Development Prevention and Treatment of Feeding Tube Dependency
INTRODUCTION
Tube dependency is defined as "the active refusal to eat or drink, lack of motivation or inability to learn, or showing no precursors of eating development and skills after long-term enteral feeding" (1 , 2). Tube dependency greatly impacts the quality of life of children and families and is a significant burden to the health care system (2). Economic challenges, increased burden of care, and psychosocial issues all reinforce the need for timely tube removal.
Home-based treatment of feeding tube dependency and feeding tube weaning were first established in Germany in 2005 (3). Other established feeding programs include the following: the Newborn Individualized Developmental Care & Assessment Program (NIDCAP) (4). The Sequential Oral sensory (SOS) Approach to Feeding (5), the Satter Eating Competence Model (6), and programs worldwide in places such as Austria (7), the United States (8), the Netherlands (9), and France (10). Many programs consist of intensive outpatient or even two to three weeklong inpatient stays. British Columbia (BC) Children's Hospital (11) and Montreal Children's Hospital (12) are the only two dedicated ambulatory clinics for feeding disorders currently in Canada; however, there are currently no studies published on the methods and effectiveness of pediatric feeding programs within Canada that support tube weaning.
The Canadian Pediatric Society (CPS) and American Academy of Pediatrics (AAP) have guidelines on the provision of enteral nutrition support, but there are none specifically for tube weaning (13 , 14). The CPS and AAP guidelines state that nasoenteral tube feeding is not appropriate for long-term home nutrition support and recommend gastrostomy tubes for nutrition support predicted to last 2–3 months or more. A 2010 survey of pediatric health care providers at our institution demonstrated that 73% of pediatric health care practitioners were unaware of these guidelines and 47% would consider a gastrostomy tube only after 3–6 months. At our center, the duration of both nasogastric and gastrostomy tubes feeding is prolonged for a significant number of children. The average duration before discontinuation or conversion to a G tube was 114 days (range 2–608 days) (Figure 1). These data were based on a clinical audit of consecutive patients referred to our Pediatric Home Nutrition and Support Program (PHNSP) for tube feeding from January 2014 to December 2015. While 69% of children with a nasal tube successfully wean off of tube support, 47% exceeded the CPS recommended duration of 3 months and 25% had the nasal tube for more than 6 months, before they either weaned or converted to a gastrostomy tube. This prolonged duration of tube feeding is both highly costly to our institution and a burden on the children and their families.
Duration of tube use among enterally fed pediatric patients (n = 237) at the Stollery Children's Hospital 2014–2015.
Our institution's current practice to address tube dependency is not formalized. The PHNSP at the Stollery Children's Hospital in Edmonton, Alberta, serves ambulatory patients located north of Red Deer, Alberta. Children are followed by phone, telehealth, and in-clinic visits. While all patients are seen regularly by a nurse, dietitian, and feeding therapist, the team guides tube weaning in conjunction with the family according to their clinical judgment and perceived psychosocial and nutritional readiness of the child and family. To address the need for a more structured approach, a child-centered program called "Mealtime Support" was initiated at the Stollery Children's Hospital. Utilizing a hunger-based approach similar to the Graz model (15), the eligibility criteria and approach in the outpatient setting was patterned after the tube weaning programs in Seattle and Vancouver. This 2-week intensive intervention was designed to encourage self-regulated oral intake and teach children that eating is a solution to hunger.
The primary aim of this study was to demonstrate the feasibility and effectiveness of Mealtime Support, including parent satisfaction and cost benefit. A secondary aim was to determine the number of pediatric hospital admissions and gastrostomy tube insertions from 2008 to 2019, per province, from the Canadian Institute for Health Information (CIHI). We hypothesized that there is a rising number of tube dependent children across Canadian provinces, which would justify support for weaning programs (like Mealtime Support) in our center and Canada wide.
METHODS
This pilot study was approved by the institutional review board at the University of Alberta (ethics number: PRO00106151). Signed informed parental consent was obtained for each participant.
