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Original Articles: Hepatology and Nutrition

Dramatic Changes in Home-based Enteral Nutrition Practices in Children During an 11-year Period

Daveluy, Walter*; Guimber, Dominique; Uhlen, Stéphanie; Lescut, Dominique; Michaud, Laurent; Turck, Dominique§; Gottrand, Frédéric

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Journal of Pediatric Gastroenterology and Nutrition: August 2006 - Volume 43 - Issue 2 - p 240-244
doi: 10.1097/01.mpg.0000228095.81831.79
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Abstract

INTRODUCTION

Most of the severe and chronic diseases of childhood can be accompanied by undernutrition, and when dietary measures are insufficient, enteral nutrition may be needed. This type of nutritional support is preferred to parenteral nutrition when the digestive tract is healthy. Enteral nutrition was first proposed in 1973 to feed newborn and premature infants (1). When nutritional support is required for months or even years, home-based enteral nutrition (HEN) is the best solution for children and their families. Interest in this type of nutritional support has expanded rapidly worldwide. It is a safe and efficient technique that is compatible with a good quality of life, provided the children and parents are adequately trained and attend follow-up treatment (2). Although few studies have been published, one showed that children are happier at home and more active than in hospital (3). During the last decade, pediatric gastroenterology and nutrition techniques have progressed. The aim of this study was to document the evolution of the indications and techniques of HEN practice for children attending Lille University Hospital between 1990 and 2000.

MATERIALS AND METHODS

We retrospectively analyzed the data from all patients aged 17 years or younger who entered the Lille University Hospital HEN program between January 1990 (beginning of program) and December 2000; 238 patients were boys and 178 girls. The inclusion criterion was that the patient required enteral nutrition at home, as referred by the tertiary reference center of the Nord-Pas de Calais region of France (4 million inhabitants and 1 million children). One hundred and thirteen children (27%) were younger than 1 year, and 312 (75%) were younger than 10 years. The detailed characteristics of the study population have been previously detailed (4). Data were obtained from the HEN computerized database and from dietetic and medical charts for all patients. The enteral feeding diets used during the study were categorized into 2 types: homemade and commercially manufactured. Homemade diets were based on standard infant formulas, substitute infant milk or hydrolyzed proteins that were concentrated or enriched. Commercially manufactured diets included polymeric and semielemental adult-type diets and polymeric pediatric formulas. Nutrients were delivered by a nasogastric tube or a feeding tube delivered through a gastrostomy or jejunostomy. Enteral feeding was administered using pumps or gravity. Pumps were either refrigerated (Alaska, Fresenius-Vial S.A., Brezins, France) or used without a cooling system, commonly termed flow regulators (Kangaroo 224 and 324, Sherwood Medical, St Louis, MO, or Mini 1000, Fresenius-Vial). Some flow regulators were portable in a rucksack (Kangaroo 2100, Sherwood Medical; or VM05, Fresenius-Vial). Data were analyzed using the Statistic Analysis System version 8.0 and are expressed as means and SDs. The changes in patient age over time were analyzed using linear regression. Poisson regression was used to analyze the number of patients and days of using HEN. The Cochran-Armitage test was used to determine the significance of any changes over time in the use of nutrients, indications, or diets. Differences were considered significant when P ≤ 0.05.

RESULTS

HEN Activity

The 416 patients receiving HEN ranged in age from newborn to 18 years and accounted for a total of 243,844 days of HEN. The results for the total cohort have been reported elsewhere (4). The number of children receiving HEN annually increased significantly from 16 patients in 1990 to 200 in 2000 (P < 0.0001, Fig. 1). This represented increases of 98% between 1992 and 1995 and 94% between 1996 and 2000. The number of new patients every year increased to more than 50 patients per year from 1998 (Fig. 1). The number of days of HEN per year increased 22 times, from 2288 days to 50,838 days, between 1990 and 2000 (P < 0.0001).

F1-18
FIG. 1:
Number of patients treated with HEN between 1990 and 2000.

Age

At the time of starting HEN, 113 children (27%) were younger than 1 year, and 312 (75%) were younger than 10 years. The mean age of patients commencing HEN was 5.4 ± 5.3 years (range, 0-17.9 years), and the median age was 3 years during the study period. The mean age of patients commencing HEN decreased progressively during the study from 6.2 ± 1.4 years in 1990 to 4.8 ± 5.6 years in 2000 (P = 0.006, Fig. 2).

F2-18
FIG. 2:
Age of patients commencing HEN between 1990 and 2000.

Indications for HEN

Indications for starting HEN were digestive disorders in 147 patients (35%), neurological and muscular disorders in 144 (35%), malignancy in 47 (11%), failure to thrive in 32 (8%) and miscellaneous causes such as cardiopulmonary and renal diseases in 37 (9%). Neuromuscular disorders and metabolic diseases were the most frequent indications for HEN, affecting 30% to 45% of all patients, and these factors remained stable during the study (Fig. 3). The ratio of other nondigestive diseases as indications for using HEN also remained stable. Malignancy affected 4% to 8% of all patients (7%-15% of the new patients each year). The ratio of other general diseases also remained stable at 6% to 9% (7%-16% of new patients). Failure to thrive represented less than 7% of the population before 1996 (none between 1992 and 1994) and concerned 8% to 9% of the patients afterward (7%-14% of new patients, not significant).

