off enteral nutrition by netcoaching versus onsite treatment: a comparative study. J. Paediatr. Child Health 2014; 50. doi: 10.1111/jpc.12662 15 Jadcherla SR, Peng J, Moore R et al. Impact of personalized feeding program in 100 NICU infants: pathophysiology-based approach for better outcomes. J. Pediatr. Gastroenterol. Nutr. 2012; 54: 62–70.
Elephant patterns by Shivah Sinha (11) from Operation Art 2014.
Journal of Paediatrics and Child Health 51 (2015) 245–247 © 2014 The Authors Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
247
doi:10.1111/jpc.12763
VIEWPOINT
Tube feeding: Stopping more difficult than starting David Forbes1,2 and Zubin Grover1 1 Department of Gastroenterology, Princess Margaret Hospital for Children and 2School of Paediatrics & Child Health, University of Western Australia, Perth, Western Australia, Australia
Key words:
Australia; feeding behaviour; tube feeding.
Nutritional support using feeding tubes (nasogastric, gastrostomy or jejunostomy tubes) has facilitated survival and transition to out-of-hospital care for large numbers of children over the past three decades, with improved growth and quality of life, including transition to school.1 Patient age has progressively decreased, and the range of indications has increased.1 Nutrition support changed from being part of end-of-life support for individuals with terminal illness to part of a longterm treatment package.2 Despite widespread use of this technology, there are comparatively few assessments of long-term outcomes of tube feeding in children. This reflects the heterogeneous problems for which home enteral nutrition (HEN) is implemented, as well as the difficulties of monitoring large numbers of technologydependent children, cared for by all paediatric subspecialties. There were early indications that non-medical complications accompanied the use of HEN techniques in young children and that these were not always rated by health professionals as significantly as they were by families.3 Principal among these concerns has been the potential for ‘tube dependency’, and a long-term reluctance to eat and drink, often referred to as ‘oral aversion’. The prevalence of tube dependency in cohorts of children utilising HEN is uncertain. Benoit et al. could only confirm cessation of tube feeding in 21% of a Canadian cohort, and Daveluy et al. reported that less than 50% of long-term survivors successfully discontinued use of HEN.1,4 These children may demonstrate extremely challenging feeding behaviour, which can include absence of sucking, withdrawal from offered food, tongue chewing, gagging or extreme oromotor hypersensitivity with intolerance of sight or smell of food close to the mouth. Insufficient training of professionals in recognising, assessing and managing problematic feeding behaviour contributes to unnecessary parental anxiety as many start to doubt their ability to nurture. Knowledge of risk factors for feeding aversion has increased through the work of Rommel et al. who categorised feeding difficulties in a large clinical cohort of 700 Belgian children. Although this cohort was not exclusively children with tube dependency, it provides valuable insights into risk factors and Correspondence: Professor David Forbes, School of Paediatrics & Child Health, University of Western Australia, GPO Box D184, Perth, WA 6840, Australia. Fax: +61 893882097; email: [email protected] Conflict of interest: The authors have no conflicts of interest to declare. Accepted for publication 12 September 2014.
processes in the development of tube dependency. Feeding problems were classified in different groupings as primarily medical, oral problem or behavioural.5 Six hundred and three of the 700 children had a specific medical problem associated with their feeding difficulty: 42% of these an isolated gastrointestinal problem (most commonly gastro-oesophageal reflux); another 12% had a gastrointestinal problem in combination with other system disabilities, with neurologic disease, either alone or in combination with gastrointestinal disease, the next biggest contributor to this population. There were 427 children (61%) with an oral sensory or motor problem and 127 (18%) with a behavioural problem. Children in the first 2 years of life were more likely to have oral problems, while children with persistent feeding difficulties were more likely to have a medical or behavioural problem. Further analysis identified that gastrointestinal problems were more likely to be associated with oral feeding problems, neurologic problems with pharyngeal dysphagia and oral motor problems. Oral sensory problems were experienced by children with gastrointestinal and cardiac disease. Younger gestational age at birth was associated with oral-based feeding problems and higher gestational age with behavioural problems. Delay in introduction of feeding experience has been identified as a risk factor.5 Families of children with oral aversion are grateful that their child has survived early life-threatening illness and demonstrated an improved growth trajectory. However, most are desperate to move onto a more normalised eating behaviour, seeking help where they can find it or pursuing treatment in various parts of the world, either self-funded or via community or government support. Medical responses to this problem have been comparatively slow in many parts of the world, including Australia. Reports from several discipline areas and various parts of the world, including reports in this journal, now give this problem due emphasis. Appropriate problem recognition is an important first step, and in this issue of this journal, Marshall et al. document the validity of the The Behavioral Pediatrics Feeding Assessment Scale (BPFAS), a parent-completed tool for identifying feeding difficulties and for defining clinically significant feeding problems in an Australian setting.6 The high specificity of the BPFAS suggests that this tool can be used by non-specialists, with any children scoring above the recommended cut-offs for this tool being referred on for further evaluation and management. In another recent report in this journal, Gardiner et al. described the current status of tube-weaning programmes in
Journal of Paediatrics and Child Health 51 (2015) 245–247 © 2014 The Authors Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians).
