Transitioning From Nasogastric Feeding Tube to Gastrostomy Tube in Pediatric Patients: A Survey on Decision-Making and Practice
Abstract
Background
Tube feeding via nasogastric tubes (NGTs) and gastrostomy tubes (GTs) is a common practice for children unable to meet their nutrition needs by oral feeding alone. There is currently a lack of evidence-based guidance specific for the process of transitioning from an NGT to GT as a longer-term enteral access device. Uncertainty in the literature about feeding tube choices, practices, and transitions requires clinicians to draw on incomplete and sometimes conflicting evidence, personal experience, economic realities, and compassion to deliver supportive child-centered care.
Methods
The ASPEN Enteral Nutrition Task Force Pediatric Work Group designed a survey to explore current practice of enteral access device safety and use among pediatric clinicians practicing in the US and Canada. The survey aimed to define time frames, parameters, and decision points to guide clinicians and families in the transition from NG to GT feeding.
Results
258 clinicians, 55% practicing in an inpatient setting, 17% in-home patient setting, and 28% practicing in both inpatient and outpatient setting. 22% were physicians, 42% were dietitians, 32% were nurses or advanced practice nurses, 2% were pharmacists. The most common feeding tubes used were NGTs followed by GTs. Majority of respondents indicated that they did not have a specific timeline for when an NGT should be changed to a GT. Highest ranked patient factors or clinical considerations prior to recommending changing from an NGT to a GT were exceeding the duration for temporary feeding or the need for an extended duration of tube feeding. Highest physician barriers to GT placement were the reluctance for referral from primary care doctors for GT placement. Majority of respondents reported the use of NGTs for enteral access at home and that parents were taught how to place the NGTs for home use but without consistently being taught the use of pH paper to verify NGT tip location or being provided with the pH paper to perform this task at home.
Conclusions
This survey is the first step to address the knowledge gap surrounding feeding tube choices by ascertaining the current standard of practice regarding enteral access devices and appropriate timing of transitioning from NGT to GT feeding. The results highlight current practice variability and concerns. Information from the survey was used to formulate a decision tree to guide the transition of NGT to GT feeding that nutrition support professionals can use to advocate for best practices in their hospital and community settings.
Introduction
Enteral nutrition (EN) support is commonplace in pediatric hospitals and community settings. A study involving 63 pediatric facilities showed that 1 in 4 hospitalized children had a nasogastric (NG), orogastric, or postpyloric feeding tube.1 Much less is known about the frequency, duration, and route of feeding in pediatric home EN support. The number of children receiving long-term home EN has an estimated incidence of 2–3 children per 100,000.2 Mundi and colleagues reported that in the US, 189,036 children receive home EN.3 Despite the large number of children receiving home enteral support via feeding tubes, health professionals often experience decisional uncertainty when caring for children requiring tube feeding in the community and lack guidance from the medical literature regarding the transition between short- and more long-term enteral access devices like gastrostomy tubes (GTs).4
Clinical experience suggests a high degree of variation in multiple aspects of the provision of home enteral tube feeding: the clinical process, presumed safety and complications of initiating NG tube (NGT) feeding in community settings, standard daily tube care, frequency of tube changes, caregiver education, and follow-up care. There is also considerable difference in practice regarding the need to transition to a more permanent enteral access (ie, GT). In addition, there is a variable duration of NGT use before discussing GT placement with caregivers and a wide variation in the provision of guidance by the clinical team to the caregivers in the decision-making process for such transitions.
This lack of evidence-based guidance led the American Society for Parenteral and Enteral Nutrition (ASPEN) Board of Directors to charge the ASPEN Enteral Nutrition Task Force Pediatric Work Group with addressing this issue to achieve a consensus for best practices. The project began with a survey of pediatric nutrition support professionals and pediatric gastroenterologists. The objectives of the survey were to determine the following: (1) the types of feeding tubes commonly seen in practice; (2) the perceptions, clinical considerations, and indications for transitioning from NGTs to more permanent GTs; (3) institutional, medical, clinical, and caregiver barriers to GT placement; and (4) current care practices of children at home with NGTs. Any recommendations in this article do not constitute medical or other professional advice and should not be taken as such. To the extent that the information published herein may be used to assist in the care of patients, this is the result of the sole professional judgment of the attending healthcare professional whose judgment is the primary component of quality medical care. The information presented here is not a substitute for the exercise of such judgment by the healthcare professional. Circumstances in clinical settings and patient indications may require actions different from those recommended in this document, and in those cases, the judgment of the treating professional should prevail. This article was approved by the ASPEN Board of Directors.