Approximately, 20 children were submitted by their PHNSP team as eligible for this program and the first 6 consecutive children were enrolled in Mealtime Support from December 2016 to December 2017. Of the remaining 14 children, one child was ineligible for the program due to a medical comorbidity. The other 13 were all excellent candidates for the program and were waitlisted. Children were referred to the program by their PHNSP care team and screened for eligibility by the program physician (JT). Criteria for eligibility included: feeding tube dependency, with prior unsuccessful attempts to tube wean during the course of the standard care provided by the multidisciplinary teams. The patient had to be bolus fed, considered medically stable and safe for oral eating. Social stability was also required, meaning no major changes at home. All of our patients lived with both of their parents and did not have a new sibling born in the past year or being born in the coming year. Finally, the child had to be familiar with home mealtime routines and comfortable around food.
Children selected were seen in clinic by their pediatric gastroenterologist (JT), occupational therapist (AV), and registered dietitian (CP) 1 week before starting. At this time, a physical assessment, meal observation, and nutritional assessment were completed. There was an physical examination done by their medical provider (JT) who reviewed their medical history. No additional bloodwork was required. Their dietician (CP) also assessed their caloric needs and which percentage they were taking in orally and via G tube. Before starting, children had a medically approved rapid reduction in calories (–80%) and fluids (–20%) over 4 days to promote hunger and interest in eating. Families were given a printed reduction schedule, and ffood records were provided and recorded by the family starting from day 1 of calorie reduction. Feeding sessions were conducted by the occupational therapist and dietitian, 2–3×/day, 5 days per week. Sessions were individualized and modeled after the families usual meals. Behavioral interventions were used to help increase oral intake and reduce the fear of swallowing (16) through structured meals, social modeling, and positive reinforcement (17). Top-off tube feeds were given immediately upon completion of each meal/snack and were provided at the table. Children were weighed 3×/week. Oral intake was recorded daily and analyzed by the dietitian using Food Processor 11.0.3. Mealtime Support was discontinued if the child lost more than 10% of their weight in a week.
The child and at least one caregiver participated daily in the program for 2 weeks (Monday–Friday), 3×/day (breakfast/lunch/snack). Siblings and other family members were also encouraged to participate. Breakfast and lunch were more structured, while the focus of the afternoon session was on food play. Based on the child's interest, mealtime sessions took place in an outpatient ambulatory clinic setting but some sessions took place at other locations such as at home or daycare. The goal was to equip parents and caregivers with strategies that they could apply at home. After several sessions in the ambulatory clinic, the child had their remaining meals at home, and parents were responsible for providing the same mealtime routine and tracking their child's oral intake.
Nutritional outcomes and weight were evaluated over 9 months following completion of program a follow up assessment was made by the dietician
Caregiver Survey
Both caregivers for each family were asked to complete a 12-item survey around mealtime experiences pre- and postprogram completion (Table 3). The survey was developed based off of the psychometric properties of the Brief Autism Mealtime Behaviors Inventory (BAMBI) (18). Although BAMBI was developed for children with autism, many of the variables surrounding mealtime behaviors were easy to understand and analogous to our tube dependent population.
Micro-costing Analysis
A micro-cost analysis was performed by calculating basic resource utilization for ongoing tube feeding over a year, as compared to the defined costs of the Mealtime Support program over the 2 weeks. The costs of ongoing tube feeding in the program used 2017 fiscal year data (April 1–March 31). To calculate the total annual costing per patient, we looked at formula cost, supply costs, delivery cost, pump cost (total cost of pump divided by 5 years), 3 gastrostomy tubes per year, 2 clinic visits a year with 3 staff members.
