Percutaneous endoscopic gastrostomy (PEG) was introduced 25 years ago (1), and is now widely used for enteral feeding in patients unable to feed satisfactorily orally. Reports of complications have been numerous (2–7), and there are concerns about gastroesophageal reflux (GER) developing or worsening after PEG insertion (3,5,8–11). In contrast to the well-documented somatic improvements after gastrostomy, few studies have focused on how PEG influences the general well-being of the child and its parents (9,12–14).
The aim of the present study is to evaluate perioperative findings and long-term follow-up results of PEG treatment in children. We describe indications and complications related to the procedure along with effects of PEG on feeding, vomiting/retching, and parents reported fulfillment of expectations regarding PEG. Predictors for tube removal and complications after removal were also assessed.
PATIENTS AND METHODS
PEG was inserted in 125 children in January 1994 to December 2002. Three patients had PEG and Nissen fundoplication performed concomitantly during this period and were not included in the series. One additional patient was excluded because of insufficient data (Fig. 1). Thus, 121 children were retrospectively reviewed, 59 boys and 62 girls. Median age at PEG insertion was 2.4 years (range, 4 months–13.2 years).
All patients had a preoperative upper gastrointestinal barium study performed to assess the anatomy of the stomach. Preoperative pH monitoring was done in some of the patients presenting GER symptoms (vomiting/retching). The reflux index was defined as the percentage of the total time pH is less than 4 during a standard 24-hour pH monitoring, and a reflux index less than 4 was considered normal.
The PEG was inserted under general anaesthesia using the pull-through technique as described by Gauderer et al (1). Prophylactic antibiotics were administered intravenously just before the procedure. A second-look gastroscopy was performed after the PEG had been inserted to confirm adequate positioning. The PEG tube was usually removed after 3 to 4 months and replaced by a balloon gastrostomy or a button. Before 1998, the internal bumper was not removed endoscopically, and the tube was cut at skin level. After several complications, with the bumper dislocating into the esophagus, routines were changed in 1998, and the internal bumper was removed endoscopically.
Preoperative data were registered retrospectively from medical records and included patient morbidity, indications for PEG, preoperative use of nasogastric tube, frequency of vomiting/retching (3-point scale: daily, frequent or never) and feeding habits (4-point scale: all in tube, most in tube, mostly orally or all orally). “Most in gastrostomy tube” and “mostly orally” was defined as more than 50% of total intake of liquids and solid food. Results of preoperative investigations and postoperative complications during hospital stay were also recorded. For children discharged to other hospitals after PEG placement, a case summary from the hospital stay was retrieved to assess complications after discharge from our department.
For follow-up studies, parents/caregivers were contacted by phone and a semistructured interview was conducted by a single interviewer. Parents/caregivers were asked to respond to questions concerning present vomiting/retching frequency and feeding habits using the same scoring format as with preoperative data. The interview also included questions on problems with the stoma, main indication for PEG, whether this problem decreased after PEG, fulfillment of preoperative expectations (3-point scale: fulfilled, partially fulfilled or not fulfilled) and if they would have chosen insertion of a PEG again. In addition, parents/caregivers were encouraged to assess if the PEG had influenced the child's overall situation (3-point scale: situation better, unchanged or worse). Additional comments from parents/caregivers were also noted.
Participation in the follow-up interview was voluntary, and the study was approved by the Norwegian Regional Ethics Committee (Health Region South).
Data were analysed using descriptive statistics; frequencies and percentages; and median and total range. The Mann-Whitney U test was used for analysing age difference between children with the gastrostomy tube in place and those with tube permanently removed. The Mann-Whitney U test was also used for analysing age, time from PEG insertion to permanent removal of tube and number of stoma-related complications between those with problems after removal of the gastrostomy and those without such problems. The McNemar test was applied for testing influence of PEG on changes in vomiting/retching and feeding habits. Analysis has been performed by SPSS software (SPSS 12.0.1 for Windows; SPSS, Inc, Chicago, IL). A value of P = 0.05 was considered statistically significant.
Patient Characteristics and Perioperative Results
The children suffered from a variety of diseases of which neurological impairment was the most common (Table 1). Ninety-nine (82%) of 121 children were partially or fully fed through a nasogastric tube at the time of PEG insertion.
There was no 30-day mortality. Early (<30 days postoperatively) complications were seen in 15 (12%) of 121 children and included stoma-related infection (n = 10), pneumonia (n = 2) and tube dislodgement (n = 3). The infections were all successfully treated with either local or systemic antibiotics. In all cases of tube dislodgment, the gastrostomy tube could be replaced without surgery 7, 8 and 9 days after PEG insertion.
Twenty-nine (24%) of 121 children died at a median of 15 months (range, 1.5 months–8 years) after PEG, and follow-up details for these children are not included. No deaths were related to the gastrostomy (Table 1). Of the remaining 92 children, we were able to get in contact with 85 families, and all agreed to participate in the follow-up study. Median follow-up time was 5.6 years (range, 1–10 years).