Methods
The ASPEN Enteral Nutrition Task Force Pediatric Work Group designed a survey to explore current practice of enteral access device safety and use among pediatric clinicians practicing in the US and Canada. Specifically, the survey aimed to define time frames, parameters, and decision points to guide clinicians and families in the transition from NG to GT feeding. The research was reviewed and approved by the Children's Mercy Hospital Kansas City Institutional Review Board. No external funding, donations, or product discounts were received for this project or manuscript.
The survey was viewed by a multidisciplinary group of pediatric clinicians to provide content validity. To optimize the highest participation rates, the survey was timed to take only 15 minutes to complete, and individual survey responses were voluntary, anonymous, and confidential. An electronic copy of the raw data was kept on a password-protected computer at ASPEN headquarters. The survey was administered in September 2019, and data were collected for 5 weeks with 1 additional electronic reminder to encourage potential respondents to complete the survey. The potential participants selected to be surveyed were clinicians caring for children or neonates. The survey was emailed to ASPEN members in the US and Canada and posted online on the Pediatric Gastroenterology (Ped GI) Listserv at the University of Vermont. Of the 2 groups to whom the survey was sent, a total of 3178 clinicians were eligible to participate, but some of those potential respondents between the 2 groups may have overlapped.
Results
Respondent Demographics
Two hundred fifty-eight clinicians who care for neonates or children requiring tube feeding participated in the survey. Based on 3178 potential survey respondents (assuming no overlap between ASPEN members and the Ped GI Listserv members), the minimum response rate was approximately 8.1%. Among the respondents, 55% of their clinical practice setting was inpatient, 17% treated children in their homes or outpatient settings, and 28% practiced in both inpatient and outpatient settings. Twenty-two percent of the survey respondents were physicians, 42% were dietitians, 32% were nurses or advanced practice nurses, 2% were pharmacists, and 2% were others.
Feeding Tubes
Among the most common types of feeding tubes, NGTs were ranked most common, followed by GTs. Other access devices were reported but with low responses. When asked about the time frame for the routine replacement of NGTs in their respective hospitals, the majority of respondents indicated that NGTs were replaced either monthly (29.2%) or when they become dislodged (25%). When asked about the timeline for when an NGT should be changed to a GT, the majority of respondents indicated they did not have a specific time frame (64.8%). Respondents said that the usual practice of transition from NG to GT feeding was based on child and family factors, the child's medical condition, and institutional and social issues (see Table 1). Most respondents indicated that they did not have a standardized time frame for the transition from NGT to GT, but in those who had a time frame, answers varied between 6 weeks and 12 months. The most common response provided by 27.9% of the respondents stated that typically NGTs were in place for 3 months before GT placement. Additional free-text responses also emphasized the decision to transition from NG to GT was made on a case-by-case basis, taking into consideration the child's age, prognosis for oral feeding, whether or not progress was being made with oral feedings, and the clinician's willingness to proceed with the change in enteral access (see Table 1).
| Most common feeding tubes experienced by respondents (n = 193) | Ranking score (ranking scale: 6 = most common, 1 = least common) |
|---|---|
| NGTs | 5.3 |
| GTs | 5.2 |
| Gastrojejunostomy tubes | 3.6 |
| Nasoduodenal/nasojejunal tubes | 3.5 |
| Jejunal tubes | 2.2 |
| When are NGTs routinely replaced in your hospital? (n = 192) | Percent of responses (%) |
| 1 month | 29.2 |
| Only when dislodged | 25 |
| Do not know | 20.8 |
| 1 week | 15.1 |
| Depends on tube material | 12 |
| >1 month | 10.9 |
| Depends on age of patient | 9.9 |
| Several times per week | 6.3 |
| Daily | 3.1 |
| When should NGT should be changed to GT?a (n = 193) | Percent of responses (%) |
| No specific time (base time on child, family, or medical or social issues) | 64.8 |
| 3 months | 15.5 |
| 4–6 weeks | 10.9 |
| 6 months | 4.7 |
| 12 months | 2.6 |
| Other | 1.6 |
| In your institution, how long are tubes in place before converting to GT? (n = 193) | Percent of responses (%) |
| 3 months | 27.9 |
| Various or depends on patient factors | 22.8 |
| 6 weeks | 15 |
| 6 months | 13.5 |
| 1 month | 11.9 |
| 12 months | 3.6 |
| Do not know or not applicable | 3.1 |
| Other | 2.1 |
- GT, gastrostomy tube; NGT, nasogastric tube.
