Percutaneous endoscopic gastrostomy (PEG) feeding is a valuable option for patients with a functional gastrointestinal (GI) tract who require long-term nutritional support but have insufficient oral intake (Blumenstein et al, 2014). In addition, some patients may require jejunal tube feeding to provide postpyloric feeding, which can be achieved using a PEG tube with jejunal extension (PEG-J) (Fröhlich et al, 2010; Kwon et al, 2010).
Although commonly performed, PEG is a surgical procedure with high rates of complications up to 51.5% reported in paediatric populations (Khattak et al, 1998; El-Matary, 2008; Park et al, 2011; Hansen et al, 2017; Balogh et al, 2019). Minor complications include granuloma formation, wound infection, blocked tubes and dislodged tubes. Major complications include colonic fistula, necrotising fasciitis, bleeding, volvulus, tumour seeding and buried bumper syndrome (BBS) (El-Matary, 2008; Hucl and Spicak, 2016).
BBS is a serious complication of gastrostomy tubes where the bumper, the internal fixation device, migrates alongside the stoma tract to embed between the gastric mucosa and skin surface. The main cause is excessive compression of tissue between the external and internal fixation device of the gastrostomy tube and it can require surgery (Cyrany et al, 2016). A previous 10-year retrospective review of paediatric patients with gastrostomy tubes showed high incidence of BBS (5.4%) (Stewart et al, 2017). In the patients who developed BBS, approximately 80% did not have complete documentation of provision of tube care instructions (Pradhan et al, 2016). Educational information provided to patients should be included in clinical notes (Mathioudakis et al, 2016). This is especially important as education and good tube care may reduce the incidence of BBS and other complications (Hucl and Spicak, 2016).
Nurse-led services have been shown to be successful across a variety of specialties in achieving high levels of patient satisfaction, improving patient access to care and improving patient outcomes (Al-Mallah et al, 2016; Pindard et al, 2016; Randall et al, 2017; Chan et al, 2018). Given the success of nurse-led services, the authors' service introduced a gastrostomy nurse specialist to address the high rates of BBS and incomplete documentation highlighted in the previous review, improve the gastrostomy service and provide education to improve gastrostomy care. The gastrostomy nurse specialist was involved in a variety of services including teaching and training nurses and parents/carers, running an independent gastrostomy care clinic, follow up, troubleshooting, liaising with outreach home enteral nutrition teams, documentation, competency assessment and tube change.
This report presents a 2-year prospective review of gastrostomy feeding in a nurse-led service at a tertiary paediatric hospital to determine its impact on gastrostomy complications, follow-up and patient and caregiver experience and explore recommendations to improve the service in the future.
Methods
The nurse specialist maintained a database of all the PEGs and primary PEG-Js inserted in paediatric patients (<18 years of age) between 4 January 2015 and 17 August 2015. All procedures were performed by either a paediatric gastroenterologist or paediatric surgeon.
Data were prospectively collected at 1 year and 2 years following PEG/PEG-J insertion. Data on demographic details, comorbidities, complications, satisfaction with care received (10-point Likert scale; 0=not at all satisfied, 10=completely satisfied), documentation, follow-up and future recommendations were obtained by reviewing electronic patient records and conducting a telephone survey of parents/carers at 1 year and 2 years following gastrostomy insertion. Parents/carers of all patients were contacted. If the parent/carer did not respond to the first telephone call, they were contacted again. Two attempts were made to contact parents/carers of patients at both time points before they were deemed a non-responder and excluded from this review. All parents/carers were asked the same questions in the telephone survey (Box 1). Any patients who had died during the 2-year period were also excluded from this review.
Box 1.Telephone survey questions
Can you confirm what type of feeding tube was inserted?
