591207 research-articleXXXX

CANXXX10.1177/1941406415591207Infant, Child, & Adolescent NutritionInfant, Child, & Adolescent Nutrition

ICAN: Infant, Child, & Adolescent Nutrition

October 2015

Clinical Research Reports

Home-Based Feeding Tube Weaning Outline of a New Treatment Modality for Children With Long-Term Feeding Tube Dependency Markus Wilken, PhD, Vanessa Cremer, MS, and Stephan Echtermeyer, SLT

Abstract: Introduction. Over the past 2 decades a dramatic increase of pediatric feeding via tube has been reported, which has resulted in a higher prevalence of feeding tube dependency (FTD). Several treatment programs for FTD have been established over the past 2 decades, but only a few with detailed outlines and definitions of terms have been published. This article will outline the home-based tube weaning program as well review existing evidence. Program Outline. The home-based treatment program is a new treatment modality that allows children to stay in a home environment during treatment. The underlying condition as well as the treatment in its 5 phases have been outlined: assessment, preparation, hunger induction, intensive treatment, and follow-up. Treatment Outcome. Three articles regarding the treatment outcomes of home-based FTD treatment were reviewed. The results of this review show that the success rate of the treatment program has been consistently 90% of the involved cases, with major improvements in eating behavior and without deceleration of growth. Conclusion. The home-based treatment program is a safe and promising new modality for FTD.

Keywords: feeding tube dependency; feeding disorder; treatment; feeding tube weaning; child nutrition

O

ver the past 2 decades, an increase in the use of enteral feeding via tube has been reported.1 Enteral feeding via tube has been shown to be effective in preventing aspiration and

prevents a child from transitioning from enteral to oral feeding after recovering from a medical condition.11,12 Because withdrawal of feedings via tube does not automatically result in an improved oral intake, treatment programs, interventions, settings, and modalities were established to ensure a safe transition to oral feeding after a long-term dependency on a feeding tube.7,9,10,13-19

“Enteral feeding via tube has been shown to be effective in preventing aspiration and weight faltering when the child is unable to meet his or her nutritional needs orally.” weight faltering when the child is unable to meet his or her nutritional needs orally.2-4 However, efficiency of enteral feeding is compromised by the high rate of long-term tube-related side effects, such as nausea, skin irritation, and granulation tissue, especially long-term feeding tube dependency (FTD).4-6 The feeding behaviors of children with FTD were reported as massive food refusal and feeding aversion, vomiting, and gagging.6-10 Thus, it can be assumed FTD

Home-based treatment of FDT and feeding tube weaning are relatively new modalities, which were first established in Germany in 2005. The program is based on a self-regulation approach with intensive psychological guidance during the transition process from enteral to oral feeding. A 2-year in-depth training program was establish to train therapists with a background in speech and language therapy or psychology in preparation to become a FTD therapist.

DOI: 10.1177/1941406415591207. From the Institute for Pediatric Feeding Tube Management and Weaning, Siegburg, Germany (MW, VC); and Sprachpuzzle, Huenfeld, Germany (SE). Address correspondence to Markus Wilken, PhD, Hohlweg 4, D-53721 Siegburg, Germany; e-mail: [email protected]. For reprints and permissions queries, please visit SAGE’s Web site at http://www.sagepub.com/journalsPermissions.nav. Copyright © 2015 The Author(s)

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Recently, promising treatment outcome data were published.9,10 However these publications did not have detailed outlines of the treatment modality, intervention, and complications. While outcome data are essential information to determine treatment safety and success, detailed descriptions of the treatment modality to overcome oral aversion are needed to understand how the program works and make an informed decision about which treatment modality meets the need of an individual case with FTD.7,18,19 This article will describe the condition of FTD as well as the assessment protocol, treatment program, and outcome of the home-based FTD treatment program. Defining Feeding Tube Dependency The condition of FTD has been described as an unintended side effect of intensive medical treatment.6 Infants and small children with chronic medical conditions are at high risk for FTD because of aversive and traumatic experiences during intensive medical care, such as intubation, suctioning, or procedures and experiences during longterm tube feedings (eg, nasogastric tube placement, vomiting, or feeding intolerance).6,7,18,20,21 To be diagnosed with FTD, the following criteria should be met: 1. The medical situation of the child does not justify feeding via tube: The use of a feeding tube must be justified by a medical condition that conflicts with oral feeding or an inability to meet the nutritional needs orally. As long as the medical condition does not allow oral feeding, the criteria for FTD are not met. With improvement of the medical condition, the health situation allows a feeding tube withdrawal and full oral feeding. Usually, at this point, the feeding tube will be withdrawn. If this withdrawal of a feeding tube fails due to food refusal and aversion, despite a health