- a This question was asking the clinician's opinion on when this transition should occur.
When asked to rank patient factors or clinical considerations prior to recommending changing from an NGT to a GT, the 2 highest-ranked answers were “exceeding the duration for temporary feeding” or “the need for an extended duration of tube feeding.” A parental request for transition from NGT to GT was among the lowest ranked clinical considerations by clinicians participating in the survey. In addition, in free-text responses, several respondents commented that a strong parental preference for the continued use of NGTs was a barrier to proceeding with GT placement (see Table 2).
| Most common clinical consideration for transition to a GT (n = 193) | Ranking score (ranking scale: 7 = most common, 1 = least common) |
|---|---|
| Need for extended duration of tube feeding | 6.2 |
| Lack of progress with EN or oral feeding prognosis is poor | 5.7 |
| Child with neurodisability | 5.2 |
| Significant gastric reflux | 3.6 |
| Patient on noninvasive ventilator support | 3.6 |
| Parent requests | 2.9 |
| Medically stable | 0 |
| Most common indication for transition to a GT (n = 193) | Ranking score (ranking scale: 8 = most common, 1 = least common) |
|---|---|
| NGT duration for temporary feeding has been met or exceeded | 6.5 |
| High aspiration risk | 5.7 |
| Frequent inadvertent NGT removal requiring reinsertions | 5.4 |
| Mechanical difficulty with NGT insertion due to prolonged NGT use | 4.9 |
| Technical challenges with NGT feeding | 4.6 |
| Development of oral aversion | 4.4 |
| NGT insertion complicated by a tube misplacement event | 2.6 |
| Concern about sinusitis | 2.2 |
- EN, enteral nutrition; GT, gastrostomy tube; NGT, nasogastric tube.
Barriers to Transition
A number of institutional, physician, parent, and clinical barriers to transitioning from an NGT to a more permanent GT are encountered by clinicians (Table 3). One common theme that emerged was concern among clinicians about the indications, invasiveness, and risk of complications in changing from NGT to GT. In addition, clinicians reported that transitioning to a GT was frequently viewed as a barrier to progressing with oral feeding. Physician barriers to GT placement in order of frequency from highest to lowest were as follows: the reluctance for referral from primary care doctors for GT placement, the proceduralist or surgeon not agreeing with the indication for GT or viewing GT as a low priority, and lack of availability of or reluctance of anesthesia services to get involved because of the child's medical complexity. Indeed, the complexity of the children was repeatedly cited in institutional, physician, and medical barriers to GT placement, including lack of postoperative intensive care beds and lack of services for a follow-up. Respondents also listed institutional initiatives to decrease GT placement, institutional requirements of age and diagnosis to be met before GT placement, and the requirement of multiple team assessments due to the complexity of the children all as barriers to GT placement. Insurance, funding, and lack of availability of pediatric tube sizes were also mentioned as barriers to GT placement in additional comments by respondents.