Year 1
|
Year 2
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Only paediatric patients who had a PEG/PEG-J inserted during the time period and those who responded at both time points were included in this review. In order to avoid bias, the data were collected by persons independent of the surgical team. Trust approval was obtained for this study. Continuous data was expressed as the mean ± SD and categorical data as the actual count with percentages unless stated otherwise. Statistical analysis was performed using two-tailed Fisher's exact test (P<0.05 was considered to be significant).
Results
A total of 62 children had a PEG (53/62) or primary PEG-J (9/62) inserted between 4 January 2015 and 17 August 2015. From this population, 32/53 (60%) patients with a PEG and 6/9 (67%) patients with a PEG-J responded at both 1 year and 2 years after the procedure and were thus included in this review. During the 2-year period, 1 patient with a PEG and 1 patient with a PEG-J died and therefore were excluded from this review. A further 20 patients with a PEG and 2 patients with a PEG-J were non-responders and therefore excluded from this review.
Mean age of patients with a PEG at time of PEG insertion was 3 years and 5 months (8 months to 14 years and 5 months). Mean age of patients with a PEG-J at time of insertion was 7 years and 8 months (3 years and 4 months to 16 years and 6 months). Comorbidities were present in all patients. Table 1 shows the distribution of comorbidities in both groups.
Table 1. Demographics
| Parameters | Number, N (%) |
|---|---|
| Mean age (range) (years and months) | |
| Percutaneous endoscopic gastrostomy (PEG) | 3 years and 5 months (8 months – 14 years 5 months) |
| Percutaneous endoscopic gastrostomy with jejunal extension (PEG-J) | 7 years and 8 months (3 years and 4 months – 16 years and 6 months) |
| Responders | 38 |
| PEG | 32/38 (84%) |
| PEG-J | 6/38 (16%) |
| Comorbidities | |
| Neurodevelopmental | 28/38 |
| Cardiorespiratory | 13/38 |
| Metabolic | 5/38 |
| Genetic | 11/38 |
| 2 or more comorbidities | 33/38 |
| Complications (as reported by parents/carers) | 17/38 (45%) |
| PEG | 12/32 (38%) |
| Minor: | 12/32 (38%) |
| Leakage | 3/32 (9%) |
| Granulation | 4/32 (15%) |
| Poor wound healing | 1/32 (3%) |
| Infection | 7/32 (22%) |
| Major: | 0/32 |
| Buried bumper syndrome (BBS) | 0/32 |
| PEG-J | 5/6 (83%) |
| Minor: | 5/6 (83%) |
| Leakage | 3/6 (50%) |
| Granulation | 1/6 (17%) |
| Dislodgement | 1/6 (17%) |
| Blockage | 2/6 (33%) |
| Major: | 1/6 (17%) |
| BBS | 1/6 (17%) |
| Children with BBS | 1/38 (3%) |
| PEG | 0/32 |
| PEG-J | 1/6 (17%) |
A total of 12/32 (38%) patients with a PEG reported complications: leakage (3/32; 9%), granulation (4/32; 13%), poor wound healing (1/32; 3%), infection (7/32; 22%). Only one infection was confirmed by culture. In the group of patients with a PEG-J, 83% (5/6) reported complications following PEG-J insertion: leakage (3/6; 50%), granulation (1/6; 17%), dislodgement (1/6; 17%) and blockage (2/6; 33%).
The overall incidence of BBS in this review was 3% (1/38). There were no incidences of BBS at 2 years for patients with a PEG. One patient with a PEG-J developed BBS (1/6; 17%), which required surgical treatment.
Average parent/carer satisfaction with care received following introduction of the nurse-led service was 9.13 (± 1.83) and 9.44 (± 1.05) (on 10-point scale) for patients with a PEG at 1 year and 2 years, respectively. For patients with a PEG-J, the average satisfaction was 8.33 (± 2.34) and 8.50 (±3.21) at 1 year and 2 years, respectively.
There was 100% documentation of provision of tube care instructions in patient records. All patients were followed up and offered timely tube changes (at minimum of 6 months).