CIHI Data
Data obtained from CIHI included the number of pediatric (<18 years old) hospital admissions and gastrostomy tube insertions in Canada, collected from Discharge Abstract Dataset metadata and National Ambulatory Care Reporting System between 2008 and 2019. The specific CIHI codes used for this data search included: the number of internal devices implanted in the stomach (1.NF.53) surgically and with interventional radiology but excluded gastrostomy tubes implanted endoscopically: per orifice approach (1.NF.53.CA-TS), using endoscopic per orifice approach (1.NF.53.BA-BC) and using endoscopic per orifice approach of barrier device (e.g., ValenTx implantable device) (1.NF.53.BA-ES). Among Canadian pediatric GI centers, as far as we are aware our site is the only one placing gastrostomy tubes endoscopically and so small subset of tubes placed endoscopically at our center were not included in the CIHI data set.
Statistics
Pilot data are shown descriptively per individual patient. Survey outcomes pre- and postprogram were evaluated using student t tests. Multivariate linear regression modeling examined the CIHI data for prediction of number of gastrostomy insertions per 100 000 pediatric population by province and time (year), corrected for the total pediatric population and number of admissions in each province per year. Analysis used SPSS and significance was set at P < 0.05.
RESULTS
Six children (3 girls–3 boys, aged 14 months–8 years) participated (Table 1). Before commencing the program, patients were taking 0–30% of their nutrition orally and on average had been tube fed for 57 months (range 18–95 months). Five patients completed the program; one patient had to discontinue due to excessive weight loss (Table 2). In the five children who completed the program, no weight loss was observed by 9-month follow-up (Table 2). The oral intake over time for all patients is shown in Figure 2. At 1 month after the program 4 patients took 100% of their nutrition orally, one patient was 100% orally fed by 5 months and the remaining one patient continued to be tube fed (Table 2).
TABLE 1. - Patient age, medical history and tube feeding history of Mealtime Support participants
| Patient | Age/gender | Medical history | Tube feeding duration |
|---|---|---|---|
| Patient 1 | 4 y old Male | GERD, oral aversions | NG tube: 4 mo G tube: 7 mo Total duration: 11 mo |
| Patient 2 | 4 y 5 mo Female | Ex-30-wk preterm, Trisomy 21, complex congenital heart disease | NG tube since birth G-tube at 21 mo Total duration: 53 mo |
| Patient 3 | 3 y 7 mo Female | Congenital diaphragmatic hernia, chronic lung disease, gastroesophageal reflux disease | NG tube since birth G-tube/fundoplication at 3 mo Total duration: 43 mo |
| Patient 4 | 18 mo Male | Ex-25-wk preterm, chronic lung disease, gastroesophageal reflux disease | NG tube since birth G-tube/fundoplication at 8 mo Total duration: 18 mo |
| Patient 5 | 8 y 2 mo Female | Failure to thrive, recurrent vomiting, congenital heart disease, nephrocalcinosis | NG tube at 3 mo G-tube at 7 mo Total duration: 95 mo |
| Patient 6 | 6 y 9 mo Male | Complex congenital heart disease | NG tube since birth G-tube at 9 mo Total duration: 81 mo |
TABLE 2. - Patient age, medical history and tube feeding history of Mealtime Support participants
| Patient | Weight before program start kg (z score) | Height before program start cm (z score) | Weight at 2 wk program end kg (z score) | Weight 9 mo postprogram kg (z score) | Height 9 mo postprogram cm (z score) | Comments on continuation of tube feeds |
|---|---|---|---|---|---|---|
| Patient 1 | 16 (–0.08) | 102.8 (0.14) | 15.3 (–0.55) | 18.4 (0.23) | 107.7 (0.08) | Discontinued all tube feeds × 18 mo postprogram |
| Patient 2* | 13.9 (–1.37) | 92 (–2.52) | 12.8 (–2.30) | 14.4 (–2.85) | 93.5 (–3.05) | Discontinued all tube feeding during program |
| Patient 3 | 11.8 (–1.45) | 92.5 (0.28) | 11.7 (–1.65) | 12.4 (–1.57) | 94.3 (–0.76) | Discontinued all tube feeding during program |
| Patient 4 | 9.9 (–0.69) | 78 (–1.15) | 10.1 (–0.60) | 10.8 (–1.44) | 85 (–1.46) | Discontinued all tube feeding during program |
| Patient 5 | 18.1 (–2.50) | 110.5 (–3.24) | 17.2 (–3.03)† | N/A† | N/A† | Still tube feeding 4 y postprogram |
| Patient 6 | 19.1 (–1.18) | 113.6 (–1.19) | 18.9 (–1.28) | 19.0 (–1.81) | 116.5 (–1.30) | Discontinued all tube feeding during program |
*Patient has trisomy 21 †Weight recorded at 1 week into program as discontinued program at that time; next available data at 17 mo after program completed: 21.3 kg (–2.24) with height 119 cm (–2.66).