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status sufficient for oral feeding, an FTD can be assumed. 2. Sufficient oral motor skills and swallowing ability: Due to a medical condition, neurological status, or oral inexperience, the oral motor capacity may be delayed or disturbed. An unsafe swallow with a high aspiration risk or oral dysphagia with no triggering of oral transport would prevent a child from transitioning safely to full oral feeding. A delayed oral motor development may compromise an oral intake, but usually these compromises improve with oral experience and do not conflict with full oral feeding. Therefore, an FTD be can be defined as a condition in which, despite a safe swallow with oral transport with delayed but sufficient oral motor skills, a child remains dependent on a feeding tube for most of his nutritional and fluid needs. 3. Disturbed feeding behavior: When a tube withdrawal for a child fails and cannot be related to a lack of swallowing ability or medical condition, the feeding behavior comes into focus. Frequently, food refusal and aversion were reported as key characteristics and symptoms of FTD.6-10,13,18 Food refusal is defined as follows: Presented food will be refused. The mouth remains closed when the child is approached with food. The child will display the refusal with mimics, gestures, or verbal expressions. When food is placed in the mouth, a child may spit it out or refuse to swallow it. Food aversion is defined as follows: A psychological repulsion or nausea in the presence of food. Food will not be tasted, and a feeding situation will be avoided under the circumstances of food aversion. Frequently symptoms such as gagging, pushing the spoon away, and stress indicators in the presence of food or a feeding situation are observed. Food aversion and food refusal may be present as a behavioral tendency during most of the mealtimes for children with

FTD. Occasional exceptions of food enjoyment may be observed but do not result in a general change in the behavioral tendency. However, these moments of enjoyment may indicate that a change in a feeding behavior is possible. During treatment the behavioral tendency should be changed from avoidance/refusal to food interest/ enjoyment. Therefore, FTD be can be defined as a condition in which children with stable health statuses and safe swallows remain dependent on feeding tubes for all or most of their nutritional and fluid needs due to food refusal and food aversion. Assessment Protocol (14 Days) Treatment safety is a crucial issue for the new treatment modality. To approach a wean for children, whose condition does not allow a tube withdrawal, places these children at risk for nonbeneficial and even dangerous treatment outcomes.14,22 A recent study has shown that treatment failed in 30% of the involved cases due to medical conditions, despite a multiprofessional assessment prior to the treatment.14 To prevent nonbeneficial outcomes, the protocol should be specifically designed to assess readiness for wean. We designed a readiness for wean protocol with specific criteria for readiness for wean, assessment domains, and methods. Criteria for Weaning Safety

1. Swallowing function: If the swallowing function is not safe, there is a major risk of aspiration of food and liquids. 2. Medical condition: The medical condition conflicts with fasting, oral feeding, or would allow the child only to eat unpalatable nutrition and a body mass index (BMI) below the 10th percentile. 3. Psychological conditions: The child’s psychological state allows no stress-inducing treatment, fasting, or conflict with self-regulation capacity.

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Table 1. Treatment Characteristics per Treatment Phase. Phase

Assessment Phase

Intensive Treatment

Hunger Induction

Follow-up

Duration

2-10 days

1-7 months

3-7 days

4-14 days

6 months

Intervention

Review medical reports

Playful feeding

Reduce nutrition supply via tube

Terminate nutrition supply via tube

 

 

Questionnaire assessment

Play picnics

10% per day for 5 days

Avoid avoidance trigger/reduce feeding anxiety

 

 

Video assessment

Doll feeding

Rearrange feeding situation

 

 

Parental interview

Reduced oral exposure

Establish healthy relationship with food

 