For future care, 47% (18/38) wanted more written information regarding gastrostomy care and 74% (28/38) wanted further information via text reminders.
Discussion
The incidence of complications in this study was 38% and 83% for patients with a PEG and patients with a PEG-J, respectively. This is consistent with previous studies (Godbole et al, 2002; El-Mataray, 2008; Park et al, 2011; Hansen et al, 2017; Balogh et al, 2019) suggesting that gastrostomy insertion is a procedure with high rates of innate complications that occur following tube insertion.
In this study, following introduction of the nurse specialist, the overall incidence of BBS was 3% (PEG: 0%; PEG-J 17%), which is lower than a previous study at the same service (overall incidence: 5%; PEG: 3%; PEG-J: 27%) (Stewart et al, 2017). However, statistical analysis using Fisher's exact test, where P<0.05 was considered to be significant, showed this was not statistically significant (overall incidence: P=0.7123; PEG: P=1; PEG-J: P=1). Nonetheless, these findings are consistent with previous studies showing that the incidence of BBS is higher in patients with a PEG-J compared with that for patients with a PEG (Goring et al, 2016; Stewart et al, 2017).
PEG feeding is a long-term feeding option with PEG tubes requiring specific daily care carried out by parents/carers (Heuschkel et al, 2015). Therefore, ensuring that good instructions and proper teaching of tube care has been provided is essential. This should be reflected in documentation as clinical records should include information provided to patients (General Medical Council, 2019). The previous review highlighted that there was poor documentation of tube care instructions in patients who developed BBS (Pradhan et al, 2016). Implementing a nurse-led service enabled the service to achieve complete documentation on tube care instructions. This can help to improve patient care and continuity of care (Mathioudakis et al, 2016).
Furthermore, having a nurse specialist enabled the service to achieve follow-up for all patients and provide telephone advice and review of tubes before tube change. This may also help to mitigate complications by allowing earlier recognition and troubleshooting of complications, increase the availability of outpatient appointments and highlight any potential issues for tube changes.
The nurse-led service was well received by parents/carers: over the 2-year period, there were consistently high levels of satisfaction of care with the service. This is similar to other studies exploring the impact of nurse-led services (Randall et al, 2017).
One key strength of this study is that it is a prospective study and data were collected over a short period of time, during which practice remained consistent. However, this study has a number of limitations: the sample size for patients with a PEG-J is small, and the cost-effectiveness of a nurse-led service, long-term outcomes and complications for the patients were not explored; therefore, the team were unable to determine the long-term impact of the nurse-led service. Future research should address these areas and explore the benefits of using written resources and technological platforms.
Conclusion
This study provides further evidence for the benefit of nurse-led services with the service in question achieving complete documentation, sustained high levels of parent/carer satisfaction and reducing the rates of serious complications (BBS). Nurse-led services may also help to mitigate complications and allow effective troubleshooting of problems. The rate of complications following PEG and PEG-J insertion is high, suggesting high rates of innate complications with gastrostomy tubes and warrants further education on need for good tube care and early recognition of complications. Future research should focus on this and providing resources for parents/carers, potentially through the use of technological platforms.
KEY POINTS
- This study provides further evidence for the benefit of nurse-led services in percutaneous endoscopic gastrostomy (PEG) tube feeding
- The nurse-led service achieved complete documentation, sustained high levels of parent/carer satisfaction and reduced rates of serious complications
- Nurse-led services may also help to mitigate complications and allow effective troubleshooting of problems
- Rate of complications following PEG/PEG-J insertion is high, which warrants further education on good tube care and early recognition of complications
- Future research should involve providing better education and resources, potentially through the use of technological platforms
CPD reflective questions
- Nurse-led services are widely used. Are there any other specialities/procedures where having a nurse-led service would be beneficial? In what way?
- How confident are you in your ability to provide information regarding good tube care? How could you improve your knowledge and skills?
- How can technological platforms be used to improve post-procedure care?