F3-18
FIG. 3:
Changes in the 2 main indications for HEN over time (neuromuscular and metabolic diseases vs digestive diseases).

Digestive disorders included gastroesophageal diseases in 42 patients (29% of digestive disorders); cystic fibrosis in 34 (23%); inflammatory bowel disease in 33 (22%); intestinal dysmotility in 14 (10%) involving peritonitis, necrotizing enterocolitis, laparoschisis and intestinal "pseudo-obstruction"; hepatic disease in 14 (10%) and bowel malabsorption in 10 (7%) involving celiac disease, severe diarrhea, milk allergy and short bowel syndrome. The role of digestive diseases decreased significantly during the decade, accounting for 39% to 50% of indications for HEN before 1996, and decreasing gradually to 35% in 1997 and 32% in 2000 (P = 0.0006, Fig. 3). A significant decrease in the ratio of new patients included every year in the HEN program for this indication occurred during the same period, from more than 40% of the patients before 1996 to 24% in the last year of the study (P = 0.009). The percentage of patients with inflammatory bowel disease, involving Crohn disease in all patients but one, decreased significantly between 1990 and 2000, from 10% to 20% before 1994 to less than 10% afterward (P = 0.0003). Similarly, the proportion of new patients included every year also decreased from 15% to 20% before 1994 to less than 11% afterward (P = 0.02). However, the absolute numbers of patients and new patients with digestive diseases did not change during the study period.

Mode of HEN Administration

More than 50% of the patients received enteral nutrition via a nasogastric tube before 1994, but the use of this feeding route decreased significantly during the study period, from 63% in 1990 to 35% in 1998 (P = 0.009). During the same time, the number of patients with a gastrostomy increased from 50% to 61%. The trend was similar in the new patients, albeit not significant, and the nasogastric tube remained the major route of nutrition except in 1997 (46%) and in 1998 (43%). The nasogastric tube remained the initial mode of enteral nutrition for 55% of the new patients who started HEN in 2000. The use of flow regulators increased significantly during the study, from 20% to 26% of patients before 1993 to 85% in 2000 (P < 0.0001). In contrast, refrigerated pumps, which were used with more than 50% of the new patients before 1996, accounted for only 1.5% of the pumps used in 2000 (P < 0.0001). The gravity type of enteral feeding first appeared in 1998 and was used by 3% of the patients in 2000 and by 8% of all new patients.

Nutrients

No semielemental commercially manufactured pediatric enteral feeding diet was available in France during the study period. The use of a pediatric diet increased during the 11 years, from 37% to 45% of patients before 1993 to 69% in 2000 (P < 0.0001). This increase was also observed for the new patients included in the HEN program, from 72% in 1996 to 85% in 2000 (P = 0.0006, Fig. 4). Polymer-based pediatric enteral diets were prescribed mainly for all patients with nondigestive indications or with esophageal-gastric disorders. Their use increased significantly during the study period, from 6% in 1990 to 43% to 49% from 1998 onward (P < 0.0001). The use of infant formulas from hydrolyzed proteins did not change during the study period. Polymeric infant formulas were used by 5% to 15% of all patients during the study period, but this proportion increased significantly for new patients from 7% to 29% (P = 0.02). The use of adult-type diets decreased from 55% to 63% before 1994 to 31% in 2000, especially with semielemental nutrients, whose use decreased from 20% to 32% before 1994 to 2% from 1999. The semielemental adult-type diets were not used with any new patients from 1997 onward. Commercial diets remained the most frequently used diet for new patients throughout the study period, accounting for 50% to 82% of all diets (Fig. 5). Forty-four percent of the commercially produced preparations were hypercaloric for both the adult and pediatric diets, and this proportion increased during the 10 years, from 13% of diets for new patients before 1993 to 30% to 36% until 1996 and 54% to 63% until 1999. Eleven percent of the commercially produced preparations were diets with supplemental fiber.

F4-18
FIG. 4:
Changes in the type of diet (adult vs pediatric) used with new patients.
F5-18
FIG. 5:
Changes in the source of diet (homemade vs commercial) used with new patients.

The patient outcomes, such as restoration of normal oral feeding, death or failure of HEN leading to parenteral nutrition, did not change significantly during the study period (data not shown).

DISCUSSION

Experience with pediatric HEN has been reported only rarely, and our study appears to be the largest series limited to children. We have published a report of our preliminary experience from 1990 to 1993, but this report included only 79 patients (5). Navarro et al. (6) published the first French series of 111 children. The most important series was the study by McCarey et al. (7), published in 1996, which included 156 children treated at the Royal Hospital of Glasgow. Other series are more limited(3,8,9) or include both children and adults (10,11). Our study is also the first to examine the evolution of HEN over time.