Percentage of daily caloric requirements consumed daily during Mealtime Support Program.
Survey
Ten parents completed the survey at intake and program completion. There was a statistically significant improvement (P < 0.05) postintervention in 8 of 12 areas by both primary caregivers. Caregivers reported significant improvement in mealtime struggles (P = 0.005), reduction in worry about their child's eating (P = 0.004), and improvement in their child's appetite/variety of food eaten (P = 0.004) (Table 3).
TABLE 3. - Survey results pre- and postcompletion of meal time support program
| Answers represented by Likert of 1–5 (as indicated) | Mean score preintervention | Mean score postintervention | P |
|---|---|---|---|
| Mealtimes (easy to difficult) | 3.6 | 2.4 | 0.005 |
| Worried about child's eating (none to very) | 3.6 | 2.3 | 0.004 |
| Childs appetite (good to none) | 3.4 | 2.0 | 0.004 |
| Child gag, spits or vomits (never to most of the time) | 3.5 | 2.3 | 0.013 |
| Child holds food in mouth without swallowing (never to all the time) | 2.9 | 1.9 | 0.001 |
| Use of distractions for child to eat (never to most of the time) | 2.2 | 1.7 | 0.052 |
| Use of force or bribes for child to eat (never to most of the time) | 2.8 | 2.1 | 0.191 |
| Length of mealtimes (< 10 min to over 40 min) | 3.2 | 3.0 | 0.443 |
| Worried about child's weight (none to very) | 2.7 | 3.2 | 0.177 |
| Child variety of foods (good to very limited) | 3.5 | 1.5 | 0.002 |
| Influence of feeding on relationship with child (none to very negative) | 2.4 | 1.9 | 0.096 |
| Influence of feeding on other family relationships (none to very negative) | 2.6 | 2.0 | 0.051 |
Microcosting
The PHNSP provided supplies, formula, and clinical support to all patients within its catchment area. Costs for the supplies for tube feeding (excluding staffing or other health utilization costs related to tube feeding) was estimated at $36 766.12 for a year for all 6 patients, ($6127.69 per patient). If we subtract the cost of Mealtime Support ($19 840), the total cost savings for the year is $16 926 for the 6 patients. Savings would have been higher but 2 patients were on blended tube feeds and received no formula from the program. The cost for Mealtime Support sessions for the child that was discontinued was $1240. The cost of supplies/formula for the 5 patients that completed Mealtime Support is $34 281 and if the cost for meal time support is $18 600, then the total program savings is $15 681. Only one of the patients in this group was on blended tube feeds.
The second year of costing showed savings of $43 471, as we did not have to pay for formula and supplies for 4 patients and there was no cost for the Mealtime Support sessions. There was some formula and supply costs for 1 patient that did not come right away and for the patient who did not complete the program due to weight loss.
Trends in Pediatric Enteral Nutrition Support in Canada
The CIHI data showed a stable number of pediatric hospital admissions between 2008 and 2019 in Newfoundland (NL), Prince Edward Island (PEI), Nova Scotia (NS), New Brunswick (NB), Ontario (ON), Manitoba (MB), Saskatchewan (SK), British Columbia (BC), and the North West Territories (Terr) with the exception of Alberta (AB), for which pediatric hospital admissions increased from 9856 to 11 738 admissions in 2008 and 2018, respectively.
