The Most Important Consideration for Weaning From Gastrostomy Tube Feeds is

Review

Weaning from a feeding tube in children with congenital heart disease: A review of the literature

Abstract

Background

Feeding support via nasogastric or gastrostomy tube is a common feature of care for children with congenital heart disease; however, prolonged tube feeding can lead to tube dependency and related long-term impacts on development and health.

Aim of Review

we reviewed the literature in order to characterize the state of the science on tube weaning programs in children with congenital heart disease.

Key Scientific Concepts of Review

The available evidence on tube weaning for children with congenital heart disease indicates that weaning can be highly successful in this population. Components that are common to successful tube weaning efforts include a multidisciplinary team, hunger induction or provocation, positive mealtime and oral experiences, behavioral interventions, early tube weaning goals, caregiver education and involvement, and follow up intervention. More research is warranted to determine the optimal combination and extent of these components and to inform progress toward more consistent practice.

Introduction

Congenital heart disease (CHD) is the most common of all congenital defects and affects nearly 1% of live births. About 1 in every 4 babies born with a heart defect has a critical congenital heart defect. Babies born with a critical congenital heart defect need surgery or other procedures in the first year of life [1,2]. A significant number of children with CHD require supplemental nutrition through nasogastric or gastrostomy tube feeding support early in life [3,4]. In particular, infants with single ventricle heart disease are at high risk for feeding difficulties preoperatively and postoperatively due to the complexity of their defect. In a prospective cohort study of 72 infants with critical congenital heart defects, including 34 with single ventricle physiology, nearly half (47%) required nasogastric or gastrostomy tube feeding support at hospital discharge [5]. Percentages of CHD morbidity have not changed notably over the past decade [4], and predictors of discharge with nasogastric or gastrostomy tube include chromosomal abnormalities or syndromes (e.g., DiGeorge, Alagile, VACTERL, Trisomy 21, Turner, Klinefelter), greater time from surgery to first oral feeding, longer ventilator dependence, as well as longer circulatory arrest and cross clamp time during surgery. In one retrospective study over a 7-year period at a pediatric hospital, of the 334 neonates who discharged home after stage 1 palliation, 74% required either nasogastric or gastrostomy tube feeding support [6]. In a 2014 analysis of single ventricle data from the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) registry from 47 pediatric cardiac programs, 56% of 465 patients required supplemental nutrition with a feeding tube at discharge from their stage 1 palliation, and 37% of these patients continued to require supplementation via nasogastric or gastrostomy tube at the time of their stage 2 palliation [7].

While supplemental tube feeding often is necessary to ensure that children with CHD can meet their nutritional needs and maintain adequate growth, continued feeding difficulties and the associated long term impact on oral development are significant concerns. Feeding difficulties in children with CHD are often multifactorial and can lead to poor growth and nutrition. The sequelae of feeding challenges can affect recovery from surgery and mortality in the short term, as well as impair psychosocial functioning and neurological development in the longer term [8].

Feeding a child via tube may suppress the internal motivation to consume food because this route of feeding is not as effective at regulating appetite as oral eating. Oral eating can be defined as when a child meets all of their nutritional needs through consuming a functional, age-appropriate diet [9]. Other negative side effects for the child as a result of long-term tube feeding include oral aversion, food refusal, tactile avoidance, retching, gagging, excessive vomiting, gastroesophageal reflux disease, and nausea [10]. Additionally, problematic physical complications for the child include tube dislodgement, perforations, leakage, blockage, and skin irritations such as eczema or granulation tissue [11,12]. More specific to naso/orogastric tube use, there is increased risk of aspiration; risk of blocking the airway in smaller infants; and nasal, esophageal, or tracheal irritation [13]. In addition to negative outcomes for children, parents are also affected; elevated parental stress, emotional and economic costs, and adverse effects on maternal identity also have been reported [9]. Moreover, feeding difficulties in infancy may correlate with poorer developmental outcomes, such as raising the risk for neurodevelopmental disability [5].