245
Tube-weaning programmes
D Forbes and Z Grover
Australia, highlighting the lack of clinical practice guidelines and poor programme leadership across the country.7 International groups have now documented successful programmes utilising different approaches to tube dependency in different settings, which reflect evolution in our understanding and which have gone a long way to demystifying the challenge of tube dependency.4,8–13 Several elements are common to these programs. They all use multidisciplinary teams and multimodal assessment. All teams use paediatricians and mental health professionals, most use dieticians, and then there are various combinations of other health professionals including nurses, speech pathologists, occupational therapists and physiotherapists.4,8–13 All programmes have used induction of hunger to provoke oral feeding behaviour as the first step in tube weaning. This step needs supervision and monitoring to ensure that health is not compromised and that infant and parents are supported through a stressful period. Weight loss of 10–15% of body weight is reported.9 The mental health and behavioural component of the programme is key to success. Benoit et al. demonstrated early, in what remains the only randomised controlled trial, that weaning could not be achieved with nutritional manipulation alone, but behavioural intervention and support are necessary to achieve adequate oral intake.4 This is now undertaken in various manners, ranging form the ‘play picnic’ described by Trabi et al. to the videoed meal times reported by Silverman et al.10,11 The aims of these interventions are to educate and support the primary carers and to extinguish the behavioural responses that maintain tube dependency. The different reports noted here indicate that the process is more important than the setting. Inpatient and outpatient programmes and combinations of these have all reported success in achieving tube weaning and establishing oral intake. The recent report by Marinschek et al. is the latest report by the Austrian group from Graz, documenting a successful online tube weaning programme.14 This and the publication by Wilken et al. of a home-based programme utilising local paediatric resources and external mental health skills both reported around 90% success and demonstrate that it is not essential for families to travel to get access to special skills to achieve successful management of tube dependency.12,14 Most large centres in Australia have an appropriate range of resources that will enable successful treatment of tube dependency, either with a specialised team or with input from ad hoc teams that bring together expertise and commitment. The report by Gardiner et al. suggests that recognising local strengths and developing a practice guideline that results in consistent approaches will be important.7 Prevention of tube dependency in high-risk infants and children remains our next challenge. Infants with significant gastrooesophageal reflux, those requiring frequent oropharyngeal stimulation from suctioning or intubation and those with congenital anomalies or severe respiratory disease that limits the introduction of oral feedings are all at high risk of feeding aversion and tube dependency. A group from Columbus, Ohio has outlined their approach to preventing long-term tube dependency in high-risk infants.15 Their strategy involves understanding the physiology of the neonatal aero-digestive tract, using pharyngo-oesophageal video fluoroscopy and 246
manometry studies to determine the status of peristaltic and sphincter functions, and then developing individualised feeding plans within the neonatal intensive care unit that do not exceed the physiological capabilities of the infant. Attempts are made to avoid dependence upon continuous feeding, in order to provoke hunger, using oral bolus feeds alone or in combination with continuous feeds. Cue-based feeding approaches are utilised together with non-nutritive sucking, stimulation of taste sensation with sucrose on a pacifier/dummy, posturing to facilitate feeding and frequent pauses in feeding. They have documented higher rates of oral feeding at discharge and a reduced economic burden.15 While all the technology underpinning this approach may not be widely available, the simple approaches to feeding are available to all paediatric services and should be considered in improving outcomes for high-risk infants. The tale of tube dependency has lessons for paediatricians. Life-saving techniques were implemented widely, without adequate monitoring of their full impact. When problems started to become apparent, paediatricians did not listen to parents and only slowly developed strategies to deal with them. Although we are now seeing reports of successful management of tube dependency, there is still only one randomised controlled trial to guide us in this area.4 The challenge now is to use science, listen to families and integrate care across disciplines to prevent problems as well as to manage them in a cost-effective manner.