Treatment hours

6-14

6-12

3

30-100

4-16

Goal

Assess readiness for wean

Reduce oral aversion

Induce hunger

Transfer from tube to oral feeding

Build up a stable routine with food

  Complications

Increase oral acceptance Not known

 

Meeting the safety criteria is a sine qua non to enter a tube weaning program. Additionally, weaning should not only be considered as safe but also promising. Assessment Methods

The following methods are used to assess readiness to wean: 1. An intake interview conducted prior to the assessment 2. Completion of the Assessment Questionnaire for Feeding Disorder and Tube Weaning23 3. Review of all medical or treatment reports 4. Review of growth charts 272

Preparation Phase

Not known

Prevent relapse Weight loss

Weight loss

Food refusal during acute teething or infections

Distress by unexpected hunger and thirst

Initially insufficient supply with nutrition or fluids

Insufficient oral consumption

5. Review of nutritional status and feeding tolerance 6. Assessment of feeding behavior with an in vivo observation or videotaped situations of nutrition and fluid intakes Three domains of functioning will be assessed (medical condition, swallowing capability, and feeding behavior) based on material sent by the parents (Table 1). Medical Condition and Health Status Is Sufficiently Stable to Achieve Oral Feeding.  The medical report was reviewed to reconstruct the course of recovery and complications. The primary

indication for feeding tube placement as well as the feeding tolerance, digestion, growth, heart and lung functions, fine and gross motor skills, and neurological status were retrieved from the medical reports. During the review, the progress in recovery, especially, recent health status, will be assessed to determine if this primary indication is resolved and no other medical conditions are given, which would conflict with tube withdraw. If the child’s current medical status cannot be sufficiently assessed by the medical reports, the medical team was contacted to gather crucial information. Additionally, the medical reports were the source of information

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regarding possible fear-inducing or traumatic oral experiences, such as intubation, placement of nasogastric tubes, suctioning, or bouginage.21 Readiness to wean for this domain is defined as sufficient medical stability and absence of a medical condition that conflicts with a wean, as well as sufficient food tolerance and a BMI above the 10th percentile based on national standards. Swallowing Capacity and Oral Motor Status.  All existing reports regarding the swallowing capability, oral motor status, attempts at oral feeding, as well as oral motor and swallowing evaluation from other professionals were reviewed. The feeding history was reviewed for frequent and unexpected chest infections. The oral motor and swallowing abilities were retrieved from the parent’s report in the questionnaire, as well as the videotaped feeding situation. Due to lack of oral experience, oral motor skills may not be ageappropriate. However, the trigger of swallowing during the oral phase, tongue and lip movements, and full mouth closure are good indicators of sufficient oral motor skills. For clinical swallowing, as well as oral motor skill assessment, a structured feeding video assessment tool was designed.24 If the child’s swallowing ability cannot be assessed as safe, if there is reasonable doubt about swallowing safety, or if a child is reported with a high aspiration risk, a videofluroscopic or videoendoscopic swallowing study was requested before an FTD treatment will be considered. Readiness to wean for this domain is defined as safe swallowing for all age-appropriate consistencies and a sufficient oral motor capacity to be orally fed. Feeding Behavior: Ability to Meet Required Oral Intake.  Feeding behavior and its disturbances and disorders are the central elements of the assessment. It is less a safety issue, but more an issue in how promising a wean is in the near future. When a child is being fed via tube, feeding behavior may be compromised by the absence of hunger and thirst.