| Type of barriersa | Percent of responses (%) |
|---|---|
| Institutional barriers | |
| Perceived elective case | 31.8 |
| Access to procedural services (room or time) | 30.7 |
| No institutional barriers | 26.8 |
| Long-term care postplacement not available | 9.5 |
| Case frequently bumped | 8.9 |
| Pediatric-trained proceduralist/surgeon not associated with institution | 7.8 |
| Other noninstitutional barriers | 7.3 |
| Other institutional barriers | 6.7 |
| Physician barriers | |
| Reluctance for referral from primary care doctors | 31.3 |
| Proceduralist/surgeon does not agree with indication | 24.6 |
| Proceduralist/surgeon views placement as a low priority | 24.6 |
| No physician barriers | 24 |
| Anesthesiology not available | 18.4 |
| Anesthesiology reluctant to anesthetize because of patient complexity | 3.9 |
| Nonphysician barriers | 3.4 |
| Other physician barriers | 2.2 |
| Clinical barriers | |
| Risk for anesthesia | 54.8 |
| Multiple abdominal surgical procedures | 53.2 |
| Ascites | 29.6 |
| Chronic liver disease/portal hypertension | 28.5 |
| Bleeding disorders | 28 |
| Other clinical barriers | 10.2 |
| No clinical barriers | 7.5 |
| Other nonclinical barriers | 1 |
| Parent/caregiver barriers | |
| Belief that GT is permanent and cannot be removed | 73.6 |
| Belief that placement will lead to further decline of oral feeding | 68.9 |
| Fear of the surgery | 64.8 |
| Do not agree that a GT is necessary | 64.3 |
| Fearful of the presence of surgically placed feeding tube | 54.9 |
| Guilt over failure of NGT | 33.9 |
| Perceived clinical deterioration | 32.1 |
| Do not feel confident to provide long-term care of GT postplacement | 29.5 |
- GT, gastrostomy tube; NGT, nasogastric tube.
- a (responses were “check all that apply”; thus, percentages are >100%).
In free-text responses, additional barriers listed included the child's size, medical complexity/instability, malnutrition, anatomic variation (such as scoliosis and large abdominal defects such as gastroschisis or omphalocele), lack of intra-abdominal space because of the presence of a ventriculoperitoneal shunt, previous surgical procedures, scarring, and radiation. Additionally, specific conditions included peritoneal dialysis, neutropenia and infection risk, complex cardiac or gastrointestinal conditions (such as inflammatory bowel disease), feeding intolerance due to gastroparesis requiring postpyloric feeding, autism spectrum disorder, and terminal conditions.
Table 3 also lists the perceived parent/caregiver barriers to GT placement as reported by the clinicians, notably the perceived permanence of a GT, fear of a negative impact of a GT on oral feeding, and fear of the surgery or its complications. Free-text comments included the belief that the presence of a GT preclude oral feeding and the inadequate communication by physicians/health professionals to the child and family regarding the purpose of the GT placement.
NGTs in the Home
To gather more information about the NGT-to-GT transition over time, questions about use of NGTs in the home were included in the survey. Most of the survey respondents (90%) report the use of NGTs for enteral access at home, with the indications for using that feeding device at home listed in Table 4. Seventy-six percent of respondents indicated that parents were taught how to place the NGTs at home. 32% of respondents indicated that parents were being taught the use of pH paper to verify NGT tip location. 28% of respondents indicated that parents are provided with pH paper for home use. However 12% of respondents indicated that parents were not provided with pH paper to perform this task at home. There was great variability in the application of pH paper for NGT verification, with most checking prior to every feeding (see Table 4). Follow-up for NGT feeding support was offered in a wide variety of outpatient settings, including by a dietitian alone (see Table 4). When asked whether their institution or practice setting use nasal bridles to secure the NGT, the majority said that they are not used in their care setting. Those respondents utilizing nasal bridles indicated that the devices were most often placed by nurses.
| Indications for using an NGT at home | Percent of responses (%) |
|---|---|
| Short-term enteral support is needed | 92.5 |
| Long-term EN is required because of self-limiting illness (ie, upcoming surgery, etc) | 50.3 |
| Child has life-limiting condition and GT is too burdensome | 45.3 |
| Child will have surgery in next 6 months and will be able to eat after that | 42.1 |
| To decrease inpatient length of stay | 40.9 |
| Other | 7.6 |
| Not applicable or unknown | 1.3 |
| If checking pH, when are parents doing this? | |
| When a new tube is placed | 40.5 |
| Before every feeding | 36.9 |
| When the tube appears to have moved | 16.7 |
| Once daily | 5.9 |
| If home-NG feeding is offered in your setting, where is the follow-up for NGT and nutrition care? | |
| General GI clinic | 33.5 |
| Specialty feeding/EN clinic/outpatient nutrition support team | 33.5 |
| Pediatrician's office | 16.5 |
| General pediatrician and GI or specialty clinic (depends) | 5.7 |
| Dietitian only | 3.2 |
| Other | 7.6 |
- EN, enteral nutrition; GI, gastroenterology; GT, gastrostomy tube; NG, nasogastric; NGT, NG tube.