The main feature of our study was the dramatic increase in the annual number of patients treated with HEN in our center. This increase can be explained by 3 associated factors. First, the numbers of new patients increased dramatically each year, during which time the pediatric indications for enteral nutrition also increased along with the increasing recognition of the clinical efficacy of nutritional support to treat most severe and chronic diseases in childhood. Improved prognosis for most of these conditions has led to the emergence of a large group of surviving children presenting with chronic malnutrition. The second factor is the increase in the duration of HEN, which is explained by the increased life expectancy of children with chronic diseases requiring HEN (eg, cystic fibrosis(12) and neurological disabilities) and is partly related to improvements in nutritional status (13). After starting HEN, most children receive prolonged treatment during several years, leading to a cumulative increase in the number of children in the program. Finally, new modes of health care delivery have also favored the development of HEN in our hospital, such as reimbursement of expenses by health care services, shorter hospitalization, the development of child home care and the formation of our artificial nutrition unit.

The clinical indications for HEN vary widely over the time. Home-based enteral nutrition improves the nutritional status of children with a wide range of major disabilities. Multiple factors can cause nutritional damage, such as malignancy, obstruction of the upper gastrointestinal tract and metabolic disorders. In our study, the ratio of digestive problems as an indication for HEN decreased significantly, although their absolute number remained stable, in particular for inflammatory bowel diseases. However, the numbers of new patients presenting with these pathologies every year remained constant at 2 to 3 patients each year with inflammatory bowel disease, whereas the number of new patients with cystic fibrosis and esophageal-gastric disorders increased 3-fold during the study period. The increasing use of HEN was caused mainly by the increasing proportion of patients with nondigestive disorders. For some diseases, such as malignancy and renal and muscular diseases, recent progress in treatment has led to improvements in prognosis and life expectancy. This has been accompanied by increased recognition of the use of nutritional support for these pediatric diseases.

One of the most important results of our study is the young age of patients starting HEN. The mean age of our patients when they commenced HEN is lower than in other series (7,10), and it decreased during the course of our study. The changing incidence of pathologies during this period could not explain this completely, and it probably results from the earlier recognition of the need for nutritional support in several chronic diseases and from the development of gastrostomy for young children and infants.

The use of gastrostomy increased during the 11 years of the study, with the development of percutaneous endoscopic gastrostomy. Gastrostomy is the preferred method of enteral feeding when the nutritional support is needed for more than 2 or 3 months (14,15). Although a nasogastric tube can be placed easily by the family or the patient, its acceptability decreases with time. Percutaneous endoscopic gastrostomy was first introduced in 1980 (16), and its use in pediatric patients has rapidly increased (17,18,19). This has been the most frequently used technique in our center for many years. In our experience, percutaneous endoscopic gastrostomy does not cause gastroesophageal reflux nor does it exacerbate an existing gastroesophageal reflux (18,20), although late complications have been observed with increasing experience of the technique (21). Even in the most recent period, nasogastric tubes still represent 45% to 50% of all feeding routes in our HEN program. This is probably because many of our new patients need HEN for only a short time because of malignancies or inflammatory bowel diseases, in which a nasogastric tube is usually preferred to gastrostomy. Jejunostomy remains an exceptional alternative in our experience and is reserved for severe and persistent gastroesophageal reflux, as reported in other series (7,10).

Polymeric, semielemental or elemental diets should be administered according to the pathology that requires enteral nutrition. In theory, polymeric diets are reserved for patients with a normal bowel. Our study shows that the use of semielemental enteral preparations decreased over time, reflecting the low number of diseases requiring semielemental formulas (such as short bowel and malabsorption). Decreased use of adult enteral diets occurred mainly for semielemental diets.

We used commercially manufactured pediatric enteral feeding more frequently during the study period because of the recent development of pediatric-specific enteral diets in sterile packaging required for bacteriological security (22). This explains why flow regulators have also progressively replaced refrigerated pumps. The use of hypercaloric commercially manufactured diets increased dramatically during our study. In contrast, commercial diets with supplemental fiber were not used much, but such pediatric diets supplemented with mixed soluble and insoluble fiber appeared in France only during the late 1990s. Increased use of such products is expected, depending on their efficacy and tolerance, although this has not been studied yet.

Commercial enteral diets using standard infant formulas or hydrolyzed protein diets were frequently administered in our study. Several diseases or conditions, such as hepatic diseases and malabsorption, require the use of semielemental diets, but such pediatric products were not available in France before 2001.

CONCLUSIONS

Since first being used with children in 1990, HEN activity in our hospital increased rapidly during the following 11 years and was accompanied by a dramatic evolution of the practice. Our changing practices reflect the development of improved pumps, enteral diets and medical delivery techniques such as percutaneous endoscopic gastrostomy. Evaluation of the quality of life of children receiving HEN and of their parents should be assessed in future studies.

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Keywords:

Enteral nutrition; Gastrostomy; Child; Pediatric diets; Home-based

© 2006 Lippincott Williams & Wilkins, Inc.