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While lower oral intake and lack of food interest can be explained by absence of hunger, food aversion and refusal cannot. Food aversion and refusal indicates FTD and intensive treatment, while a lack of interest would, under some circumstances, be sufficiently addressed with hunger induction via local services. Therefore, the occurrence of food aversion and food refusal has to be assessed in this domain. Parents are asked in the questionnaire for a supply percentage of fluids and nutrition via tube, as well as for total oral consumption and preferences. The more interest and preferences, as well as intake, a child shows, the more he or she should be considered ready for weaning. Parents report frequency such as food refusal, gagging, and vomiting per day. The frequency of symptoms have shown high correlations to the Feeding Adversity Scale, suggesting that a higher frequency shows a more manifest behavioral tendency in the refusal/ aversion spectrum.13 Direct observation or videographed feeding situation, which is assessed using the specifically designed “Readiness for Wean–Feeding Scale,” is more specific.24 Feeding behaviors were assessed via 5 subscales: Swallowing and Oral Motor Function, Feeding and Eating Behavior, Parent–Child Feeding Relationship, Parental and Child Stress, and Medical Symptoms. Feeding symptoms and feeding behavior may reveal a disturbed behavioral tendency. The disturbed behavioral tendency must not be attributed to disruptions in the parent– child relationship, general child posttraumatic stress disorder (PTSD), or a medical condition. A perturbed parent– child relationship, a child PTSD, and medical condition have to be addressed during the preparation phase to allow the child a promising transition to oral feeding. A disturbed feeding pattern in the absence of symptoms for PTSD, disturbed relationship, or medical compromising factors during feeding are strong indications for FTD treatment and feeding tube wean. Finalizing the Assessment.  The assessor outlined if the current medical status

warranted a feeding tube wean and if FTD treatment had a promising outlook. In cases in which the results were ambiguous, a second trained assessor reviewed the written report. Children were only assessed as ready to wean after meeting all 3 domains of the criteria for readiness to wean. If the criteria for tube weaning readiness were not met, the parents were informed which domains of functioning conflicted with feeding tube withdrawal and in which developmental domains progress had to be made to indicate readiness to wean. When a child shows improvement in these domains, a reassessment was undertaken. In some cases, such as cystic fibrosis, kidney transplant, or metabolic diseases, the medical condition conflicts with a complete withdrawal of the tube. However, feeding behavior in such cases can still be improved. In these cases, the child was assessed as ready for a part or gradual wean. The treatment program has to be modified according to a child’s needs and adapted to the medical condition. Treatment Success Criteria A significant improvement in voluntary consumption and reduction in food aversion, which allow the child to safely transfer from tube to oral feeding, is the primary treatment goal. The secondary treatment goal is defined as improved oral motor skills resulting in intake of various consistencies and a variety of food. The third treatment goal is an ageappropriate consumption of food, where an appropriate posttreatment weight gain should be targeted. Meeting these 3 goals would represent a healthy relationship with food. Preparation (1-12 Months) Prior to intensive treatment, children as well as parents were prepared for the treatment. Most frequently, playful feeding, such as a play picnic, doll feeding, or joyful food play, was introduced in the weekly routine of the child. Frequent phone consultations were scheduled with the parents to monitor 273

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October 2015

Table 2. Hunger Induction Plan Example. Before

Day 1

10 am

200 mL

100 mL

1 pm

200 mL

200 mL

200 mL

150 mL

150 mL

150 mL

5 pm

200 mL

200 mL

200 mL

200 mL

200 mL

200 mL

Overnight

400 mL

400 mL

400 mL

350 mL

250 mL

250 mL

Total

1000 mL

900 mL

800 mL

700 mL

600 mL

500 mL

the child’s progress, as well as prepare them for the feeding tube wean. The primary goal during the preparation phase is to reduce oral aversion and increase oral interest. The preparation interventions were coordinated between the FTD therapist and the local treatment, which was already involved in the care and treatment of the child with FTD. Hunger Induction (5 Days) Because feeding via tube suppresses the hunger-motivated instinct to eat, hunger induction is an essential precondition of a feeding tube wean. To induce hunger and thirst, the total amount of fluids and nutrition given via tube were reduced over the course of 5 days (Table 2). Nutrition and fluid volumes were reduced by 10% of the original value each day. Therefore, after 5 days 50% of the original volume was given. An individual reduction schedule will be compiled and explained to parents. Parents were encouraged to contact the feeding therapists daily during this phase of the intervention. Major improvements during hunger induction were not expected during this phase. Intensive Treatment (5-14 Days) Treatment Setting

The program was designed as a homebased treatment program, which can occur in a family’s home or a rental 274

Day 2

Day 3

Day 4

house were the family stays during the treatment period. If necessary, FTD therapists travelled to the treatment home and were close to the location for the duration of the intensive phase. The families were visited for all or most of the meals in the home for 4 to 12 hours per day. A pediatrician was monitoring the medical and health status of the child during the intensive phase. During the intensive treatment phase, a majority of children will go through 3 stages of weaning. Stages of Intensive Treatment