- a Responses were “check all that apply”; thus, percentages are >100%.
Discussion
The survey results illustrate the wide variation of practice in management of EN among pediatric clinicians in the US and Canada. For example, despite the common usage of NGTs, clinicians responding to the survey described different approaches to NGT changes, transition from NGT to GT, barriers to change, and teaching and support offered at home. Although there are organized efforts to improve the safety of NGT usage by enhancing verification of NGT location, most notably by the ASPEN New Opportunities for Verification of Enteral-Tube Location (NOVEL) Project, hospital and community practices do not consistently support the standard of care put forward by ASPEN to use pH as the first-line method for NGT location verification, thus moving away from radiographic confirmation to verify tube placement.5 Follow-up practices also varied considerably, making education, consistency of safe practices, and information-sharing regarding enteral access a significant challenge for nutrition support teams.
Survey respondents repeatedly discussed NGT for “short-term” nutrition support and viewed the duration of nutrition support as the primary driver of the transition to GT placement. However, the survey did not provide clarity about the definition of “short-term.” Instead, a wide range of responses to define “short-term” from 6 weeks to 12 months was presented. However, in practice, results of the survey indicated that 3 months of NGT use was more typical prior to considering GT placement by just under a third of respondents. The literature is similarly vague about the duration of NGT use. Rosen and colleagues noted in a study of 87 children recieving home enteral support via NGT that children discontinued NGT EN after 4.8 months on average.6 In their population, they noted that by the time of follow-up after discharge from the hospital with their NGT (around 6–12 weeks), roughly 50% were receiving full oral feeds, only 9% were still receiving NGT feedings, and only 10% had a GT placed. This demonstrates that although the majority of children are able to shift back to oral feeds, there is a group of children who may require more prolonged nutrition support, perhaps by GT. Another study describing patients with feeding tubes showed a median duration of NGT use at 7.8 months.7 In this study, they noted that NGT use was associated with food refusal/poor oral intake when maintained for >3 months. It was unclear as to what the driver was for this trend of prolonged NGT, though a possible reason was the lack of clear-cut guidelines on the decision-making process with regards to shifting to GT feeding. Unfortunately, this prolongation was noted to bring about undesirable outcomes, specifically oral feeding refusal and suboptimal growth.7
The ASPEN guidelines for the use of parenteral and enteral nutrition in adults and children state that a GT should be considered for infants who will be unable to feed orally for 2–3 months.8 Clinical situations that warrant this consideration include neurological problems or the presence of malformations in the gastrointestinal tract, making oral feeding difficult and risky. The European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines for EN has a recommendation specifying the length of use of NGT based on the type of tube used and the complications that are encountered with its use.9 The ESPGHAN guidelines also recommended replacement of polyvinyl chloride NGTs every 3–5 days, whereas fine-bore tubes made of silicone or polyurethane can be used for up to 8 weeks. These guidelines did not indicate a specific time frame for the shift from NGT to GT but vaguely recommended that long-term EN should be provided using a GT.