References 1 Daveluy W, Guimber D, Uhlen S et al. Dramatic changes in home-based enteral nutrition practices in children during an 11-year period. J. Pediatr. Gastroenterol. Nutr. 2006; 43: 240–4. 2 Howard L, Heaphey L, Timchalk M. A review of the current national status of home parenteral and enteral nutrition from the provider and consumer perspective. J. Pediatr. Gastroenterol. Nutr. 1986; 10: 416–24. 3 Michaelis C, Warzak W, Stanek K, Van Riper C. Parental and professional perceptions of problems associated with long-term pediatric home tube feeding. J. Am. Diet. Assoc. 1992; 92: 1235–8. 4 Benoit D, Wang EE, Zlotkin SH. Discontinuation of enterostomy tube feeding by behavioral treatment in early childhood: a randomized controlled trial. J. Pediatr. 2000; 137: 498–503. 5 Rommel N, De Meyer AM, Feenstra L, Veereman-Wauters G. The complexity of feeding problems in 700 infants and young children presenting to a tertiary care institution. J. Pediatr. Gastroenterol. Nutr. 2003; 37: 75–84. 6 Marshall J, Raatz M, Ward E, Dodrill P. The use of parent report to screen for feeding difficulties in young children. J. Paediatr. Child Health 2015; 51. doi: 10.1111/jpc.12729 7 Gardiner AY, Fuller DG, Vuillermin PJ. Tube-weaning infants and children: a survey of Australian and international practice. J. Paediatr. Child Health 2014; 50: 626–31. 8 Byars KC, Burklow KA, Ferguson K, O’Flaherty T, Santoro K, Kaul A. A multicomponent behavioral program for oral aversion in children dependent on gastrostomy feedings. J. Pediatr. Gastroenterol. Nutr. 2003; 37: 473–80. 9 Kindermann A, Kneepkens CM, Stok A, van Dijk EM, Engels M, Douwes AC. Discontinuation of tube feeding in young children by hunger provocation. J. Pediatr. Gastroenterol. Nutr. 2008; 47: 87–91. 10 Silverman AH, Kirby M, Clifford LM et al. Nutritional and psychosocial outcomes of gastrostomy tube-dependent children completing an
Journal of Paediatrics and Child Health 51 (2015) 245–247 © 2014 The Authors Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
D Forbes and Z Grover
Tube-weaning programmes
intensive inpatient behavioral treatment program. J. Pediatr. Gastroernterol. Nutr. 2013; 57: 668–72. 11 Trabi T, Dunitz-Scheer M, Kratky E, Beckenbach H, Scheer P. Inpatient tube weaning in children with long-term feeding tube dependency: a retrospective analysis. Infant Ment. Health J. 2010; 31: 664–81. 12 Wilken M, Cremer V, Berry J, Bartmann P. Rapid home-based weaning of small children with feeding tube dependency: positive effects on feeding behaviour without deceleration of growth. Arch. Dis. Child 2013; 98: 856–61.
13 Wright CM, Smith KH, Morrison J. Withdrawing feeds from children on long term enteral feeding: factors associated with success and failure. Arch. Dis. Child 2011; 96: 433–9. 14 Marinschek S, Dunitz-Scheer M, Pahsini K, Geher B, Scheer PJ. Weaning children off enteral nutrition by netcoaching versus onsite treatment: a comparative study. J. Paediatr. Child Health 2014; 50. doi: 10.1111/jpc.12662 15 Jadcherla SR, Peng J, Moore R et al. Impact of personalized feeding program in 100 NICU infants: pathophysiology-based approach for better outcomes. J. Pediatr. Gastroenterol. Nutr. 2012; 54: 62–70.
Elephant patterns by Shivah Sinha (11) from Operation Art 2014.
Journal of Paediatrics and Child Health 51 (2015) 245–247 © 2014 The Authors Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
247