Of notable significance is that children who initially require nasogastric/gastrostomy tube placement are at risk of becoming tube dependent. Clinicians characterize tube dependency 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 [11,14,15]. Tube dependency develops in children who have the ability to ingest and digest food safely but require intervention to be weaned from their feeding tube [14]. It is often characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness, and other oppositional and aversive behavior [11,14]. Tube dependency has been defined as either a medical need for the tube (i.e., inability to consume the required nutrition through oral means because of cardiorespiratory insufficiency, gastrointestinal discomfort, or swallowing dysfunction that makes oral feeding unsafe), or a perceived need (i.e., ongoing feeding tube use when the initial health issues no longer necessitate medical use of the tube) [9].

Tube weaning has been defined as all of the processes and interventions required to transition an individual from dependency on nasogastric/gastrostomy tube feedings to oral eating that meets all nutrition requirements without disproportionately affecting development, social environment, and family [9]. Successful tube weaning is assessed by caloric intake in the short term coupled with weight status in the medium to long term [9]. It involves instilling a varied diet so that the child can adapt to a variety of environments where food is eaten as well as the social circumstances where food is the primary focus. Children have demonstrated accelerated gains in neurodevelopment after tube weaning. In a study of 48 participants, children gained 0.92 months of general development during tube weaning and gained 2.8 months in development after weaning from their feeding tube. The most significant gains were seen with motor development in that 3.09 months were gained after treatment while 0.12 months were lost during treatment [16].

Currently, there is limited guidance regarding best practices for tube weaning in children with CHD, despite the large proportion of infants with CHD who require tube feeding. The current literature on general tube weaning includes participants with CHD, indicating that these methods are applicable to this population [3,14,[17], [18], [19], [20], [21], [22], [23], [24], [25]]. Within the National Pediatric Cardiology Quality Improvement Collaborative, parents of children who have single ventricle heart disease have frequently expressed their frustration with the lack of guidance and support for tube weaning after the initial nasogastric/gastrostomy tube is placed. Clinicians have also struggled to provide adequate support due to lack of knowledge regarding best practices for tube weaning. Given these ongoing difficulties, we reviewed the literature on tube dependence and tube weaning in pediatric populations, with a focus on identifying key components of successful tube weaning programs. Where possible, we have highlighted the findings of programs that included children with CHD. Because more research is needed, we report on tube weaning programs more generally, as the components described are applicable to a CHD population. This review was completed by members of the Nutrition and Feeding Work Group within the NPC-QIC Collaborative.

Section snippets

Methods

The search terms 'Weaning OR Wean OR Stopping OR Discontinuing OR Discontinue OR Discontinued AND Tube feeding OR Gastrostomy OR Nasogastric OR Nasojejunal OR Nasoduodenal OR Feeding Tube Dependency AND Pediatric OR Child' were searched in the PubMed database, limited to the filters: English language and Human. The initial search yielded over 33 articles. A second search with the terms '"Feeding Behavior"[MeSH] OR "Feeding and Eating Disorders"[MeSH Terms] OR "Eating"[MeSH] AND "Heart Defects,

Results

We summarized the findings from our review on tube weaning research according to characteristics and commonly used components of successful weaning programs. Results are drawn from reports discussing general interventions as well as those specifically including children with CHD.

Optimizing tube weaning success

Blackman and Nelson note that appropriately identifying participants for tube weaning through assessing key areas of readiness typically leads to optimal success [32]. Criteria for readiness to tube wean include that the medical problem necessitating the feeding tube is stable, nutrition status is good, oral-motor skills are appropriate, swallowing is observed to be safe, and caregivers are ready to participate in the program [13,33]. Most of these criteria can be addressed by the

Discussion

Children with CHD continue to thrive and live longer due to advances in care. However, the impact of tube feeding on families affected by CHD is significant both with regard to neurodevelopment and quality of life, and there is limited support to manage and wean from tube feeding. The components of successful tube weaning for a general pediatric population with nasogastric/gastrostomy tubes are applicable and safe for a CHD population. The ability to orally feed has major implications for the

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Acknowledgements

We are grateful to the members of the NPC-QIC Nutrition and Growth Learning Lab for their advice and contributions to the concept of this review.

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Source: https://www.sciencedirect.com/science/article/abs/pii/S1058981321000801

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