Survey respondents provided useful insight into the many additional factors that contribute to the decision to consider GT feeding. It is notable that respondents to the survey indicated that the decision is usually taken on a case-by-case basis, with considerations of the patient's age, prognosis of oral feeding, progress of oral feeding, and clinician willingness. This leads us to examine institutional and clinician barriers side by side with child, parent, and family factors. When put into perspective, this paradigm encompassing a host of factors echoes what the literature endorses as the necessary elements for adequate decision support that families need to decide if GT placement is appropriate for their child. At the heart of it, decision-making in EN is complex, as has been shown in previous studies from families with children with neurologic disabilities. When families are faced with the decision, they are pushed to balance the benefits and costs.10-12
Institutional Factors and Clinician Barriers
Conflict among clinicians regarding the indications for GT placement and strong institutional or specialty preferences for prolonged NG feeding emerged as significant barriers to GT placement. Added to this, the major institutional barriers for GT placement cited by survey participants centered around access to the procedural service and the perception that GT placement in children was elective and, therefore, not prioritized. Not only does this result in prolonged wait times and further extension of NGT use after parents and clinicians have come to the decision but delays can create further dissension among nutrition support specialists and primary care teams. If clarity about indications for and prioritization of GT placement cannot be presented to family members, decisional uncertainty becomes even stronger. The health system, primary care team, and individual clinicians need to strive for a unified front on the indications, the complications, and the advantages and disadvantages of GT feeding to parents. Nutrition support clinicians have a central role in information-sharing between teams, within teams, and at institutional levels to achieve this clarity. The development and adoption of site-specific practice recommendations can be helpful to prevent tentative steps that can muddle clinical decision-making for professionals and families alike. Differing opinions within the primary care team should be discussed in care conferences so that management is seamless, safe, and effective and that a unified approach can be presented to parents to aid them in their own decisional uncertainty regarding GT placement.
It cannot be overemphasized that nutrition support clinicians and teams must strive to provide good education and aftercare once a GT is placed. In this survey, follow-up care after GT placement was highly variable from institution to institution, and at the same time, lack of effective aftercare was cited as a barrier to GT placement. Developing clear guidelines for follow-up of children requiring home EN support is critical and would be helpful in the early stages of decision-making, while reducing future decisional conflicts for families.
Child Factors
Often the child's fragile health or the co-occurring conditions influenced the timing and ease of decision-making for GT placement. Survey respondents reported that the majority of children being considered for GT placement were medically complex. The children's medical conditions caused their health professional teams to wrestle with the decision about GT placement related to the risks of placement, including anesthesia and postoperative complications. The literature shows that there should be careful consideration of medical conditions that make GT placement a major surgical undertaking. In certain populations though, early placement of GT may not be associated with a high rate of complications.13, 14 Children undergoing peritoneal dialysis were noted to have similar incidence rates for bacterial peritonitis before and after GT placement, along with the known benefit of early initiation of EN.15 Similarly, in children with cholestasis, GT placement should be considered a valuable alternative to NGT as the procedure is observed to be well tolerated with only minor wound infections seen as a complication.16 Early placement of a GT is appropriate in certain clinical conditions that can predispose to chronic feeding difficulty. Infants with Pierre Robin Sequence having significant oropharyngeal abnormalities with feeding difficulties and respiratory issues can benefit from early placement of a GT. Complications in these infants are mostly minor, and the procedure is considered safe.17 Children with cystic fibrosis, whose favorable outcomes are closely tied to maintenance of adequate body mass index (BMI) who receive GT feeds are more likely to achieve a BMI greater than or equal to the 50th percentile than those who do not.18 Early placement of GT in children with severe developmental disability provides benefits such as improved growth (if placed prior to 18 months of age) and overall status.19 Knowing the risks and benefits associated with GT placement affords nutrition support teams with an opportunity to share knowledge with primary care teams and families to assist in decision-making for children with medical complexity.
Parent and Family Factors
Parents face considerable uncertainty when it comes to deciding about GT placement in their children. More than 50% of survey participants listed the following as significant parental barriers for GT placement: parental worry about the permanence of the tube, the potential for stalling of oral intake if a GT was placed, the lack of indications for the tube, and fear of the surgically placed tube. Some of these barriers need to be validated or dispelled before moving forward with the decision to place a GT. The sharing of appropriate information, engaging the family, and building a partnership with them are all important steps for nutrition support teams to take in addressing barriers before moving forward with the decision of GT placement.20
Although parents were reported to worry that oral feeding therapy would stall after GT placement, Ricciuto and colleagues noted quite the opposite: that oral feeding refusal has been shown to be increased by prolonged NGT feeding.7 This makes physiologic sense, knowing that the physical placement of the feeding tube is painful and so could lead to oropharyngeal sensitivity.21 Lively and colleagues further suggested that tube-feeding weaning was impacted not by oral motor ability or other mealtime behaviors but instead by other factors, such as the type of tube used for nutrition support, the length of time receiving tube feeding prior to weaning, and the child's medical complexity.22
Parents must be provided with all the information they require to make a decision about GT placement, as misinformation about continued oral feeding, duration of tube feeding, or potential complications can result in considerable indecision for parents.23 Other authors have commented not only on the importance of open, frank information-sharing with parents about the goals of the GT, its complications, and risks and benefits but also on the importance of recognizing parental values associated with feeding and the sense of loss of an important human experience24 and failure that parents perceive when GT feeding is broached.20
Not only are parents concerned about the loss of feeding in the face of making a decision about GT placement, but they are also concerned about significant gastrointestinal symptoms that are perceived to be uncomfortable and disconcerting: gagging and retching, vomiting, nausea, and loss of appetite.25 Previous experiences of the family also need to be reviewed. Recounting frequent episodes of NGT dislodgement and assessment of poor quality of life for them and their child related to this along with oral feeding refusal and poor weight gain may lead caregivers to readily consider GT placement.7, 12 This brings to light the concept that EN affects the whole family, going beyond nutrition issues.