The number of gastrostomy tube insertions in the provinces over 2008–2019 is shown in the Supplemental Digital Content Figure 1, https://links.lww.com/PG9/A63, with apparent increases over time for SK, NS, and AB. PEI and NB were excluded due to low numbers. Using multivariate modeling, individual province (<0.001) and year (P = 0.018) independently predict the number of gastrostomy tubes per 100 000 children, explaining in total 36% of the variance for annual gastrostomy tube insertions.
DISCUSSION
Feeding tube dependency has a destructive impact on the quality of life of the children and their families. Tube dependency negatively impacts the parent-child feeding relationship and families often revert to extreme and intrusive measures to encourage their child to eat and drink orally, such as force feeding (19–23). Mealtime Support was effective in weaning 4/6 children off enteral nutrition support within only a month. Although a labor intensive program, there is a cost benefit that would be cumulative if the children continued to be tube fed over more than an additional year. Importantly, the parents perceived a significant benefit. Although, families were eager to participate in this initiative and encourage their children to eat orally, there was some anxiety related to the aggressive caloric reduction and their child's inability to understand hunger. All of the families had previously tried withholding tube feeds to promote hunger with no success, so there was some emotional distress and apprehension with the hunger based approach. With such a medically complex patient population, families frequently required reassurance and found it challenging to overlook the initial weight loss (24).
Based on the CIHI data, the number of gastrostomy tubes inserted per 100 000 children varied significantly between provinces across the country (Supplemental Digital Content Figure 1, https://links.lww.com/PG9/A63). NS, SK, and AB have the highest numbers of gastrostomy tubes inserted with 33, 22, and 22 insertions per 100,000 children in 2018, respectively. These provinces have also seen an increase in the number of tubes inserted over time. There is a growing number of tube dependent children in our own institution and at Mealtime Support grew to a waitlist of 12 children. However, despite these growing needs and Mealtime Support's effectiveness and benefit to families demonstrated in the pilot study, the program was not further funded due to a lack of prioritization.
This pilot study's main limitations include the small sample size, the potential for selection bias, and the lack of a control group. It is also difficult to ascertain in this particular cohort of children when they may have stopped tube feeding and therefore interpret the 2-year cost savings for certain. The CIHI data was also not mandated for all facilities for all years across the provinces included and given no individual patient identifiers, multiple tube placements per individual patient cannot be excluded.
CONCLUSIONS
The transition from tube feeding to oral feeding is difficult for children who are tube dependent and poses several economic and psychosocial challenges. Although the number of pediatric hospital admissions have remained stable per 100 000 children in most provinces, except Alberta, there appears to be a growing number of pediatric patients who require feeding tubes in several provinces. Much like successful outpatient hunger provocation programs in the United States (10), Austria (8), the Netherlands (25), and France (26). Mealtime Support is an effective and cost saving way to wean children off tube feeding. Families reported significant improvements in 8 of 12 mealtime behaviors and 4/6 children 100% orally fed immediately postprogram completion. A limited microcosting study demonstrates cost-savings over 2 years of approximately $43 500.00. This promising pilot data sets the stage for future larger scale studies of this type of ambulatory program for children with tube dependency. With a growing number of tubes inserted in children in Canada, there remains a need for multidisciplinary, child, and family-centered, hunger-based outpatient feeding programs to help families achieve safe and adequate oral nutrition and avoid the challenges of tube dependency.
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Keywords:
feeding program; tube feeding; tube dependency; tube weaning; clinical hunger provocation
Supplemental Digital Content
Source: https://journals.lww.com/jpgnr/Fulltext/2022/02000/Mealtime_Support__A_Pilot_Case_Series_study_of_an.23.aspx
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