Stage I: Overcome Oral Aversion and Food Fear (1-7 Days).  Avoidance and fear is usually triggered by specific cues, such as spoons, bottles, or high chairs. To prevent a behavioral tendency of fear and avoidance, the situation was rearranged to avoid these triggers. For example, the feeding took place on a floor or on a lap; the child is fed from a cup instead of a bottle; and play feeding, such as feeding dolls, parents, or the therapists, and play picnic were used. Food should be exposed carefully and not directly. For example, food was consumed by the therapist in front of the child. A more comfortable feeding situation can be established with an increased appetite, reduction of food aversion, and establishment of a functional feeding relationship. Even then, children may have distress when exposed to food, which has to be regulated by the attachment figures and supported by the feeding therapists.25

Day 5

Intensive Phase (1-10 Days) No or minimal supplement with food or water

Elements of psychodynamic play therapy were used when the children showed negative effects, such as fear, anger, and desperation. The first oral intake marked the transition from stage I to stage II of the intensive phase. Stage II: Establish Confidence in Oral Feeding (1-3 Days).  When children overcome food fear and aversion, they usually show interest in food that is accompanied by hunger or thirst signals. The parent–child relationship is the foundation for a change in the feeding situation. Therefore, parents would feed their child. The therapist will only feed when he or she is specifically asked to do so by the parents or child, or for a better understanding of the child’s functional status. The therapist will suggest changes or direct the parents’ pacing or timing to improve the interactional routine. The therapist and the parents follow the child’s initiative, food choice, and accept the child’s food refusal. During this phase, the intake per mealtime can be low at first, which usually results in more frequent mealtimes per day. Mealtimes can be videotaped and used to mirror the child’s behavioral tendencies as well as monitor the progress toward an adaptive feeding pattern. When the mealtimes increase in length and an increase of consumption can be observed, the child transitions to stage III. Stage III: Building a Feeding Routine (1-5 Days).  An age-appropriated feeding

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schedule is the last step to move from enteral to oral feeding. This should be established according to the child’s hunger-satiety circle. The nutritional and fluid needs were assessed and should be met in the last stage of the intensive phase. The food choices, cups, bottles, or spoons must be adjusted to the oral motor status of the child. A lack of oral experience may result in a deficit in feeding skills and need further orofacial regulation treatment.26 Orofacial regulation treatment is based on the concept of Castillo Morales (CM). In the CM concept, the oral motor function is part of the functioning of the whole body system. Different functional levels have to be integrated to master oral intake. Therefore, the CM interventions focus on the whole body system with the regulation of the muscle tension and activation, positioning, and body awareness of the child. Especially for children with traumatic experiences, the concept is very helpful because stimulation in the facial area can be avoided if necessary. In some cases, children need more time to develop the appropriated feeding skills. In these cases a small amount of supplementation (5% to 15% of total consumption of nutrition and fluids) can be necessary to allow the child to be fed sufficiently and to have enough strength to develop the skills. It is crucial to obtain a sustainable, developmental age-appropriate feeding routine before the child is discharged from the program. Based on this routine, parents and children can develop a stable feeding relationship and a healthy relationship with food. Complications During the Process of FTD Treatment and Feeding Tube Weaning During a wean, a significant lack of oral consumption of nutrition and fluids can result in short-term underfeeding, as well as constipation. During the intensive phase, a 10% weight loss is acceptable for children with a BMI between the 10th and 25th percentiles. For children with a BMI between the 25th and 70th percentiles, a 15% weight loss may be