Mahant et al offer further insights into the presentation of information for GT placements that may help nutrition support professionals in assisting parents in the decisional uncertainty surrounding GT placement.10 It is of utmost importance that teams provide the right information to families at the right time, acknowledge the parental fear, incorporate the family values to enrich the conversation, and ensure that the family and health providers have confidence in the resulting decision. Time frame alone cannot determine the transition from NGT to GT. The complex interplay of child, parent, and family factors along with the medical system in which clinicians operate has great relevance in the process of deciding to move from “short-term” to more permanent enteral access.26 The model of shared decision-making can be adopted by nutrition support teams, similar to what was discussed by Brotherton and Abbot.12 The following themes identified from experiences of families with children with neurologic impairment can also be utilized to steer conversations between families and health professionals: physical status and quality of life of the child, parental stress, the parent-child relationship, logistical considerations for the family, emotional well-being of the family, interactions with the medical system, and socialization with the outside world.11 This will allow health clinicians and families to take the time to fully understand previous and current experiences of feeding as well as promote and encourage a conversation on perceptions of food and feeding. The interaction will allow families to realize the impact that GT placement can have on their values of feeding their child. These discussions can take an iterative course, so patience and consistency are key. An approach in finalizing the recommendation of GT placement can be arrived upon with all concerns addressed and validated. Support should then be provided up to the point that the GT has been placed, feeding tolerance is observed, and care is transferred to a knowledgeable professional for follow-up.
Limitations
Limitations to this study include the low response rate, as a generally acceptable external electronic survey response rate ranges from 10% to 20%.27 Although this new survey instrument had informal content validation, it has not been formally validated. The survey was timed at 15 minutes, which may have been considered too long to participate by some potential respondents. The survey was sent to nutrition support and Ped GI specialists, not general pediatric clinicians, and thus may not be indicative of overall practice. Future research is needed to explore the themes found in this study and may be applied to more specific pediatric populations.
Conclusions
This survey highlights the wide variation in pediatric EN device practices among clinicians in the US and Canada. A proposed standardized approach as developed using the findings of this survey and illustrated in a decision-making algorithm (Figure 1) takes into consideration the parent's perspective, the child's clinical setting, co-occurring conditions, and the available community resources. Ultimately, it is the parent's decision whether to transition from NGT to GT placement; however, the approach taken by clinicians is critical in that process. Shared decision-making by providing accurate, consistent, early information and supporting parental choice provides the safest practice with the best outcomes for children.
Statement of Authorship
R. A. Abdelhadi, G. Rempel, W. Sevilla, J. M. Turner, and P. Guenter contributed to conception/design of the research; R. A. Abdelhadi, G. Rempel, W. Sevilla, J. M. Turner, J. Quet, A. Nelson, K. Rahe, and R. Wilhelm contributed to acquisition, analysis, or interpretation of the data; R. A. Abdelhadi, G. Rempel, W. Sevilla, and J. M. Turner drafted the manuscript; R. A. Abdelhadi, G. Rempel, W. Sevilla, J. M. Turner, and J. Quet critically revised the manuscript; and all authors agree to be fully accountable for ensuring the integrity and accuracy of the work.