Stoma-related complications were common and occurred in 62 (73%) of 85 children (Table 2). In 1 patient, the gastrostomy tube dislodged to the colon 4 months after insertion, and the child suddenly suffered from severe diarrhoea. The PEG was removed, and a Stamm gastrostomy performed. In 3 of 58 patients in whom the internal bumper was not endoscopically removed, the device went up into the esophagus. One of these children developed a tracheoesophageal fistula, and a thoracotomy was performed to close the fistula. The other dislodged internal bumpers were successfully removed endoscopically.
Before the PEG was inserted, 93 (77%) of 121 patients had daily or frequent (more than once/wk) vomiting or retching, indicative of GER. Other symptoms of GER, such as aspiration, regurgitation and behaviour of pain were not possible to retrieve retrospectively. A 24-hour pH monitoring was performed in 42 (45%) of these children, and 22 (52%) had a reflux index greater than 4. Since PEG insertion, 11 (13%) of 85 children had later undergone antireflux surgery. Four of them had a reflux index greater than 4, 1 had no pathological reflux and the remaining 6 had no pH monitoring done before gastrostomy placement. Excluding children operated with antireflux surgery, problems with vomiting/retching reduced in 45 (61%) of 74 after PEG insertion (P < 0.001). There was no difference between those who had a pathological pH index before PEG and those who had a normal pH monitoring regarding change in frequency of vomiting/retching (data not shown).
Degree of oral intake improved for 36 (42%) of 85 children, remained the same for 20 (24%) of 85 and worsened for 29 (34%) of 85. Changes in degree of oral intake were not statistically significant (P = 0.06).
Only 21 (25%) of 85 children had the gastrostomy permanently removed. This occurred at a median of 3 years (range, 7 months–7.3 years) after insertion. The children who had the gastrostomy tube removed were younger at PEG insertion (median, 1.5 years) than those with tube still in place (median, 2.8 years) (P = 0.03). Delayed closure of the gastrocutaneous fistula (>1 month) after gastrostomy removal occurred in 10 (48%) of 21 children. Three of them needed surgical closure. The gastrostomy tubes in these patients were removed 15, 24 and 87 months after PEG placement. In total, time until gastrostomy tube removal was 36 months (range, 15–87 months) for those 10 who experienced delayed closure and 32 months (range, 7–84 months) for children with spontaneous closure of the fistula. This difference was not statistically significant (P = 0.62). There were no significant differences between these 2 groups concerning age at PEG insertion, diagnosis or stoma-related complications (data not shown).
At follow-up, most of the parents/caregivers were satisfied with the gastrostomy and reported that the PEG had improved the child's overall situation (Table 3).
At long-time follow-up, an overwhelming proportion of parents/caregivers were very satisfied with the gastrostomy and the way it had influenced theirs and their child's general situation. These results correspond to those of a previous study where caregivers of 30 children reported reduced family and child distress during feeding 3 to 9 months after PEG insertion (9). Similarly, problems with handling a nasogastric tube for long periods have been published (13), and caregivers reported reduced concerns about their child's nutritional status 6 months after insertion of a gastrostomy (12). Children themselves have also reported better health after PEG placement (15).
Almost three quarters of our patients had one or more problems with the gastrostomy tube or the skin around the gastrostomy. These results are consistent with those of other studies recording complications after interviewing parents (4,5). When complications are reported after review of medical records, complication rates seem lower (16,17). Although the number of complications is high, most were minor and easily treated. Furthermore, most of the problems occurred during the first 2 years (data not shown). This suggests that parents should be informed that minor problems are common after PEG insertion, but that they are usually easily treated.
Whether insertion of a gastrostomy worsens, improves or leaves GER unchanged, is a continuous debate (3,5,8–11,18–20). We can make no conclusion on how PEG influences GER in this retrospective follow-up study. To assess this topic, a preintervention/postintervention study is mandatory. However, parents/caregivers did report a significant reduction in vomiting/retching episodes after PEG, and only 4% of the children had more problems with vomiting after PEG insertion. We would argue that not all children presenting with vomiting/retching need a fundoplication concomitantly with the PEG. Fundoplication is a major procedure in comparison with PEG. If the child continues to have GER symptoms after the PEG is established, fundoplication can easily be done later. Jejunostomies or gastrojejunostomies are other alternatives for children with GER symptoms and feeding problems. However, a high rate of complications with these feeding tubes is usually reported (21–25).
The mortality rate in this patient population was high, as 29 (24%) children were dead at follow-up. This most likely reflects that many children needing PEG have serious underlying diseases with reduced lifetime expectancies. Similar observations have been made previously (9,16).
We did not confirm the results from other studies showing that the time between insertion and removal of the gastrostomy is predictive for a persistent gastrocutaneous fistula (26–29). Although our number of patients is smaller than in some of these studies, we would argue that even though the gastrostomy has been in place for a long time, spontaneous closure of the fistula may be expected.
Many children improved their oral intake after PEG, and 19 (22%) of 85 children were able to have the gastrostomy tube permanently removed because they could be adequately fed orally. Reasons for improved oral intake after establishment of a gastrostomy are suggested to be improvement in the child's medical situation, the removal of a nasogastric tube that positively influences oral stimulation and reduces discomfort and less stress during the meals.
To conclude, we have found that PEG is a safe technique for establishing enteral feeding, even in very sick children. There is a low frequency of major complications. Major symptom relief can be achieved in nearly all patients, and parent satisfaction with PEG is very high.
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