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acceptable depending on a patient’s medical condition. Initial weight loss and gain during follow-up was carefully monitored. To ensure treatment safety, an FTD therapist monitored urination, bowel movements, energy level, weight loss, and oral intake and reported them to the pediatrician. Laxative suppositories were given, when the child had no bowl movements. For older children oral laxatives would be given via tube, if constipation was an issue prior to the wean. Standard forms were developed for documenting possible side effects. Parents were encouraged to contact a therapist whenever unusual behavior was observed. Follow-up Children were followed for at least 6 months postdischarge by the FTD therapist involved in the intensive treatment of the child. In the first 4 weeks after discharge, a weekly phone conference occurred. The families reported feeding behavior, oral consumption, weight gains or losses, bowel movement, and urination. If symptoms of FTD during mealtimes were still present, the frequency as well as strategies to reduce symptoms and increase oral intake were discussed. Growth and weight gain and loss were monitored on a weekly basis and followed by a FTD therapist as well as a local pediatrician. When the feeding behavior and body weight followed a stable trend, the frequency of follow-ups was reduced to once a month or less. Treatment Outcome Three studies were published by an author regarding the outcomes of homebased FTD treatment. Two of these studies were in English and one in German. All the studies had a prospective design, and 2 of the studies were case reports9,27 and 1 study was a prospective longitudinal study.10 The 3 papers addressed success rate, impact on eating behavior, and impact on weight gain and growth as target variables regarding the FTD treatment outcome. All the studies

and reports were prospectively designed with pre- and postmeasurements. All the children were treated following the protocol outlined above. Sample Characteristics

These studies represent a total of 94 cases (mean age = 22.6 ± 13.1). For 92 of the cases, a chronic medical condition was reported. Most frequently congenital malformations of the heart, gut, or esophagus (n = 35; 36%), a history of prematurity and low birth weight (n = 35; 36%), and neurological conditions (n = 15; 15%) were reported (Table 3). There was no significant difference in the distribution of the medical conditions. Success Rate

The success rates reported were between 89.5% and 93%. From the total of 94 cases, 85 cases could be successfully weaned, resulting in an overall success rate of 90.4% One article addressed the issue of developmental delay and disability on treatment success and did not find differences in the outcome based on the developmental status of the child.27 The success rate range in these studies was higher compared to other published success rates between 63%13 and 92%.15 Impact on Eating Behavior

The hunger induction itself did not result in a sufficient oral intake for most of the reported cases. The complete withdraw of all tube feedings resulted in immediate oral consumption of food and fluids in 28% of the cases. The children began to take fluids (median = day 1) before they started to take nutrition (median = day 3). Developmental delay and disability did not have an impact once the child started to eat.27 In 2 studies, the frequency of the FTD symptoms were addressed.9,10 Both the studies showed a significant decrease in the FTD symptoms from entering the program to the follow-up. They also reported a significantly improved eating behavior, significant decrease of the FTD symptoms, and significant reduction of supplemental feeding via tube. 275

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October 2015

Table 3. Treatment Outcome of the Home-Based FTD Treatment Program. Authors Wilken and Jotzo (2008)27

Design

N

Mean Age (months)

Successful Weaned (%)

Prospective; case report

28

29.6 ± 17.2

25 (89.3)

  Wilken and Berry (2012)9

Key Results Intake of fluids were taken (median: day 1) before nutrition (median: day 3) The child’s developmental status has no impact on the treatment success

Prospective; case report

27

21.5 ± 13.7

25 (92.6)

Four cases were not found to be eligible and excluded from the program

 

FTD symptoms significantly decreased during the program

 

Majority of cases were reported to be 100% orally fed (n = 21) while 3 cases remained tube dependent for 50% due to medical conditions

Wilken et al (2013)10

Prospective; longitudinal study

39

20.9 ± 12.4

35 (89.7)

 

Total/mean

Significantly improved feeding and mealtime behavior Nutrition and fluids were taken orally; differences in BMI pretreatment and at follow-up were not significant

94

22.6 ± 13.1

85 (90.4)

 

Abbreviations: FTD, feeding tube dependency; BMI, body mass index.

Impact on Weight Gain and Growth

Short-term weight loss after an intensive treatment was reported in 6.2 ± 2.9% (range = 0% to 11.6%) of the cases,10 which was similar to weight loss in other treatment programs.15-17 There were no long-term differences in BMI before entering the program compared to the follow-up.10 The initial weight loss did not have a negative impact on the growth of children who transitioned from tube to oral feeding. Discussion The constant and dramatic increase of home enteral nutrition has resulted in an increased request for treating FTD. Such a treatment program has been outlined in this article. Few studies have outlined 276

their treatment programs in detail, which results in a lack of treatment transparency and hinders further development of new and adapted interventions and treatment modalities.18,19 Furthermore, criteria and definitions of terms are needed in such outline studies. This would allow a detailed analysis of the structures and compatibility of programs and the development of standards for treatment and training for FTD treatment. Training for therapists working with children with FTD in a home-based setting were mentioned but not outlined in this article. Therapists from different professional backgrounds, like psychologists, speech and language therapists, occupational therapists, or physiotherapists, were trained to become FTD therapists. FTD therapist training

designed as onsite training is necessary to develop the appropriate professional skills to support families during the transition from enteral to oral feeding. These onsite trainings have contributed to the spread and establishment of home-based weaning programs in Europe,10 Australia, New Zealand, South Africa, and the United Kingdom.9 However, the increased prevalence of FTD and high treatment demands cannot be met because of therapist shortage. As a consequence, children remain tube-dependent longer than medically indicated.28 One challenge in setting up training programs is that different professionals have started tube weaning programs that include speech and language therapists,7 occupational therapists,10 psychologists,10,13,14,18 as well as pediatricians15-17 and dietitians.19 Because professional training does not

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prepare therapists for the specific needs of tube-dependent children, special onsite training is necessary to develop the professional skills needed to support families during the transition from enteral to oral feeding. FTD treatment programs have been frequently criticized lacking evidence, and concerns were raised regarding the safety of the treatment, especially for medically complex cases. The review of the treatment outcome studies in this article revealed an overall success rate of 90% for this treatment modality. The majority of the cases were children with medically complex conditions, who have shown improved feeding behaviors posttreatment without long-term deceleration of growth. In particular, the daily monitoring by a trained FTD therapist and the home-based environment reduced the nosocomial infection risk for children with complex medical conditions.29 While a randomized controlled trial and multicenter study are missing, this program is 1 of 2 programs that have published longitudinal data with an appropriate sample size with data regarding feeding behavior and growth. It may be concluded that the reviewed data suggest the treatment program is efficient and safe, but further research is needed. Acknowledgments We are grateful to the participating families and to the pediatricians who carefully guided parents through the tube withdrawal.

Author Note The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors received no financial support for the research, authorship, and/or publication of this article.

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how to stop. Eur J Clin Nutr. 2010;64(suppl 1):S17-S21. 3. Arvedson JC. Feeding children with cerebral palsy and swallowing difficulties. Eur J Clin Nutr. 2013;67(suppl 2):S9-S12. 4. Craig GM, Carr LJ, Cass H, et al. Medical, surgical, and health outcomes of gastrostomy feeding. Dev Med Child Neurol. 2006;48:353-360. 5. Sleigh G, Brocklehurst P. Gastrostomy feeding in cerebral palsy: a systematic review. Arch Dis Child. 2004;89:534-539. 6. Dunitz-Scheer M, Levine A, Roth Y, et al. Prevention and treatment of tube dependency in infancy and early childhood. Infant Child Adolesc Nutr. 2009;1:73-82. 7. Tarbell MC, Allaire JH. Children with feeding tube dependency: treating the whole child. Infants Young Child. 2002;15:29-41. 8. Wilken M. DC: 0-3 classification in tube dependent children [abstract]. Infant Ment Health J. 2012;33:201. 9. Wilken M, Berry J. Home-based rapid enteral feeding tube weaning. Poster presented at: the Long Term Tube (Enteral) Feeding: Exploring Dilemmas and Controversies Conference; October 4-5, 2012; Glasgow, United Kingdom. 10. 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;98:856-861.

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11. Pederson S, Parsons H, Dewey D. Stress levels experienced by the parents of enterally fed children. Child Care Health Dev. 2004;30:507-513.

23. Wilken M, Jotzo M. Assessment Questionnaire for Feeding Disorder and Tube Weaning (AFT). Unpublished questionnaire, Siegburg, Germany; 2012.

12. Pediatric Society New Zealand. Short Report: Long-Term Enteral Nutrition Survey. Wellington, New Zealand: New Zealand Child Health Service. http://www. parliament.nz/resource/en-nz/50SCHE_ EVI_50DBHOH_PET3204_1_A400193/ f4d986d4ff53223110e5b0c1223f47ade 47ee5a6. Accessed October 2013.

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